Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Kk Greenie. The doctor gave me Proclorperazine. It didn't help me that much but meclizine did. We all have to find what works for us. Good luck and hang in there. Prayers & Blessings Jeanie 18's 🐠🐠 > On Jan 30, 2015, at 7:48 AM, Myvety2k via CMLHope > wrote: > > Jeanie, I take promethazine 25mg but I cut them in 1/4 because if I take the > hole pill in makes me sleepy. 1/2 works better but that puts me into low > gear. But it does take away the nausea. > > greenie > > In a message dated 1/30/2015 7:44:52 A.M. Eastern Standard Time, > cmlhope@googlegroups.com writes: > Hi Greenie > Sorry to hear you still have your nausea. > Have you tried Meclizine ? I find it works better than compozine. My > nausea is better since coming off hydrea. > I am on my 5th day of ponatinib.I had blood work done yesterday. > My WBC came down but the platelets keep going up. Still in the millions > (1529) The doctor is baffled but dropped my ponatinib to 2 (15 mg) tablets > daily. > My skin is drying out and headaches have returned. This reminds me of > Gleevec but it has many side effects. > Just have to deal with them as usual. > I hope everyone is good this morning. > > > Prayers & Blessings Jeanie 18's 🐠🐠 > >> On Jan 30, 2015, at 7:07 AM, Myvety2k via CMLHope >> wrote: >> >> I all the good news was short termed, I woke up yesterday and the nausea >> came back so I'm thinking I may have picked up some bug. Grace she's O.K. >> time will tell. So far this morning I feel find but will see our the rest of >> the day goes. >> >> greenie >> >> In a message dated 1/29/2015 9:51:44 P.M. Eastern Standard Time, >> cmlhope@googlegroups.com writes: >> YEAH FOR GOOD NEWS!!!! :) Beth >> >> >> -Original Message- >> From: Myvety2k via CMLHope >> To: cmlhope >> Sent: Tue, Jan 27, 2015 4:59 pm >> Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? >> >> Well, I have good news. We both woke up today, Grace was O. K. and later on >> into the day I'm feeling much better. Tomorrow well tell the truth. I'll >> let you all know and Thanks for thinking of us both. We all are one hell of >> a team, we should have our own Superbowl.. >> >> greenie >> >> In a message dated 1/27/2015 1:32:57 P.M. Eastern Standard Time, >> cmlhope@googlegroups.comwrites: >> maybe you both have a bit of a virus or bug? Hope that's all it is and you >> both will feel better soon. It does seem odd when all of a sudden after so >> many years you get a symptom like nausea. >> Be well...thinking of you and everyone else today... >> >> Beth >> >> -Original Message- >> From: Myvety2k via CMLHope >> To: cmlhope >> Sent: Mon, Jan 26, 2015 5:09 pm >> Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? >> >> Hi Beth, I'm starting to think it's not the Gleevec that's given me the >> nausea because my wife started to get the nausea also. Could be Florida >> weather, tree's, flowers, etc. >> >> greenie >> >> In a message dated 1/26/2015 6:05:17 P.M. Eastern Standard Time, >> cmlhope@googlegroups.com writes: >> Greenie, Remember, if you do need to swap a TKILots of good options with >> low doses because you have done so well for so long on Gleevec...you are a >> warrior. My blood counts are O.K...but I appreciate the anxiety of all this >> for all of us..it's one of the harder parts to manage well. Good luck to >> you! Beth >> >> >> -Original Message- >> From: Joan >> To: cmlhope >> Sent: Mon, Jan 26, 2015 5:01 pm >> Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? >> >> Greenie, >> I had to quit Gleevec because it was messing with my kidneys. Now I take >> Tasinga. >> Joan >> >>> On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: >>> Hi to my friends in our group, well I've been on Gleevec for 15 years and >>> 14 days all of a sudden for the last 4 days I'm having nausea problems. >>> I'm taking some promethazine that helps some what but it's not a fun thing. >>> I have no idea what started it either. I had this problem before when we >>> lived in Springfield, MO. I got over heated and got hit with nausea every >>> day for a little more then 2 years then I awoke one morning and it was like >>> someone tu
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Jeanie, I take promethazine 25mg but I cut them in 1/4 because if I take the hole pill in makes me sleepy. 1/2 works better but that puts me into low gear. But it does take away the nausea. greenie In a message dated 1/30/2015 7:44:52 A.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Hi Greenie Sorry to hear you still have your nausea. Have you tried Meclizine ? I find it works better than compozine. My nausea is better since coming off hydrea. I am on my 5th day of ponatinib.I had blood work done yesterday. My WBC came down but the platelets keep going up. Still in the millions (1529) The doctor is baffled but dropped my ponatinib to 2 (15 mg) tablets daily. My skin is drying out and headaches have returned. This reminds me of Gleevec but it has many side effects. Just have to deal with them as usual. I hope everyone is good this morning. Prayers & Blessings Jeanie 18's 🐠🐠 On Jan 30, 2015, at 7:07 AM, Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: I all the good news was short termed, I woke up yesterday and the nausea came back so I'm thinking I may have picked up some bug. Grace she's O.K. time will tell. So far this morning I feel find but will see our the rest of the day goes. greenie In a message dated 1/29/2015 9:51:44 P.M. Eastern Standard Time, _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) writes: YEAH FOR GOOD NEWS :) Beth -Original Message- From: Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Tue, Jan 27, 2015 4:59 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Well, I have good news. We both woke up today, Grace was O. K. and later on into the day I'm feeling much better. Tomorrow well tell the truth. I'll let you all know and Thanks for thinking of us both. We all are one hell of a team, we should have our own Superbowl.. greenie In a message dated 1/27/2015 1:32:57 P.M. Eastern Standard Time, _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) writes: maybe you both have a bit of a virus or bug? Hope that's all it is and you both will feel better soon. It does seem odd when all of a sudden after so many years you get a symptom like nausea. Be well...thinking of you and everyone else today... Beth -Original Message- From: Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Mon, Jan 26, 2015 5:09 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Hi Beth, I'm starting to think it's not the Gleevec that's given me the nausea because my wife started to get the nausea also. Could be Florida weather, tree's, flowers, etc. greenie In a message dated 1/26/2015 6:05:17 P.M. Eastern Standard Time, _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) writes: Greenie, Remember, if you do need to swap a TKILots of good options with low doses because you have done so well for so long on Gleevec...you are a warrior. My blood counts are O.K...but I appreciate the anxiety of all this for all of us..it's one of the harder parts to manage well. Good luck to you! Beth -Original Message- From: Joan <_lilako19@gmail.com_ (mailto:lilak...@gmail.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Mon, Jan 26, 2015 5:01 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Greenie, I had to quit Gleevec because it was messing with my kidneys. Now I take Tasinga. Joan On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work som
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Greenie Sorry to hear you still have your nausea. Have you tried Meclizine ? I find it works better than compozine. My nausea is better since coming off hydrea. I am on my 5th day of ponatinib.I had blood work done yesterday. My WBC came down but the platelets keep going up. Still in the millions (1529) The doctor is baffled but dropped my ponatinib to 2 (15 mg) tablets daily. My skin is drying out and headaches have returned. This reminds me of Gleevec but it has many side effects. Just have to deal with them as usual. I hope everyone is good this morning. Prayers & Blessings Jeanie 18's 🐠🐠 > On Jan 30, 2015, at 7:07 AM, Myvety2k via CMLHope > wrote: > > I all the good news was short termed, I woke up yesterday and the nausea came > back so I'm thinking I may have picked up some bug. Grace she's O.K. time > will tell. So far this morning I feel find but will see our the rest of the > day goes. > > greenie > > In a message dated 1/29/2015 9:51:44 P.M. Eastern Standard Time, > cmlhope@googlegroups.com writes: > YEAH FOR GOOD NEWS :) Beth > > > -Original Message- > From: Myvety2k via CMLHope > To: cmlhope > Sent: Tue, Jan 27, 2015 4:59 pm > Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? > > Well, I have good news. We both woke up today, Grace was O. K. and later on > into the day I'm feeling much better. Tomorrow well tell the truth. I'll > let you all know and Thanks for thinking of us both. We all are one hell of > a team, we should have our own Superbowl.. > > greenie > > In a message dated 1/27/2015 1:32:57 P.M. Eastern Standard Time, > cmlhope@googlegroups.com writes: > maybe you both have a bit of a virus or bug? Hope that's all it is and you > both will feel better soon. It does seem odd when all of a sudden after so > many years you get a symptom like nausea. > Be well...thinking of you and everyone else today... > > Beth > > -----Original Message- > From: Myvety2k via CMLHope > To: cmlhope > Sent: Mon, Jan 26, 2015 5:09 pm > Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? > > Hi Beth, I'm starting to think it's not the Gleevec that's given me the > nausea because my wife started to get the nausea also. Could be Florida > weather, tree's, flowers, etc. > > greenie > > In a message dated 1/26/2015 6:05:17 P.M. Eastern Standard Time, > cmlhope@googlegroups.com writes: > Greenie, Remember, if you do need to swap a TKILots of good options with > low doses because youhave done so well for so long on Gleevec...you > are a warrior. My blood counts are O.K...but I appreciate the anxiety of all > this for all of us..it's one of the harder parts to manage well. Good luck to > you! Beth > > > -Original Message- > From: Joan > To: cmlhope > Sent: Mon, Jan 26, 2015 5:01 pm > Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? > > Greenie, > I had to quit Gleevec because it was messing with my kidneys. Now I take > Tasinga. > Joan > >> On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: >> Hi to my friends in our group, well I've been on Gleevec for 15 years and >> 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm >> taking some promethazine that helps some what but it's not a fun thing. I >> have no idea what started it either. I had this problem before when we >> lived in Springfield, MO. I got over heated and got hit with nausea every >> day for a little more then 2 years then I awoke one morning and it was like >> someone turned off the switch and it was gone. This time of the year it's >> not hot here so I know that's not what caused this problem. >> >> I'm going to take a Gleevec break for a week or two to clean out my system >> and hope that I get back to normal. I did this before about 6 years ago >> when I had a sinus infection and the doctor back in Indiana put me on and >> anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. >> After getting blood work some cancer cells did show back up in my blood work >> but after stating Gleevec again the next test showed that I was clean again. >> >> My doctor at that time was doctor Tallman and he gave me a call and said >> "well if it worked before it will work again" and that was that. So I have >> my fingers crossed to see what happens. I can't stand this nausea problem, >> my heart goes out to the women that have babies and have to put up w
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
I all the good news was short termed, I woke up yesterday and the nausea came back so I'm thinking I may have picked up some bug. Grace she's O.K. time will tell. So far this morning I feel find but will see our the rest of the day goes. greenie In a message dated 1/29/2015 9:51:44 P.M. Eastern Standard Time, cmlhope@googlegroups.com writes: YEAH FOR GOOD NEWS :) Beth -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Tue, Jan 27, 2015 4:59 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Well, I have good news. We both woke up today, Grace was O. K. and later on into the day I'm feeling much better. Tomorrow well tell the truth. I'll let you all know and Thanks for thinking of us both. We all are one hell of a team, we should have our own Superbowl.. greenie In a message dated 1/27/2015 1:32:57 P.M. Eastern Standard Time, _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) writes: maybe you both have a bit of a virus or bug? Hope that's all it is and you both will feel better soon. It does seem odd when all of a sudden after so many years you get a symptom like nausea. Be well...thinking of you and everyone else today... Beth -Original Message- From: Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Mon, Jan 26, 2015 5:09 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Hi Beth, I'm starting to think it's not the Gleevec that's given me the nausea because my wife started to get the nausea also. Could be Florida weather, tree's, flowers, etc. greenie In a message dated 1/26/2015 6:05:17 P.M. Eastern Standard Time, _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) writes: Greenie, Remember, if you do need to swap a TKILots of good options with low doses because you have done so well for so long on Gleevec...you are a warrior. My blood counts are O.K...but I appreciate the anxiety of all this for all of us..it's one of the harder parts to manage well. Good luck to you! Beth -Original Message- From: Joan <_lilako19@gmail.com_ (mailto:lilak...@gmail.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Mon, Jan 26, 2015 5:01 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Greenie, I had to quit Gleevec because it was messing with my kidneys. Now I take Tasinga. Joan On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work some cancer cells did show back up in my blood work but after stating Gleevec again the next test showed that I was clean again. My doctor at that time was doctor Tallman and he gave me a call and said "well if it worked before it will work again" and that was that. So I have my fingers crossed to see what happens. I can't stand this nausea problem, my heart goes out to the women that have babies and have to put up with nausea. I just hope it's the Gleevec again and not something else. My blood counts are O. K. so I'm not worried about that. This does not help my anxiety problems Will keep you all up to date as how things go. greenie -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) For more options, visit this group at http://groups.google.com/group/CMLHope --- You receive
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
YEAH FOR GOOD NEWS :) Beth -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Tue, Jan 27, 2015 4:59 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Well, I have good news. We both woke up today, Grace was O. K. and later on into the day I'm feeling much better. Tomorrow well tell the truth. I'll let you all know and Thanks for thinking of us both. We all are one hell of a team, we should have our own Superbowl.. greenie In a message dated 1/27/2015 1:32:57 P.M. Eastern Standard Time, cmlhope@googlegroups.com writes: maybe you both have a bit of a virus or bug? Hope that's all it is and you both will feel better soon. It does seem odd when all of a sudden after so many years you get a symptom like nausea. Be well...thinking of you and everyone else today... Beth -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Mon, Jan 26, 2015 5:09 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Hi Beth, I'm starting to think it's not the Gleevec that's given me the nausea because my wife started to get the nausea also.Could be Florida weather, tree's, flowers, etc. greenie In a message dated 1/26/2015 6:05:17 P.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Greenie, Remember, if you do need to swap a TKILots of good options with low doses because you have done so well for so long on Gleevec...you are a warrior. My blood counts are O.K...but I appreciate the anxiety of all this for all of us..it's one of the harder parts to manage well. Good luck to you! Beth -Original Message- From: Joan To: cmlhope Sent: Mon, Jan 26, 2015 5:01 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Greenie, I had to quit Gleevec because it was messing with my kidneys. Now I take Tasinga. Joan On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work some cancer cells did show back up in my blood work but after stating Gleevec again the next test showed that I was clean again. My doctor at that time was doctor Tallman and he gave me a call and said "well if it worked before it will work again" and that was that. So I have my fingers crossed to see what happens. I can't stand this nausea problem, my heart goes out to the women that have babies and have to put up with nausea. I just hope it's the Gleevec again and not something else. My blood counts are O. K. so I'm not worried about that. This does not help my anxiety problems Will keep you all up to date as how things go. greenie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send emai
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Well, I have good news. We both woke up today, Grace was O. K. and later on into the day I'm feeling much better. Tomorrow well tell the truth. I'll let you all know and Thanks for thinking of us both. We all are one hell of a team, we should have our own Superbowl.. greenie In a message dated 1/27/2015 1:32:57 P.M. Eastern Standard Time, cmlhope@googlegroups.com writes: maybe you both have a bit of a virus or bug? Hope that's all it is and you both will feel better soon. It does seem odd when all of a sudden after so many years you get a symptom like nausea. Be well...thinking of you and everyone else today... Beth -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Mon, Jan 26, 2015 5:09 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Hi Beth, I'm starting to think it's not the Gleevec that's given me the nausea because my wife started to get the nausea also. Could be Florida weather, tree's, flowers, etc. greenie In a message dated 1/26/2015 6:05:17 P.M. Eastern Standard Time, _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) writes: Greenie, Remember, if you do need to swap a TKILots of good options with low doses because you have done so well for so long on Gleevec...you are a warrior. My blood counts are O.K...but I appreciate the anxiety of all this for all of us..it's one of the harder parts to manage well. Good luck to you! Beth -Original Message- From: Joan <_lilako19@gmail.com_ (mailto:lilak...@gmail.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Mon, Jan 26, 2015 5:01 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Greenie, I had to quit Gleevec because it was messing with my kidneys. Now I take Tasinga. Joan On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work some cancer cells did show back up in my blood work but after stating Gleevec again the next test showed that I was clean again. My doctor at that time was doctor Tallman and he gave me a call and said "well if it worked before it will work again" and that was that. So I have my fingers crossed to see what happens. I can't stand this nausea problem, my heart goes out to the women that have babies and have to put up with nausea. I just hope it's the Gleevec again and not something else. My blood counts are O. K. so I'm not worried about that. This does not help my anxiety problems Will keep you all up to date as how things go. greenie -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
maybe you both have a bit of a virus or bug? Hope that's all it is and you both will feel better soon. It does seem odd when all of a sudden after so many years you get a symptom like nausea. Be well...thinking of you and everyone else today... Beth -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Mon, Jan 26, 2015 5:09 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Hi Beth, I'm starting to think it's not the Gleevec that's given me the nausea because my wife started to get the nausea also. Could be Florida weather, tree's, flowers, etc. greenie In a message dated 1/26/2015 6:05:17 P.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Greenie, Remember, if you do need to swap a TKILots of good options with low doses because you have done so well for so long on Gleevec...you are a warrior. My blood counts are O.K...but I appreciate the anxiety of all this for all of us..it's one of the harder parts to manage well. Good luck to you! Beth -Original Message- From: Joan To: cmlhope Sent: Mon, Jan 26, 2015 5:01 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Greenie, I had to quit Gleevec because it was messing with my kidneys. Now I take Tasinga. Joan On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work some cancer cells did show back up in my blood work but after stating Gleevec again the next test showed that I was clean again. My doctor at that time was doctor Tallman and he gave me a call and said "well if it worked before it will work again" and that was that. So I have my fingers crossed to see what happens. I can't stand this nausea problem, my heart goes out to the women that have babies and have to put up with nausea. I just hope it's the Gleevec again and not something else. My blood counts are O. K. so I'm not worried about that. This does not help my anxiety problems Will keep you all up to date as how things go. greenie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
The problem is no one really knows how these drugs affect our tkis. They told me the drugs I was taking were ok with ponatinib.I was told not to get any vaccinations. It is a hot and miss for sure. Prayers & Blessings Jeanie 18's 🐠🐠 > On Jan 27, 2015, at 8:25 AM, Myvety2k via CMLHope > wrote: > > Yes, I did get my flu shot in September, plus last week when I saw my regular > doctor here he gave me a Prevnar-13 shot. I hope that is not the reason I'm > having the nausea problem. He, said that he checked is computer to make sure > it would not interfere with my Gleevec. Good luck on that one. > > greenie > > In a message dated 1/27/2015 7:39:23 A.M. Eastern Standard Time, > cmlhope@googlegroups.com writes: > Do you get your flu shots? > They tell us to stay away from crowds--but how is that possible? > Drink lots of fluids and stay warm. > > > Prayers & Blessings Jeanie 18's 🐠🐠 > >> On Jan 27, 2015, at 7:17 AM, Myvety2k via CMLHope >> wrote: >> >> Boy, I hope so like the rest of us with CML we don't need any other >> problems. One of the problems down here in Florida you have a lot of people >> that come down here for the winter and some of them are sick and they bring >> that with them when they arrive. We carry hand wipes everywhere we go but >> you can't say locked up in your home all winter. >> >> >> greenie >> >> >> In a message dated 1/27/2015 6:41:36 A.M. Eastern Standard Time, >> cmlhope@googlegroups.com writes: >> Hi Greenie, sounds like a flu--a lot is going around now. >> Hang in there! >> Jeanie<3 >> >> In a message dated 1/26/2015 6:06:31 P.M. Eastern Standard Time, >> cmlhope@googlegroups.com writes: >> Hi Joan, I don't know what's going on because a few days later Grace started >> to get nausea also and we don't have the flu. No fever, etc. just a little >> nausea, haft to give it a few more days and see what happens. >> >> greenie >> >> In a message dated 1/26/2015 6:01:23 P.M. Eastern Standard Time, >> lilak...@gmail.com writes: >> Greenie, >> I had to quit Gleevec because it was messing with my kidneys. Now I take >> Tasinga. >> Joan >> >>> On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: >>> Hi to my friends in our group, well I've been on Gleevec for 15 years and >>> 14 days all of a sudden for the last 4 days I'm having nausea problems. >>> I'm taking some promethazine that helps some what but it's not a fun thing. >>> I have no idea what started it either. I had this problem before when we >>> lived in Springfield, MO. I got over heated and got hit with nausea every >>> day for a little more then 2 years then I awoke one morning and it was like >>> someone turned off the switch and it was gone. This time of the year it's >>> not hot here so I know that's not what caused this problem. >>> >>> I'm going to take a Gleevec break for a week or two to clean out my system >>> and hope that I get back to normal. I did this before about 6 years ago >>> when I had a sinus infection and the doctor back in Indiana put me on and >>> anabolic that interfered with my Gleevec so we stopped Gleevec >>> for 26 days. After getting blood work some cancer cells did show back up >>> in my blood work but after stating Gleevec again the next test showed that >>> I was clean again. >>> >>> My doctor at that time was doctor Tallman and he gave me a call and said >>> "well if it worked before it will work again" and that was that. So I have >>> my fingers crossed to see what happens. I can't stand this nausea problem, >>> my heart goes out to the women that have babies and have to put up with >>> nausea. I just hope it's the Gleevec again and not something else. My >>> blood counts are O. K. so I'm not worried about that. This does not help >>> my anxiety problems >>> >>> Will keep you all up to date as how things go. >>> >>> greenie >> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> - >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> For more options, visit this group at http://groups.google.com/group/CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to cmlhope+unsubscr...@googlegroups.com. >> For more options, visit https://groups.google.com/d/optout. >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> - >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to CMLHope@googlegroups.com >> To unsubscribe fr
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Yes, I did get my flu shot in September, plus last week when I saw my regular doctor here he gave me a Prevnar-13 shot. I hope that is not the reason I'm having the nausea problem. He, said that he checked is computer to make sure it would not interfere with my Gleevec. Good luck on that one. greenie In a message dated 1/27/2015 7:39:23 A.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Do you get your flu shots? They tell us to stay away from crowds--but how is that possible? Drink lots of fluids and stay warm. Prayers & Blessings Jeanie 18's 🐠🐠 On Jan 27, 2015, at 7:17 AM, Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Boy, I hope so like the rest of us with CML we don't need any other problems. One of the problems down here in Florida you have a lot of people that come down here for the winter and some of them are sick and they bring that with them when they arrive. We carry hand wipes everywhere we go but you can't say locked up in your home all winter. greenie In a message dated 1/27/2015 6:41:36 A.M. Eastern Standard Time, _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) writes: Hi Greenie, sounds like a flu--a lot is going around now. Hang in there! Jeanie<3 In a message dated 1/26/2015 6:06:31 P.M. Eastern Standard Time, _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) writes: Hi Joan, I don't know what's going on because a few days later Grace started to get nausea also and we don't have the flu. No fever, etc. just a little nausea, haft to give it a few more days and see what happens. greenie In a message dated 1/26/2015 6:01:23 P.M. Eastern Standard Time, _lilako19@gmail.com_ (mailto:lilak...@gmail.com) writes: Greenie, I had to quit Gleevec because it was messing with my kidneys. Now I take Tasinga. Joan On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work some cancer cells did show back up in my blood work but after stating Gleevec again the next test showed that I was clean again. My doctor at that time was doctor Tallman and he gave me a call and said "well if it worked before it will work again" and that was that. So I have my fingers crossed to see what happens. I can't stand this nausea problem, my heart goes out to the women that have babies and have to put up with nausea. I just hope it's the Gleevec again and not something else. My blood counts are O. K. so I'm not worried about that. This does not help my anxiety problems Will keep you all up to date as how things go. greenie -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) For more options, visit this group at http://groups.google.com/grou
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Do you get your flu shots? They tell us to stay away from crowds--but how is that possible? Drink lots of fluids and stay warm. Prayers & Blessings Jeanie 18's 🐠🐠 > On Jan 27, 2015, at 7:17 AM, Myvety2k via CMLHope > wrote: > > Boy, I hope so like the rest of us with CML we don't need any other problems. > One of the problems down here in Florida you have a lot of people that come > down here for the winter and some of them are sick and they bring that with > them when they arrive. We carry hand wipes everywhere we go but you can't > say locked up in your home all winter. > > > greenie > > > In a message dated 1/27/2015 6:41:36 A.M. Eastern Standard Time, > cmlhope@googlegroups.com writes: > Hi Greenie, sounds like a flu--a lot is going around now. > Hang in there! > Jeanie<3 > > In a message dated 1/26/2015 6:06:31 P.M. Eastern Standard Time, > cmlhope@googlegroups.com writes: > Hi Joan, I don't know what's going on because a few days later Grace started > to get nausea also and we don't have the flu. No fever, etc. just a little > nausea, haft to give it a few more days and see what happens. > > greenie > > In a message dated 1/26/2015 6:01:23 P.M. Eastern Standard Time, > lilak...@gmail.com writes: > Greenie, > I had to quit Gleevec because it was messing with my kidneys. Now I take > Tasinga. > Joan > >> On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: >> Hi to my friends in our group, well I've been on Gleevec for 15 years and >> 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm >> taking some promethazine that helps some what but it's not a fun thing. I >> have no idea what started it either. I had this problem before when we >> lived in Springfield, MO. I got over heated and got hit with nausea every >> day for a little more then 2 years then I awoke one morning and it was like >> someone turned off the switch and it was gone. This time of the year it's >> not hot here so I know that's not what caused this problem. >> >> I'm going to take a Gleevec break for a week or two to clean out my system >> and hope that I get back to normal. I did this before about 6 years ago >> when I had a sinus infection and the doctor back in Indiana put me on and >> anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. >> After getting blood work some cancer cells did show back up in my blood work >> but after stating Gleevec again the next test showed that I was clean again. >> >> My doctor at that time was doctor Tallman and he gave me a call and said >> "well if it worked before it will work again" and that was that. So I have >> my fingers crossed to see what happens. I can't stand this nausea problem, >> my heart goes out to the women that have babies and have to put up with >> nausea. I just hope it's the Gleevec again and not something else. >> My blood counts are O. K. so I'm not worried about that. This does not >> help my anxiety problems >> >> Will keep you all up to date as how things go. >> >> greenie > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at http://gr
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Boy, I hope so like the rest of us with CML we don't need any other problems. One of the problems down here in Florida you have a lot of people that come down here for the winter and some of them are sick and they bring that with them when they arrive. We carry hand wipes everywhere we go but you can't say locked up in your home all winter. greenie In a message dated 1/27/2015 6:41:36 A.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Hi Greenie, sounds like a flu--a lot is going around now. Hang in there! Jeanie<3 In a message dated 1/26/2015 6:06:31 P.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Hi Joan, I don't know what's going on because a few days later Grace started to get nausea also and we don't have the flu. No fever, etc. just a little nausea, haft to give it a few more days and see what happens. greenie In a message dated 1/26/2015 6:01:23 P.M. Eastern Standard Time, lilak...@gmail.com writes: Greenie, I had to quit Gleevec because it was messing with my kidneys. Now I take Tasinga. Joan On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work some cancer cells did show back up in my blood work but after stating Gleevec again the next test showed that I was clean again. My doctor at that time was doctor Tallman and he gave me a call and said "well if it worked before it will work again" and that was that. So I have my fingers crossed to see what happens. I can't stand this nausea problem, my heart goes out to the women that have babies and have to put up with nausea. I just hope it's the Gleevec again and not something else. My blood counts are O. K. so I'm not worried about that. This does not help my anxiety problems Will keep you all up to date as how things go. greenie -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsu
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Good luck on Tasigna Joan! Blessings And Prayers 18's Love In a message dated 1/26/2015 6:01:20 P.M. Eastern Standard Time, lilak...@gmail.com writes: Greenie, I had to quit Gleevec because it was messing with my kidneys. Now I take Tasinga. Joan On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work some cancer cells did show back up in my blood work but after stating Gleevec again the next test showed that I was clean again. My doctor at that time was doctor Tallman and he gave me a call and said "well if it worked before it will work again" and that was that. So I have my fingers crossed to see what happens. I can't stand this nausea problem, my heart goes out to the women that have babies and have to put up with nausea. I just hope it's the Gleevec again and not something else. My blood counts are O. K. so I'm not worried about that. This does not help my anxiety problems Will keep you all up to date as how things go. greenie -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Greenie, sounds like a flu--a lot is going around now. Hang in there! Jeanie<3 In a message dated 1/26/2015 6:06:31 P.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Hi Joan, I don't know what's going on because a few days later Grace started to get nausea also and we don't have the flu. No fever, etc. just a little nausea, haft to give it a few more days and see what happens. greenie In a message dated 1/26/2015 6:01:23 P.M. Eastern Standard Time, lilak...@gmail.com writes: Greenie, I had to quit Gleevec because it was messing with my kidneys. Now I take Tasinga. Joan On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work some cancer cells did show back up in my blood work but after stating Gleevec again the next test showed that I was clean again. My doctor at that time was doctor Tallman and he gave me a call and said "well if it worked before it will work again" and that was that. So I have my fingers crossed to see what happens. I can't stand this nausea problem, my heart goes out to the women that have babies and have to put up with nausea. I just hope it's the Gleevec again and not something else. My blood counts are O. K. so I'm not worried about that. This does not help my anxiety problems Will keep you all up to date as how things go. greenie -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Beth, I'm starting to think it's not the Gleevec that's given me the nausea because my wife started to get the nausea also. Could be Florida weather, tree's, flowers, etc. greenie In a message dated 1/26/2015 6:05:17 P.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Greenie, Remember, if you do need to swap a TKILots of good options with low doses because you have done so well for so long on Gleevec...you are a warrior. My blood counts are O.K...but I appreciate the anxiety of all this for all of us..it's one of the harder parts to manage well. Good luck to you! Beth -Original Message- From: Joan To: cmlhope Sent: Mon, Jan 26, 2015 5:01 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Greenie, I had to quit Gleevec because it was messing with my kidneys. Now I take Tasinga. Joan On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work some cancer cells did show back up in my blood work but after stating Gleevec again the next test showed that I was clean again. My doctor at that time was doctor Tallman and he gave me a call and said "well if it worked before it will work again" and that was that. So I have my fingers crossed to see what happens. I can't stand this nausea problem, my heart goes out to the women that have babies and have to put up with nausea. I just hope it's the Gleevec again and not something else. My blood counts are O. K. so I'm not worried about that. This does not help my anxiety problems Will keep you all up to date as how things go. greenie -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Joan, I don't know what's going on because a few days later Grace started to get nausea also and we don't have the flu. No fever, etc. just a little nausea, haft to give it a few more days and see what happens. greenie In a message dated 1/26/2015 6:01:23 P.M. Eastern Standard Time, lilak...@gmail.com writes: Greenie, I had to quit Gleevec because it was messing with my kidneys. Now I take Tasinga. Joan On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work some cancer cells did show back up in my blood work but after stating Gleevec again the next test showed that I was clean again. My doctor at that time was doctor Tallman and he gave me a call and said "well if it worked before it will work again" and that was that. So I have my fingers crossed to see what happens. I can't stand this nausea problem, my heart goes out to the women that have babies and have to put up with nausea. I just hope it's the Gleevec again and not something else. My blood counts are O. K. so I'm not worried about that. This does not help my anxiety problems Will keep you all up to date as how things go. greenie -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Greenie, Remember, if you do need to swap a TKILots of good options with low doses because you have done so well for so long on Gleevec...you are a warrior. My blood counts are O.K...but I appreciate the anxiety of all this for all of us..it's one of the harder parts to manage well. Good luck to you! Beth -Original Message- From: Joan To: cmlhope Sent: Mon, Jan 26, 2015 5:01 pm Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Greenie, I had to quit Gleevec because it was messing with my kidneys. Now I take Tasinga. Joan On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work some cancer cells did show back up in my blood work but after stating Gleevec again the next test showed that I was clean again. My doctor at that time was doctor Tallman and he gave me a call and said "well if it worked before it will work again" and that was that. So I have my fingers crossed to see what happens. I can't stand this nausea problem, my heart goes out to the women that have babies and have to put up with nausea. I just hope it's the Gleevec again and not something else. My blood counts are O. K. so I'm not worried about that. This does not help my anxiety problems Will keep you all up to date as how things go. greenie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Greenie, I had to quit Gleevec because it was messing with my kidneys. Now I take Tasinga. Joan On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie wrote: > > Hi to my friends in our group, well I've been on Gleevec for 15 years > and 14 days all of a sudden for the last 4 days I'm having nausea > problems. I'm taking some promethazine that helps some what but it's not a > fun thing. I have no idea what started it either. I had this problem > before when we lived in Springfield, MO. I got over heated and got hit with > nausea every day for a little more then 2 years then I awoke one morning > and it was like someone turned off the switch and it was gone. This time > of the year it's not hot here so I know that's not what caused this problem. > > I'm going to take a Gleevec break for a week or two to clean out my system > and hope that I get back to normal. I did this before about 6 years ago > when I had a sinus infection and the doctor back in Indiana put me on and > anabolic that interfered with my Gleevec so we stopped Gleevec for 26 > days. After getting blood work some cancer cells did show back up in my > blood work but after stating Gleevec again the next test showed that I was > clean again. > > My doctor at that time was doctor Tallman and he gave me a call and said > "well if it worked before it will work again" and that was that. So I have > my fingers crossed to see what happens. I can't stand this nausea problem, > my heart goes out to the women that have babies and have to put up with > nausea. I just hope it's the Gleevec again and not something else. My > blood counts are O. K. so I'm not worried about that. This does not help > my anxiety problems > > Will keep you all up to date as how things go. > > greenie > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Richard and hang in there. I wake up with nausea every morning which I think is the hydrea. Do you eat a big meal with gleevec? I know I had to and no spicy foods. Your success on gleevec has been great. It quit on me after 5 years. You could just have a bug. Good luck and blessings. Jeanie Sent from my iPhone > On Jan 24, 2015, at 10:56 AM, Myvety2k via CMLHope > wrote: > > Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 > days all of a sudden for the last 4 days I'm having nausea problems. I'm > taking some promethazine that helps some what but it's not a fun thing. I > have no idea what started it either. I had this problem before when we lived > in Springfield, MO. I got over heated and got hit with nausea every day for a > little more then 2 years then I awoke one morning and it was like someone > turned off the switch and it was gone. This time of the year it's not hot > here so I know that's not what caused this problem. > > I'm going to take a Gleevec break for a week or two to clean out my system > and hope that I get back to normal. I did this before about 6 years ago when > I had a sinus infection and the doctor back in Indiana put me on and anabolic > that interfered with my Gleevec so we stopped Gleevec for 26 days. After > getting blood work some cancer cells did show back up in my blood work but > after stating Gleevec again the next test showed that I was clean again. > > My doctor at that time was doctor Tallman and he gave me a call and said > "well if it worked before it will work again" and that was that. So I have > my fingers crossed to see what happens. I can't stand this nausea problem, > my heart goes out to the women that have babies and have to put up with > nausea. I just hope it's the Gleevec again and not something else. My blood > counts are O. K. so I'm not worried about that. This does not help my > anxiety problems > > Will keep you all up to date as how things go. > > greenie > > In a message dated 1/23/2015 11:35:02 P.M. Eastern Standard Time, > rbhuffm...@gmail.com writes: > Seventeen and on my first adventure this wonderful world we live in. > > Richard H. > >> On Friday, January 23, 2015 at 5:38:47 AM UTC-6, Icandoallttc wrote: >> That's cute Richard--how old were you? >> My IV went in good-no swelling. >> This morning I am sick-- sore throat and mucus. >> Glad everything went good Sherri but couldn't they give you something for >> pain?? >> Blessings Jeanie >> >> Sent from my iPhone >> >> On Jan 23, 2015, at 12:03 AM, Richard H wrote: >> >> May I add my sea story of needles, I don't like needles but do not have a >> phobia. When I arrived at boot camp the first thing was get our shots. We >> walked through a line getting shots in both arms as mentioned. They were >> using hugh syringes and had large pillows with the needles that was changed >> while we were stepping in front of them. Someone was calling a slow cadence >> of step, step. As each recruit stepped He was given a shot in each arm. All >> of a sudden the corpsman I was getting ready to step in front of yelled >> "BRING BACK MY NEEDLE." The recruit in fount of me had it hanging in his >> arm. When I received the 4 pricks for allergy testing I then had to sit in >> the dentist chair I promptly passed out. >> >> Richard H. >> >> >> >> >> On Thursday, January 22, 2015 at 6:50:17 AM UTC-6, greenie wrote: >> Jeanie, Needles lord knows I hate them. The first time I had a blood test >> it was to get married. My Doctor lived 3 blocks away form me and I worked >> for him when I was in High School. They did the blood work and he walked in >> after and took one look at me and he put is hand behind my head and pushed >> it down and told me to pushed as hard as I could to keep me from passing out. >> >> Then when I went into the Navy I was on active duty for a year and a haft >> they found out that I didn't get any of my shots. Well you know what >> happened then, I received them all at once, both arms. So years go by and I >> end up with CML and we all know about needles. Yes, some are good and some >> are bad. I had to get blood work this Monday and I think the lady took the >> needle outside and scraped it on the pavement plus I think it was square and >> bent. I think it when through my arm and out the other side. >> >> And the first BMB all they gave me it was so much fun that I asked them to >> do another one. Ha, Ha. After about 10 or 11 of them I asked to be put into >> lala land which they did but I had to have someone drive me home. My wife >> has to give me a shot of testosterone every two weeks, the needle is 1/1/2 >> in long another fun shot. So for me they do the molecular blood work and no >> more BMB. Thank you. >> >> Take care and hang in their, >> >> greenie >> >> In a message dated 1/22/2015 6:08:12 A.M. Eastern Standard Time, >> cml...@go
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work some cancer cells did show back up in my blood work but after stating Gleevec again the next test showed that I was clean again. My doctor at that time was doctor Tallman and he gave me a call and said "well if it worked before it will work again" and that was that. So I have my fingers crossed to see what happens. I can't stand this nausea problem, my heart goes out to the women that have babies and have to put up with nausea. I just hope it's the Gleevec again and not something else. My blood counts are O. K. so I'm not worried about that. This does not help my anxiety problems Will keep you all up to date as how things go. greenie In a message dated 1/23/2015 11:35:02 P.M. Eastern Standard Time, rbhuffm...@gmail.com writes: Seventeen and on my first adventure this wonderful world we live in. Richard H. On Friday, January 23, 2015 at 5:38:47 AM UTC-6, Icandoallttc wrote: That's cute Richard--how old were you? My IV went in good-no swelling. This morning I am sick-- sore throat and mucus. Glad everything went good Sherri but couldn't they give you something for pain?? Blessings Jeanie Sent from my iPhone On Jan 23, 2015, at 12:03 AM, Richard H <_rbhuf...@gmail.com_ (javascript:) > wrote: May I add my sea story of needles, I don't like needles but do not have a phobia. When I arrived at boot camp the first thing was get our shots. We walked through a line getting shots in both arms as mentioned. They were using hugh syringes and had large pillows with the needles that was changed while we were stepping in front of them. Someone was calling a slow cadence of step, step. As each recruit stepped He was given a shot in each arm. All of a sudden the corpsman I was getting ready to step in front of yelled "BRING BACK MY NEEDLE." The recruit in fount of me had it hanging in his arm. When I received the 4 pricks for allergy testing I then had to sit in the dentist chair I promptly passed out. Richard H. On Thursday, January 22, 2015 at 6:50:17 AM UTC-6, greenie wrote: Jeanie, Needles lord knows I hate them. The first time I had a blood test it was to get married. My Doctor lived 3 blocks away form me and I worked for him when I was in High School. They did the blood work and he walked in after and took one look at me and he put is hand behind my head and pushed it down and told me to pushed as hard as I could to keep me from passing out. Then when I went into the Navy I was on active duty for a year and a haft they found out that I didn't get any of my shots. Well you know what happened then, I received them all at once, both arms. So years go by and I end up with CML and we all know about needles. Yes, some are good and some are bad. I had to get blood work this Monday and I think the lady took the needle outside and scraped it on the pavement plus I think it was square and bent. I think it when through my arm and out the other side. And the first BMB all they gave me it was so much fun that I asked them to do another one. Ha, Ha. After about 10 or 11 of them I asked to be put into lala land which they did but I had to have someone drive me home. My wife has to give me a shot of testosterone every two weeks, the needle is 1/1/2 in long another fun shot. So for me they do the molecular blood work and no more BMB. Thank you. Take care and hang in their, greenie In a message dated 1/22/2015 6:08:12 A.M. Eastern Standard Time, cml...@googlegroups.com writes: Hi Marty. How are you? I am going to have the endoscopy today. First I will go to the blood area and have blood checked. Then to dr for consultation. Then to have the endoscopy. Long day. Needles are no fun but we get used to them. Some draws are good some bad. Pray for me and all in need. Love Jeanie Sent from my iPhone On Jan 21, 2015, at 7:52 AM, Marty Gartenberg wrote: Hi Jeanie, You have been through so much it's about time that you got a break or two.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Richard, You got that key word right... LIVE Hey, bring back that needle[?] Being on the line myself I can just picture that. 18's, Marty On Fri, Jan 23, 2015 at 11:35 PM, Richard H wrote: > Seventeen and on my first adventure this wonderful world we live in. > > Richard H. > > On Friday, January 23, 2015 at 5:38:47 AM UTC-6, Icandoallttc wrote: > >> That's cute Richard--how old were you? >> My IV went in good-no swelling. >> This morning I am sick-- sore throat and mucus. >> Glad everything went good Sherri but couldn't they give you something for >> pain?? >> Blessings Jeanie >> >> Sent from my iPhone >> >> On Jan 23, 2015, at 12:03 AM, Richard H wrote: >> >> May I add my sea story of needles, I don't like needles but do not have >> a phobia. When I arrived at boot camp the first thing was get our shots. >> We walked through a line getting shots in both arms as mentioned. They >> were using hugh syringes and had large pillows with the needles that was >> changed while we were stepping in front of them. Someone was calling a slow >> cadence of step, step. As each recruit stepped He was given a shot in each >> arm. All of a sudden the corpsman I was getting ready to step in front of >> yelled "BRING BACK MY NEEDLE." The recruit in fount of me had it hanging >> in his arm. When I received the 4 pricks for allergy testing I then had to >> sit in the dentist chair I promptly passed out. >> >> Richard H. >> >> >> >> >> On Thursday, January 22, 2015 at 6:50:17 AM UTC-6, greenie wrote: >> >> Jeanie, Needles lord knows I hate them. The first time I had a blood >> test it was to get married. My Doctor lived 3 blocks away form me and I >> worked for him when I was in High School. They did the blood work and he >> walked in after and took one look at me and he put is hand behind my head >> and pushed it down and told me to pushed as hard as I could to keep me from >> passing out. >> >> Then when I went into the Navy I was on active duty for a year and a haft >> they found out that I didn't get any of my shots. Well you know what >> happened then, I received them all at once, both arms. So years go by and >> I end up with CML and we all know about needles. Yes, some are good and >> some are bad. I had to get blood work this Monday and I think the lady >> took the needle outside and scraped it on the pavement plus I think it was >> square and bent. I think it when through my arm and out the other side. >> >> And the first BMB all they gave me it was so much fun that I asked them >> to do another one. Ha, Ha. After about 10 or 11 of them I asked to be put >> into lala land which they did but I had to have someone drive me home. My >> wife has to give me a shot of testosterone every two weeks, the needle is >> 1/1/2 in long another fun shot. So for me they do the molecular blood work >> and no more BMB. Thank you. >> >> Take care and hang in their, >> >> greenie >> >> In a message dated 1/22/2015 6:08:12 A.M. Eastern Standard Time, >> cml...@googlegroups.com writes: >> >> Hi Marty. >> How are you? >> I am going to have the endoscopy today. First I will go to the blood >> area and have blood checked. Then to dr for consultation. Then to have the >> endoscopy. >> Long day. >> Needles are no fun but we get used to them. Some draws are good some >> bad. >> Pray for me and all in need. >> Love Jeanie >> >> Sent from my iPhone >> >> On Jan 21, 2015, at 7:52 AM, Marty Gartenberg wrote: >> >> Hi Jeanie, >> >> You have been through so much it's about time that you got a break or >> two. Not feeling that IV go in and no black and blue afterward then having >> a BMA with little or no pain. >> >> Well, two out of two ain't too bad is it? <360.gif> >> >> When I was a kid I had a phobia, and it was needles. I hated them that on >> the day my school was giving shots I told my mother that I was sick and >> couldn't go to school that day. So, she kept me home and I went to school >> the next day. Guess what? I got the shots that day. >> >> OK I'm in the army and in those days you had to walk down an isle to get >> all of your shots. They used a machine that looked like a gun and I thought >> it wouldn't hurt. Guess what? It did! >> >> Then when I was 45 years old I got CML and went for a bone marrow >> transplant. So many, many needles that I just got used to them. Then having >> 17 BMB's. It looks like needles and me are just like twins, always >> together. Not to mention that one of the aspiration needles break off and >> lodge in my illiac. So in go more needles and an in-cession follows to >> remove that needle. Then four stitches, of course using another needle. >> >> >> So about 4 years ago my kidneys fail and I go on dialysis. Two very large >> needles are stuck into my arm every Monday, Wednesday and Friday, and they >> stay in there for four hours. >> >> I wouldn't say that I have gotten used to them but maybe I just don't pay >> that much attention to them anymore. >> >> So much for any phob
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Seventeen and on my first adventure this wonderful world we live in. Richard H. On Friday, January 23, 2015 at 5:38:47 AM UTC-6, Icandoallttc wrote: > That's cute Richard--how old were you? > My IV went in good-no swelling. > This morning I am sick-- sore throat and mucus. > Glad everything went good Sherri but couldn't they give you something for > pain?? > Blessings Jeanie > > Sent from my iPhone > > On Jan 23, 2015, at 12:03 AM, Richard H > > wrote: > > May I add my sea story of needles, I don't like needles but do not have a > phobia. When I arrived at boot camp the first thing was get our shots. We > walked through a line getting shots in both arms as mentioned. They were > using hugh syringes and had large pillows with the needles that was changed > while we were stepping in front of them. Someone was calling a slow cadence > of step, step. As each recruit stepped He was given a shot in each arm. > All of a sudden the corpsman I was getting ready to step in front of yelled > "BRING BACK MY NEEDLE." The recruit in fount of me had it hanging in his > arm. When I received the 4 pricks for allergy testing I then had to sit in > the dentist chair I promptly passed out. > > Richard H. > > > > > On Thursday, January 22, 2015 at 6:50:17 AM UTC-6, greenie wrote: > > Jeanie, Needles lord knows I hate them. The first time I had a blood > test it was to get married. My Doctor lived 3 blocks away form me and I > worked for him when I was in High School. They did the blood work and he > walked in after and took one look at me and he put is hand behind my head > and pushed it down and told me to pushed as hard as I could to keep me from > passing out. > > Then when I went into the Navy I was on active duty for a year and a haft > they found out that I didn't get any of my shots. Well you know what > happened then, I received them all at once, both arms. So years go by and > I end up with CML and we all know about needles. Yes, some are good and > some are bad. I had to get blood work this Monday and I think the lady > took the needle outside and scraped it on the pavement plus I think it was > square and bent. I think it when through my arm and out the other side. > > And the first BMB all they gave me it was so much fun that I asked them to > do another one. Ha, Ha. After about 10 or 11 of them I asked to be put > into lala land which they did but I had to have someone drive me home. My > wife has to give me a shot of testosterone every two weeks, the needle is > 1/1/2 in long another fun shot. So for me they do the molecular blood work > and no more BMB. Thank you. > > Take care and hang in their, > > greenie > > In a message dated 1/22/2015 6:08:12 A.M. Eastern Standard Time, > cml...@googlegroups.com writes: > > Hi Marty. > How are you? > I am going to have the endoscopy today. First I will go to the blood area > and have blood checked. Then to dr for consultation. Then to have the > endoscopy. > Long day. > Needles are no fun but we get used to them. Some draws are good some bad. > > Pray for me and all in need. > Love Jeanie > > Sent from my iPhone > > On Jan 21, 2015, at 7:52 AM, Marty Gartenberg wrote: > > Hi Jeanie, > > You have been through so much it's about time that you got a break or two. > Not feeling that IV go in and no black and blue afterward then having a BMA > with little or no pain. > > Well, two out of two ain't too bad is it? <360.gif> > > When I was a kid I had a phobia, and it was needles. I hated them that on > the day my school was giving shots I told my mother that I was sick and > couldn't go to school that day. So, she kept me home and I went to school > the next day. Guess what? I got the shots that day. > > OK I'm in the army and in those days you had to walk down an isle to get > all of your shots. They used a machine that looked like a gun and I thought > it wouldn't hurt. Guess what? It did! > > Then when I was 45 years old I got CML and went for a bone marrow > transplant. So many, many needles that I just got used to them. Then having > 17 BMB's. It looks like needles and me are just like twins, always > together. Not to mention that one of the aspiration needles break off and > lodge in my illiac. So in go more needles and an in-cession follows to > remove that needle. Then four stitches, of course using another needle. > > > So about 4 years ago my kidneys fail and I go on dialysis. Two very large > needles are stuck into my arm every Monday, Wednesday and Friday, and they > stay in there for four hours. > > I wouldn't say that I have gotten used to them but maybe I just don't pay > that much attention to them anymore. > > So much for any phobias., but life goes on. Hopefully I will be getting > some more needles for a kidney transplant soon. Now doesn't that sound > warped from someone that had a phobia against needles? It just all depends > on how one looks at
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
That's cute Richard--how old were you? My IV went in good-no swelling. This morning I am sick-- sore throat and mucus. Glad everything went good Sherri but couldn't they give you something for pain?? Blessings Jeanie Sent from my iPhone > On Jan 23, 2015, at 12:03 AM, Richard H wrote: > > May I add my sea story of needles, I don't like needles but do not have a > phobia. When I arrived at boot camp the first thing was get our shots. We > walked through a line getting shots in both arms as mentioned. They were > using hugh syringes and had large pillows with the needles that was changed > while we were stepping in front of them. Someone was calling a slow cadence > of step, step. As each recruit stepped He was given a shot in each arm. All > of a sudden the corpsman I was getting ready to step in front of yelled > "BRING BACK MY NEEDLE." The recruit in fount of me had it hanging in his > arm. When I received the 4 pricks for allergy testing I then had to sit in > the dentist chair I promptly passed out. > > Richard H. > > > > >> On Thursday, January 22, 2015 at 6:50:17 AM UTC-6, greenie wrote: >> Jeanie, Needles lord knows I hate them. The first time I had a blood test >> it was to get married. My Doctor lived 3 blocks away form me and I worked >> for him when I was in High School. They did the blood work and he walked in >> after and took one look at me and he put is hand behind my head and pushed >> it down and told me to pushed as hard as I could to keep me from passing out. >> >> Then when I went into the Navy I was on active duty for a year and a haft >> they found out that I didn't get any of my shots. Well you know what >> happened then, I received them all at once, both arms. So years go by and I >> end up with CML and we all know about needles. Yes, some are good and some >> are bad. I had to get blood work this Monday and I think the lady took the >> needle outside and scraped it on the pavement plus I think it was square and >> bent. I think it when through my arm and out the other side. >> >> And the first BMB all they gave me it was so much fun that I asked them to >> do another one. Ha, Ha. After about 10 or 11 of them I asked to be put into >> lala land which they did but I had to have someone drive me home. My wife >> has to give me a shot of testosterone every two weeks, the needle is 1/1/2 >> in long another fun shot. So for me they do the molecular blood work and no >> more BMB. Thank you. >> >> Take care and hang in their, >> >> greenie >> >> In a message dated 1/22/2015 6:08:12 A.M. Eastern Standard Time, >> cml...@googlegroups.com writes: >> Hi Marty. >> How are you? >> I am going to have the endoscopy today. First I will go to the blood area >> and have blood checked. Then to dr for consultation. Then to have the >> endoscopy. >> Long day. >> Needles are no fun but we get used to them. Some draws are good some bad. >> Pray for me and all in need. >> Love Jeanie >> >> Sent from my iPhone >> >> On Jan 21, 2015, at 7:52 AM, Marty Gartenberg wrote: >> >> Hi Jeanie, >> >> You have been through so much it's about time that you got a break or two. >> Not feeling that IV go in and no black and blue afterward then having a BMA >> with little or no pain. >> >> Well, two out of two ain't too bad is it? <360.gif> >> >> When I was a kid I had a phobia, and it was needles. I hated them that on >> the day my school was giving shots I told my mother that I was sick and >> couldn't go to school that day. So, she kept me home and I went to school >> the next day. Guess what? I got the shots that day. >> >> OK I'm in the army and in those days you had to walk down an isle to get all >> of your shots. They used a machine that looked like a gun and I thought >> it wouldn't hurt. Guess what? It did! >> >> Then when I was 45 years old I got CML and went for a bone marrow >> transplant. So many, many needles that I just got used to them. Then having >> 17 BMB's. It looks like needles and me are just like twins, always together. >> Not to mention that one of the aspiration needles break off and lodge in my >> illiac. So in go more needles and an in-cession follows to remove that >> needle. Then four stitches, of course using another needle. >> >> So about 4 years ago my kidneys fail and I go on dialysis. Two very large >> needles are stuck into my arm every Monday, Wednesday and Friday, and they >> stay in there for four hours. >> >> I wouldn't say that I have gotten used to them but maybe I just don't pay >> that much attention to them anymore. >> >> So much for any phobias., but life goes on. Hopefully I will be getting >> some more needles for a kidney transplant soon. Now doesn't that sound >> warped from someone that had a phobia against needles? It just all depends >> on how one looks at it I guess... >> >> 18's, >> >> Marty >> >> >> >> On Wed, Jan 21, 2015 at 7:27 AM, 'Icand
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
May I add my sea story of needles, I don't like needles but do not have a phobia. When I arrived at boot camp the first thing was get our shots. We walked through a line getting shots in both arms as mentioned. They were using hugh syringes and had large pillows with the needles that was changed while we were stepping in front of them. Someone was calling a slow cadence of step, step. As each recruit stepped He was given a shot in each arm. All of a sudden the corpsman I was getting ready to step in front of yelled "BRING BACK MY NEEDLE." The recruit in fount of me had it hanging in his arm. When I received the 4 pricks for allergy testing I then had to sit in the dentist chair I promptly passed out. Richard H. On Thursday, January 22, 2015 at 6:50:17 AM UTC-6, greenie wrote: > Jeanie, Needles lord knows I hate them. The first time I had a blood > test it was to get married. My Doctor lived 3 blocks away form me and I > worked for him when I was in High School. They did the blood work and he > walked in after and took one look at me and he put is hand behind my head > and pushed it down and told me to pushed as hard as I could to keep me from > passing out. > > Then when I went into the Navy I was on active duty for a year and a haft > they found out that I didn't get any of my shots. Well you know what > happened then, I received them all at once, both arms. So years go by and > I end up with CML and we all know about needles. Yes, some are good and > some are bad. I had to get blood work this Monday and I think the lady > took the needle outside and scraped it on the pavement plus I think it was > square and bent. I think it when through my arm and out the other side. > > And the first BMB all they gave me it was so much fun that I asked them to > do another one. Ha, Ha. After about 10 or 11 of them I asked to be put > into lala land which they did but I had to have someone drive me home. My > wife has to give me a shot of testosterone every two weeks, the needle is > 1/1/2 in long another fun shot. So for me they do the molecular blood work > and no more BMB. Thank you. > > Take care and hang in their, > > greenie > > In a message dated 1/22/2015 6:08:12 A.M. Eastern Standard Time, > cml...@googlegroups.com writes: > > Hi Marty. > How are you? > I am going to have the endoscopy today. First I will go to the blood area > and have blood checked. Then to dr for consultation. Then to have the > endoscopy. > Long day. > Needles are no fun but we get used to them. Some draws are good some bad. > > Pray for me and all in need. > Love Jeanie > > Sent from my iPhone > > On Jan 21, 2015, at 7:52 AM, Marty Gartenberg > wrote: > > Hi Jeanie, > > You have been through so much it's about time that you got a break or two. > Not feeling that IV go in and no black and blue afterward then having a BMA > with little or no pain. > > Well, two out of two ain't too bad is it? <360.gif> > > When I was a kid I had a phobia, and it was needles. I hated them that on > the day my school was giving shots I told my mother that I was sick and > couldn't go to school that day. So, she kept me home and I went to school > the next day. Guess what? I got the shots that day. > > OK I'm in the army and in those days you had to walk down an isle to get > all of your shots. They used a machine that looked like a gun and I thought > it wouldn't hurt. Guess what? It did! > > Then when I was 45 years old I got CML and went for a bone marrow > transplant. So many, many needles that I just got used to them. Then having > 17 BMB's. It looks like needles and me are just like twins, always > together. Not to mention that one of the aspiration needles break off and > lodge in my illiac. So in go more needles and an in-cession follows to > remove that needle. Then four stitches, of course using another needle. > > > So about 4 years ago my kidneys fail and I go on dialysis. Two very large > needles are stuck into my arm every Monday, Wednesday and Friday, and they > stay in there for four hours. > > I wouldn't say that I have gotten used to them but maybe I just don't pay > that much attention to them anymore. > > So much for any phobias., but life goes on. Hopefully I will be getting > some more needles for a kidney transplant soon. Now doesn't that sound > warped from someone that had a phobia against needles? It just all depends > on how one looks at it I guess... > > 18's, > > Marty > > > > On Wed, Jan 21, 2015 at 7:27 AM, 'Icandoallttc' via CMLHope < > cml...@googlegroups.com > wrote: > > Hi Marty and thanks so much for that uplift. I have been dreading it > for some reason. > I pray that you get your kidney soon-- I know those fistula operations are > tedious. > The procedure I dread most is the IV. > My last one last week was a miracle. The nurse put it in and I didn't > feel a thing. Later I looked for the black and blue
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Jeanie, Needles lord knows I hate them. The first time I had a blood test it was to get married. My Doctor lived 3 blocks away form me and I wor ked for him when I was in High School. They did the blood work and he walked in after and took one look at me and he put is hand behind my head and pushed it down and told me to pushed as hard as I could to keep me from passing out. Then when I went into the Navy I was on active duty for a year and a haft they found out that I didn't get any of my shots. Well you know what happened then, I received them all at once, both arms. So years go by and I end up with CML and we all know about needles. Yes, some are good and some are bad. I had to get blood work this Monday and I think the lady took the needle outside and scraped it on the pavement plus I think it was square and bent. I think it when through my arm and out the other side. And the first BMB all they gave me it was so much fun that I asked them to do another one. Ha, Ha. After about 10 or 11 of them I asked to be put into lala land which they did but I had to have someone drive me home. My wife has to give me a shot of testosterone every two weeks, the needle is 1/1/2 in long another fun shot. So for me they do the molecular blood work and no more BMB. Thank you. Take care and hang in their, greenie In a message dated 1/22/2015 6:08:12 A.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Hi Marty. How are you? I am going to have the endoscopy today. First I will go to the blood area and have blood checked. Then to dr for consultation. Then to have the endoscopy. Long day. Needles are no fun but we get used to them. Some draws are good some bad. Pray for me and all in need. Love Jeanie Sent from my iPhone On Jan 21, 2015, at 7:52 AM, Marty Gartenberg <_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) > wrote: Hi Jeanie, You have been through so much it's about time that you got a break or two. Not feeling that IV go in and no black and blue afterward then having a BMA with little or no pain. Well, two out of two ain't too bad is it? <360.gif> When I was a kid I had a phobia, and it was needles. I hated them that on the day my school was giving shots I told my mother that I was sick and couldn't go to school that day. So, she kept me home and I went to school the next day. Guess what? I got the shots that day. OK I'm in the army and in those days you had to walk down an isle to get all of your shots. They used a machine that looked like a gun and I thought it wouldn't hurt. Guess what? It did! Then when I was 45 years old I got CML and went for a bone marrow transplant. So many, many needles that I just got used to them. Then having 17 BMB's. It looks like needles and me are just like twins, always together. Not to mention that one of the aspiration needles break off and lodge in my illiac. So in go more needles and an in-cession follows to remove that needle. Then four stitches, of course using another needle. So about 4 years ago my kidneys fail and I go on dialysis. Two very large needles are stuck into my arm every Monday, Wednesday and Friday, and they stay in there for four hours. I wouldn't say that I have gotten used to them but maybe I just don't pay that much attention to them anymore. So much for any phobias., but life goes on. Hopefully I will be getting some more needles for a kidney transplant soon. Now doesn't that sound warped from someone that had a phobia against needles? It just all depends on how one looks at it I guess... 18's, Marty On Wed, Jan 21, 2015 at 7:27 AM, 'Icandoallttc' via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Hi Marty and thanks so much for that uplift. I have been dreading it for some reason. I pray that you get your kidney soon-- I know those fistula operations are tedious. The procedure I dread most is the IV. My last one last week was a miracle. The nurse put it in and I didn't feel a thing. Later I looked for the black and blue mark left by the IV and no sign at all. I have never had this before. It's usually black and blue and swollen. My Bma has hurt very little. Thank The Lord!!! You are our spice of life and thanks for being there for. And thanks to all if you for your prayers and uplifts. Blessings 18's jeanie Sent from my iPhone On Jan 20, 2015, at 10:06 PM, Marty Gartenberg <_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) > wrote: Hi Jeanie, Good luck with your endoscopy. They usually do put you out for that procedure. I don't know if they will use a Propofol cocktail but if they do you will go to sleep and when you wake up you will still think that the procedure was not yet done. Very good sleep with no after effects. I have had at least a dozen of them. Every time they operate on the fistula in my arm they use it.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Jeanie, You know that I'm praying for you. I know that everything will come out alright. GOD bless you Jeanie. 18's, Marty PS could you also pray for me to receive a kidney transplant soon. I need to have another operation on the fistula in my arm once again. This will be the twelfth operation in less then a year, but I have to get it done because it is my life line until I can get a kidney transplant.. On Thu, Jan 22, 2015 at 6:08 AM, 'Icandoallttc' via CMLHope < cmlhope@googlegroups.com> wrote: > Hi Marty. > How are you? > I am going to have the endoscopy today. First I will go to the blood area > and have blood checked. Then to dr for consultation. Then to have the > endoscopy. > Long day. > Needles are no fun but we get used to them. Some draws are good some bad. > > Pray for me and all in need. > Love Jeanie > > Sent from my iPhone > > On Jan 21, 2015, at 7:52 AM, Marty Gartenberg wrote: > > Hi Jeanie, > > You have been through so much it's about time that you got a break or two. > Not feeling that IV go in and no black and blue afterward then having a BMA > with little or no pain. > > Well, two out of two ain't too bad is it? <360.gif> > > When I was a kid I had a phobia, and it was needles. I hated them that on > the day my school was giving shots I told my mother that I was sick and > couldn't go to school that day. So, she kept me home and I went to school > the next day. Guess what? I got the shots that day. > > OK I'm in the army and in those days you had to walk down an isle to get > all of your shots. They used a machine that looked like a gun and I thought > it wouldn't hurt. Guess what? It did! > > Then when I was 45 years old I got CML and went for a bone marrow > transplant. So many, many needles that I just got used to them. Then having > 17 BMB's. It looks like needles and me are just like twins, always > together. Not to mention that one of the aspiration needles break off and > lodge in my illiac. So in go more needles and an in-cession follows to > remove that needle. Then four stitches, of course using another needle. > > > So about 4 years ago my kidneys fail and I go on dialysis. Two very large > needles are stuck into my arm every Monday, Wednesday and Friday, and they > stay in there for four hours. > > I wouldn't say that I have gotten used to them but maybe I just don't pay > that much attention to them anymore. > > So much for any phobias., but life goes on. Hopefully I will be getting > some more needles for a kidney transplant soon. Now doesn't that sound > warped from someone that had a phobia against needles? It just all depends > on how one looks at it I guess... > > 18's, > > Marty > > > > On Wed, Jan 21, 2015 at 7:27 AM, 'Icandoallttc' via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Hi Marty and thanks so much for that uplift. I have been dreading it for >> some reason. >> I pray that you get your kidney soon-- I know those fistula operations >> are tedious. >> The procedure I dread most is the IV. >> My last one last week was a miracle. The nurse put it in and I didn't >> feel a thing. Later I looked for the black and blue mark left by the IV >> and no sign at all. I have never had this before. It's usually black and >> blue and swollen. >> My Bma has hurt very little. Thank The Lord!!! >> >> You are our spice of life and thanks for being there for. And thanks to >> all if you for your prayers and uplifts. >> Blessings >> 18's jeanie >> >> >> Sent from my iPhone >> >> On Jan 20, 2015, at 10:06 PM, Marty Gartenberg wrote: >> >> Hi Jeanie, >> >> Good luck with your endoscopy. They usually do put you out for that >> procedure. I don't know if they will use a Propofol cocktail but if they do >> you will go to sleep and when you wake up you will still think that the >> procedure was not yet done. Very good sleep with no after effects. I have >> had at least a dozen of them. Every time they operate on the fistula in my >> arm they use it. It looks like I will be going in for another procedure for >> my fistula, there is a narrowing in two sections. This will make 13 >> procedures in the last 12 months. I sure hope that a kidney transplant >> will be coming soon. >> >> I have to share a story about my anesthesia doctor. She knows me so well >> that we are on a first name basis. So, the last time that I had to be put >> out I asked her if I could "knock myself out" Of course I was only kidding >> but she told me that she would let me do it to myself. >> >> So, i'm in the operating room and she is standing over me and she puts >> the oxygen mask on my head and as she is holding the needle that is >> connected to me IV she tells me to put my thumb on the plunger but not to >> push it until she tells me so. >> >> Ok I got my thumb on the plunger and she tells me to push it very slowly >> when she counts to three. So, I'm waiting and her thumb is on top of mine >> and she counts "one" then she starts to count "two" and the next thing I >> know is that
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Marty. How are you? I am going to have the endoscopy today. First I will go to the blood area and have blood checked. Then to dr for consultation. Then to have the endoscopy. Long day. Needles are no fun but we get used to them. Some draws are good some bad. Pray for me and all in need. Love Jeanie Sent from my iPhone > On Jan 21, 2015, at 7:52 AM, Marty Gartenberg wrote: > > Hi Jeanie, > > You have been through so much it's about time that you got a break or two. > Not feeling that IV go in and no black and blue afterward then having a BMA > with little or no pain. > > Well, two out of two ain't too bad is it? <360.gif> > > When I was a kid I had a phobia, and it was needles. I hated them that on the > day my school was giving shots I told my mother that I was sick and couldn't > go to school that day. So, she kept me home and I went to school the next > day. Guess what? I got the shots that day. > > OK I'm in the army and in those days you had to walk down an isle to get all > of your shots. They used a machine that looked like a gun and I thought it > wouldn't hurt. Guess what? It did! > > Then when I was 45 years old I got CML and went for a bone marrow transplant. > So many, many needles that I just got used to them. Then having 17 BMB's. It > looks like needles and me are just like twins, always together. Not to > mention that one of the aspiration needles break off and lodge in my illiac. > So in go more needles and an in-cession follows to remove that needle. Then > four stitches, of course using another needle. > > So about 4 years ago my kidneys fail and I go on dialysis. Two very large > needles are stuck into my arm every Monday, Wednesday and Friday, and they > stay in there for four hours. > > I wouldn't say that I have gotten used to them but maybe I just don't pay > that much attention to them anymore. > > So much for any phobias., but life goes on. Hopefully I will be getting some > more needles for a kidney transplant soon. Now doesn't that sound warped from > someone that had a phobia against needles? It just all depends on how one > looks at it I guess... > > 18's, > > Marty > > > >> On Wed, Jan 21, 2015 at 7:27 AM, 'Icandoallttc' via CMLHope >> wrote: >> Hi Marty and thanks so much for that uplift. I have been dreading it for >> some reason. >> I pray that you get your kidney soon-- I know those fistula operations are >> tedious. >> The procedure I dread most is the IV. >> My last one last week was a miracle. The nurse put it in and I didn't feel >> a thing. Later I looked for the black and blue mark left by the IV and no >> sign at all. I have never had this before. It's usually black and blue and >> swollen. >> My Bma has hurt very little. Thank The Lord!!! >> >> You are our spice of life and thanks for being there for. And thanks to all >> if you for your prayers and uplifts. >> Blessings >> 18's jeanie >> >> >> Sent from my iPhone >> >>> On Jan 20, 2015, at 10:06 PM, Marty Gartenberg wrote: >>> >>> Hi Jeanie, >>> >>> Good luck with your endoscopy. They usually do put you out for that >>> procedure. I don't know if they will use a Propofol cocktail but if they do >>> you will go to sleep and when you wake up you will still think that the >>> procedure was not yet done. Very good sleep with no after effects. I have >>> had at least a dozen of them. Every time they operate on the fistula in my >>> arm they use it. It looks like I will be going in for another procedure for >>> my fistula, there is a narrowing in two sections. This will make 13 >>> procedures in the last 12 months. I sure hope that a kidney transplant >>> will be coming soon. >>> >>> I have to share a story about my anesthesia doctor. She knows me so well >>> that we are on a first name basis. So, the last time that I had to be put >>> out I asked her if I could "knock myself out" Of course I was only kidding >>> but she told me that she would let me do it to myself. >>> >>> So, i'm in the operating room and she is standing over me and she puts the >>> oxygen mask on my head and as she is holding the needle that is connected >>> to me IV she tells me to put my thumb on the plunger but not to push it >>> until she tells me so. >>> >>> Ok I got my thumb on the plunger and she tells me to push it very slowly >>> when she counts to three. So, I'm waiting and her thumb is on top of mine >>> and she counts "one" then she starts to count "two" and the next thing I >>> know is that I am waking up in the recovery room. >>> >>> When she came to see me I asked her if I was the one that knocked myself >>> out and she just smiled. >>> >>> By the way this Propofol is white in color and looks like milk. >>> >>> Humor is the spice of life.<360.gif> >>> >>> 18's, >>> >>> Marty >>> On Tue, Jan 20, 2015 at 3:19 PM, 'Icandoallttc' via CMLHope wrote: Hi Marty Yes a fl cracker--hope you are great today!
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Jeanie, You have been through so much it's about time that you got a break or two. Not feeling that IV go in and no black and blue afterward then having a BMA with little or no pain. Well, two out of two ain't too bad is it? [?] When I was a kid I had a phobia, and it was needles. I hated them that on the day my school was giving shots I told my mother that I was sick and couldn't go to school that day. So, she kept me home and I went to school the next day. Guess what? I got the shots that day. OK I'm in the army and in those days you had to walk down an isle to get all of your shots. They used a machine that looked like a gun and I thought it wouldn't hurt. Guess what? It did! Then when I was 45 years old I got CML and went for a bone marrow transplant. So many, many needles that I just got used to them. Then having 17 BMB's. It looks like needles and me are just like twins, always together. Not to mention that one of the aspiration needles break off and lodge in my illiac. So in go more needles and an in-cession follows to remove that needle. Then four stitches, of course using another needle. So about 4 years ago my kidneys fail and I go on dialysis. Two very large needles are stuck into my arm every Monday, Wednesday and Friday, and they stay in there for four hours. I wouldn't say that I have gotten used to them but maybe I just don't pay that much attention to them anymore. So much for any phobias., but life goes on. Hopefully I will be getting some more needles for a kidney transplant soon. Now doesn't that sound warped from someone that had a phobia against needles? It just all depends on how one looks at it I guess... 18's, Marty On Wed, Jan 21, 2015 at 7:27 AM, 'Icandoallttc' via CMLHope < cmlhope@googlegroups.com> wrote: > Hi Marty and thanks so much for that uplift. I have been dreading it for > some reason. > I pray that you get your kidney soon-- I know those fistula operations are > tedious. > The procedure I dread most is the IV. > My last one last week was a miracle. The nurse put it in and I didn't > feel a thing. Later I looked for the black and blue mark left by the IV > and no sign at all. I have never had this before. It's usually black and > blue and swollen. > My Bma has hurt very little. Thank The Lord!!! > > You are our spice of life and thanks for being there for. And thanks to > all if you for your prayers and uplifts. > Blessings > 18's jeanie[image: 🐬][image: 🐬] > > > Sent from my iPhone > > On Jan 20, 2015, at 10:06 PM, Marty Gartenberg wrote: > > Hi Jeanie, > > Good luck with your endoscopy. They usually do put you out for that > procedure. I don't know if they will use a Propofol cocktail but if they do > you will go to sleep and when you wake up you will still think that the > procedure was not yet done. Very good sleep with no after effects. I have > had at least a dozen of them. Every time they operate on the fistula in my > arm they use it. It looks like I will be going in for another procedure for > my fistula, there is a narrowing in two sections. This will make 13 > procedures in the last 12 months. I sure hope that a kidney transplant > will be coming soon. > > I have to share a story about my anesthesia doctor. She knows me so well > that we are on a first name basis. So, the last time that I had to be put > out I asked her if I could "knock myself out" Of course I was only kidding > but she told me that she would let me do it to myself. > > So, i'm in the operating room and she is standing over me and she puts the > oxygen mask on my head and as she is holding the needle that is connected > to me IV she tells me to put my thumb on the plunger but not to push it > until she tells me so. > > Ok I got my thumb on the plunger and she tells me to push it very slowly > when she counts to three. So, I'm waiting and her thumb is on top of mine > and she counts "one" then she starts to count "two" and the next thing I > know is that I am waking up in the recovery room. > > When she came to see me I asked her if I was the one that knocked myself > out and she just smiled. > > By the way this Propofol is white in color and looks like milk. > > Humor is the spice of life.<360.gif> > > 18's, > > Marty > > On Tue, Jan 20, 2015 at 3:19 PM, 'Icandoallttc' via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Hi Marty >> Yes a fl cracker--hope you are great today!!! >> I am going to have an endoscopy thur. >> First one--they put you to sleep. >> Blessings >> Jeanie >> >> Sent from my iPhone >> >> On Jan 19, 2015, at 7:55 PM, Marty Gartenberg wrote: >> >> Hi Jeanie, >> >> You sound like a real southern gal. As for me, I'm just a good old plain >> city boy that also loves to go fishing. When I was a kid my father would >> take me out deep sea fishing and my favorite fish was blue fish. My mother >> used to cook it in milk to get rid of the fishy taste. It was really good >> but I can't seem to find blue fish here in Florida. >> >> Anyway, I am kind of su
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Marty and thanks so much for that uplift. I have been dreading it for some reason. I pray that you get your kidney soon-- I know those fistula operations are tedious. The procedure I dread most is the IV. My last one last week was a miracle. The nurse put it in and I didn't feel a thing. Later I looked for the black and blue mark left by the IV and no sign at all. I have never had this before. It's usually black and blue and swollen. My Bma has hurt very little. Thank The Lord!!! You are our spice of life and thanks for being there for. And thanks to all if you for your prayers and uplifts. Blessings 18's jeanie🐬🐬 Sent from my iPhone > On Jan 20, 2015, at 10:06 PM, Marty Gartenberg wrote: > > Hi Jeanie, > > Good luck with your endoscopy. They usually do put you out for that > procedure. I don't know if they will use a Propofol cocktail but if they do > you will go to sleep and when you wake up you will still think that the > procedure was not yet done. Very good sleep with no after effects. I have had > at least a dozen of them. Every time they operate on the fistula in my arm > they use it. It looks like I will be going in for another procedure for my > fistula, there is a narrowing in two sections. This will make 13 procedures > in the last 12 months. I sure hope that a kidney transplant will be coming > soon. > > I have to share a story about my anesthesia doctor. She knows me so well that > we are on a first name basis. So, the last time that I had to be put out I > asked her if I could "knock myself out" Of course I was only kidding but she > told me that she would let me do it to myself. > > So, i'm in the operating room and she is standing over me and she puts the > oxygen mask on my head and as she is holding the needle that is connected to > me IV she tells me to put my thumb on the plunger but not to push it until > she tells me so. > > Ok I got my thumb on the plunger and she tells me to push it very slowly when > she counts to three. So, I'm waiting and her thumb is on top of mine and she > counts "one" then she starts to count "two" and the next thing I know is that > I am waking up in the recovery room. > > When she came to see me I asked her if I was the one that knocked myself out > and she just smiled. > > By the way this Propofol is white in color and looks like milk. > > Humor is the spice of life.<360.gif> > > 18's, > > Marty > >> On Tue, Jan 20, 2015 at 3:19 PM, 'Icandoallttc' via CMLHope >> wrote: >> Hi Marty >> Yes a fl cracker--hope you are great today!!! >> I am going to have an endoscopy thur. >> First one--they put you to sleep. >> Blessings >> Jeanie >> >> Sent from my iPhone >> >>> On Jan 19, 2015, at 7:55 PM, Marty Gartenberg wrote: >>> >>> Hi Jeanie, >>> >>> You sound like a real southern gal. As for me, I'm just a good old plain >>> city boy that also loves to go fishing. When I was a kid my father would >>> take me out deep sea fishing and my favorite fish was blue fish. My mother >>> used to cook it in milk to get rid of the fishy taste. It was really good >>> but I can't seem to find blue fish here in Florida. >>> >>> Anyway, I am kind of surprised to hear that your having a difficult time >>> with Hydrea. That was the first drug that I got along with Allopurinal when >>> I first had CML. >>> >>> Both of those drugs never gave me any problems except if I took too much >>> and it would take about a week for them to start working. Once they did >>> then my blood counts would drop sometimes drastically so the doses had to >>> be adjusted, but I never got sick or anything like that from them. >>> >>> Good luck, >>> >>> 18's, >>> >>> Marty >>> On Mon, Jan 19, 2015 at 8:59 AM, ICANDOALLTTC via CMLHope wrote: Hi all, My family all love to fish, and we keep and eat everything legalhehe. I was reared on good fried to a golden brown perch that live in the Fl lakes and rivers. There is nothing better than good fried mullet with their roe fried to t golden brown. We love it with grits and tomato gravy and cornbread. I am feeling some better, but taking Hydrea is no fun at all. Knocks you for a loop. I haven't heard about the pontatinib yet. My doctor says its a powerful drug and has to be kept monitored every week. Well all the drugs are powerful as far as I am concerned. Good luck everyone, Jeanie<3 In a message dated 1/15/2015 2:58:00 P.M. Eastern Standard Time, wa2...@gmail.com writes: Hi again Greenie, Like you said, don't look back but only forward. By the way, I am an animal lover whether it be dogs, cats, birds or fish. I am glad to hear that you threw back those fish where they belong. 18's, Marty > On Thu, Jan 15, 2015 at 2:17 PM, Myvety2k via CMLHope > wrote: > Marty, My aunt left me some stock and
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Jeanie, Good luck with your endoscopy. They usually do put you out for that procedure. I don't know if they will use a Propofol cocktail but if they do you will go to sleep and when you wake up you will still think that the procedure was not yet done. Very good sleep with no after effects. I have had at least a dozen of them. Every time they operate on the fistula in my arm they use it. It looks like I will be going in for another procedure for my fistula, there is a narrowing in two sections. This will make 13 procedures in the last 12 months. I sure hope that a kidney transplant will be coming soon. I have to share a story about my anesthesia doctor. She knows me so well that we are on a first name basis. So, the last time that I had to be put out I asked her if I could "knock myself out" Of course I was only kidding but she told me that she would let me do it to myself. So, i'm in the operating room and she is standing over me and she puts the oxygen mask on my head and as she is holding the needle that is connected to me IV she tells me to put my thumb on the plunger but not to push it until she tells me so. Ok I got my thumb on the plunger and she tells me to push it very slowly when she counts to three. So, I'm waiting and her thumb is on top of mine and she counts "one" then she starts to count "two" and the next thing I know is that I am waking up in the recovery room. When she came to see me I asked her if I was the one that knocked myself out and she just smiled. By the way this Propofol is white in color and looks like milk. Humor is the spice of life.[?] 18's, Marty On Tue, Jan 20, 2015 at 3:19 PM, 'Icandoallttc' via CMLHope < cmlhope@googlegroups.com> wrote: > Hi Marty > Yes a fl cracker--hope you are great today!!! > I am going to have an endoscopy thur. > First one--they put you to sleep. > Blessings > Jeanie > > Sent from my iPhone > > On Jan 19, 2015, at 7:55 PM, Marty Gartenberg wrote: > > Hi Jeanie, > > You sound like a real southern gal. As for me, I'm just a good old plain > city boy that also loves to go fishing. When I was a kid my father would > take me out deep sea fishing and my favorite fish was blue fish. My mother > used to cook it in milk to get rid of the fishy taste. It was really good > but I can't seem to find blue fish here in Florida. > > Anyway, I am kind of surprised to hear that your having a difficult time > with Hydrea. That was the first drug that I got along with Allopurinal when > I first had CML. > > Both of those drugs never gave me any problems except if I took too much > and it would take about a week for them to start working. Once they did > then my blood counts would drop sometimes drastically so the doses had to > be adjusted, but I never got sick or anything like that from them. > > Good luck, > > 18's, > > Marty > > On Mon, Jan 19, 2015 at 8:59 AM, ICANDOALLTTC via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Hi all, >> My family all love to fish, and we keep and eat everything legalhehe. >> I was reared on good fried to a golden brown perch that live in the Fl >> lakes and rivers. >> There is nothing better than good fried mullet with their roe fried to t >> golden brown. >> We love it with grits and tomato gravy and cornbread. >> I am feeling some better, but taking Hydrea is no fun at all. Knocks you >> for a loop. >> I haven't heard about the pontatinib yet. >> My doctor says its a powerful drug and has to be kept monitored every >> week. >> Well all the drugs are powerful as far as I am concerned. >> Good luck everyone, >> Jeanie<3 >> >> >> In a message dated 1/15/2015 2:58:00 P.M. Eastern Standard Time, >> wa2...@gmail.com writes: >> >> Hi again Greenie, >> >> Like you said, don't look back but only forward. >> >> By the way, I am an animal lover whether it be dogs, cats, birds or fish. >> >> I am glad to hear that you threw back those fish where they belong. >> >> 18's, >> >> Marty >> >> On Thu, Jan 15, 2015 at 2:17 PM, Myvety2k via CMLHope < >> cmlhope@googlegroups.com> wrote: >> >>> Marty, My aunt left me some stock and money and one of the stocks was >>> Novartis and my stock guy told me to sell it. That was before Gleevec was >>> in any kind of study. Because of him I also lost $43,000.00 and I pulled >>> my money out and fired him. If I, would have, could of. Of course I wish I >>> would have kept some of my early Corvette's that I had I would be worth a >>> more money then Novartis. But can't look back, just look forward. >>> >>> Thanks for your reply, also I live in South Fort Myers not far from the >>> beach. In fact I went fishing yesterday by the beach and caught 8 fish. >>> But I do not keep any, back into the water they go where they belong. >>> >>> greenie >>> >>> >>> >>> In a message dated 1/15/2015 1:09:00 P.M. Eastern Standard Time, >>> wa2...@gmail.com writes: >>> >>> Hi Greenie, >>> >>> First, where in Florida do you live? I am on the east coast, Boynton >>> Beach. If we are not to far maybe we can
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Marty Yes a fl cracker--hope you are great today!!! I am going to have an endoscopy thur. First one--they put you to sleep. Blessings Jeanie Sent from my iPhone > On Jan 19, 2015, at 7:55 PM, Marty Gartenberg wrote: > > Hi Jeanie, > > You sound like a real southern gal. As for me, I'm just a good old plain city > boy that also loves to go fishing. When I was a kid my father would take me > out deep sea fishing and my favorite fish was blue fish. My mother used to > cook it in milk to get rid of the fishy taste. It was really good but I can't > seem to find blue fish here in Florida. > > Anyway, I am kind of surprised to hear that your having a difficult time with > Hydrea. That was the first drug that I got along with Allopurinal when I > first had CML. > > Both of those drugs never gave me any problems except if I took too much and > it would take about a week for them to start working. Once they did then my > blood counts would drop sometimes drastically so the doses had to be > adjusted, but I never got sick or anything like that from them. > > Good luck, > > 18's, > > Marty > >> On Mon, Jan 19, 2015 at 8:59 AM, ICANDOALLTTC via CMLHope >> wrote: >> Hi all, >> My family all love to fish, and we keep and eat everything legalhehe. >> I was reared on good fried to a golden brown perch that live in the Fl lakes >> and rivers. >> There is nothing better than good fried mullet with their roe fried to t >> golden brown. >> We love it with grits and tomato gravy and cornbread. >> I am feeling some better, but taking Hydrea is no fun at all. Knocks you >> for a loop. >> I haven't heard about the pontatinib yet. >> My doctor says its a powerful drug and has to be kept monitored every week. >> Well all the drugs are powerful as far as I am concerned. >> Good luck everyone, >> Jeanie<3 >> >> >> In a message dated 1/15/2015 2:58:00 P.M. Eastern Standard Time, >> wa2...@gmail.com writes: >> Hi again Greenie, >> >> Like you said, don't look back but only forward. >> >> By the way, I am an animal lover whether it be dogs, cats, birds or fish. >> >> I am glad to hear that you threw back those fish where they belong. >> >> 18's, >> >> Marty >> >>> On Thu, Jan 15, 2015 at 2:17 PM, Myvety2k via CMLHope >>> wrote: >>> Marty, My aunt left me some stock and money and one of the stocks was >>> Novartis and my stock guy told me to sell it. That was before Gleevec >>> was in any kind of study. Because of him I also lost $43,000.00 and I >>> pulled my money out and fired him. If I, would have, could of. Of course I >>> wish I would have kept some of my early Corvette's that I had I would be >>> worth a more money then Novartis. But can't look back, just look forward. >>> >>> Thanks for your reply, also I live in South Fort Myers not far from the >>> beach. In fact I went fishing yesterday by the beach and caught 8 fish. >>> But I do not keep any, back into the water they go where they belong. >>> >>> greenie >>> >>> >>> >>> In a message dated 1/15/2015 1:09:00 P.M. Eastern Standard Time, >>> wa2...@gmail.com writes: >>> Hi Greenie, >>> >>> First, where in Florida do you live? I am on the east coast, Boynton Beach. >>> If we are not to far maybe we can do lunch one of these days. If my memory >>> serves me right I think that you may be in Ft Meyers??? If so then I guess >>> that lunch is out of the question... >>> >>> About STI571. Do you know how it came about? As everyone already knows Dr. >>> Brian Druker who was the one that had first discovered it. He tried finding >>> a drug company that would produce it and finally found Novartis which was >>> at the time an agricultural drug company. >>> >>> One of Dr. Drukers patients was Zavie Miller who was trying out STI571 and >>> it was working. Novartis didn't want to produce it in quantity because of >>> the start up costs. Both Zavie and I got in touch with one of the >>> principals of Novartis and told him that we may be able to bring a lot of >>> investors into the company. >>> >>> At the time there was another CML site and we got on and asked if people >>> would like to invest in the Novartis stock. At that time their stock price >>> was $1,200 a share but there were also what is called American registry >>> shares of Novartis that was selling for only $20.00 a share. >>> >>> Everyone started buying those shares and Novartis then started production >>> but only after it was approved by the FDA which normally takes about 10 >>> years. With pressure being put on the FDA STI571 was approved in about one >>> and a half years, and became Gleevec. >>> >>> I bought many shares of Gleevec at $20.00 a share and have nor will I ever >>> sell them because of my support for Novartis. As of my December stock >>> portfolio Novartis is listed at 92.6600. Novartis stock has continuously >>> gone up and up over the years. >>> >>> I am however disappointed in the price they are getting
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Jeanie, You sound like a real southern gal. As for me, I'm just a good old plain city boy that also loves to go fishing. When I was a kid my father would take me out deep sea fishing and my favorite fish was blue fish. My mother used to cook it in milk to get rid of the fishy taste. It was really good but I can't seem to find blue fish here in Florida. Anyway, I am kind of surprised to hear that your having a difficult time with Hydrea. That was the first drug that I got along with Allopurinal when I first had CML. Both of those drugs never gave me any problems except if I took too much and it would take about a week for them to start working. Once they did then my blood counts would drop sometimes drastically so the doses had to be adjusted, but I never got sick or anything like that from them. Good luck, 18's, Marty On Mon, Jan 19, 2015 at 8:59 AM, ICANDOALLTTC via CMLHope < cmlhope@googlegroups.com> wrote: > Hi all, > My family all love to fish, and we keep and eat everything legalhehe. > I was reared on good fried to a golden brown perch that live in the Fl > lakes and rivers. > There is nothing better than good fried mullet with their roe fried to t > golden brown. > We love it with grits and tomato gravy and cornbread. > I am feeling some better, but taking Hydrea is no fun at all. Knocks you > for a loop. > I haven't heard about the pontatinib yet. > My doctor says its a powerful drug and has to be kept monitored every week. > Well all the drugs are powerful as far as I am concerned. > Good luck everyone, > Jeanie<3 > > > In a message dated 1/15/2015 2:58:00 P.M. Eastern Standard Time, > wa2...@gmail.com writes: > > Hi again Greenie, > > Like you said, don't look back but only forward. > > By the way, I am an animal lover whether it be dogs, cats, birds or fish. > > I am glad to hear that you threw back those fish where they belong. > > 18's, > > Marty > > On Thu, Jan 15, 2015 at 2:17 PM, Myvety2k via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Marty, My aunt left me some stock and money and one of the stocks was >> Novartis and my stock guy told me to sell it. That was before Gleevec was >> in any kind of study. Because of him I also lost $43,000.00 and I pulled >> my money out and fired him. If I, would have, could of. Of course I wish I >> would have kept some of my early Corvette's that I had I would be worth a >> more money then Novartis. But can't look back, just look forward. >> >> Thanks for your reply, also I live in South Fort Myers not far from the >> beach. In fact I went fishing yesterday by the beach and caught 8 fish. >> But I do not keep any, back into the water they go where they belong. >> >> greenie >> >> >> >> In a message dated 1/15/2015 1:09:00 P.M. Eastern Standard Time, >> wa2...@gmail.com writes: >> >> Hi Greenie, >> >> First, where in Florida do you live? I am on the east coast, Boynton >> Beach. If we are not to far maybe we can do lunch one of these days. If my >> memory serves me right I think that you may be in Ft Meyers??? If so then I >> guess that lunch is out of the question... >> >> About STI571. Do you know how it came about? As everyone already knows >> Dr. Brian Druker who was the one that had first discovered it. He tried >> finding a drug company that would produce it and finally found Novartis >> which was at the time an agricultural drug company. >> >> One of Dr. Drukers patients was Zavie Miller who was trying out STI571 >> and it was working. Novartis didn't want to produce it in quantity because >> of the start up costs. Both Zavie and I got in touch with one of the >> principals of Novartis and told him that we may be able to bring a lot of >> investors into the company. >> >> At the time there was another CML site and we got on and asked if people >> would like to invest in the Novartis stock. At that time their stock price >> was $1,200 a share but there were also what is called American registry >> shares of Novartis that was selling for only $20.00 a share. >> >> Everyone started buying those shares and Novartis then started production >> but only after it was approved by the FDA which normally takes about 10 >> years. With pressure being put on the FDA STI571 was approved in about one >> and a half years, and became Gleevec. >> >> I bought many shares of Gleevec at $20.00 a share and have nor will I >> ever sell them because of my support for Novartis. As of my December stock >> portfolio Novartis is listed at 92.6600. Novartis stock has continuously >> gone up and up over the years. >> >> I am however disappointed in the price they are getting, most notably >> there are people with CML that can not afford it. Now Novartis does have >> some options for those that are having a difficult time but it still would >> be nice if Novartis would look back at what they were and what they are >> now, and maybe consider dropping their price for Gleevec. Wishful thinking? >> Maybe but maybe not, hopefully... >> >> But Greenie, as you
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi all, My family all love to fish, and we keep and eat everything legalhehe. I was reared on good fried to a golden brown perch that live in the Fl lakes and rivers. There is nothing better than good fried mullet with their roe fried to t golden brown. We love it with grits and tomato gravy and cornbread. I am feeling some better, but taking Hydrea is no fun at all. Knocks you for a loop. I haven't heard about the pontatinib yet. My doctor says its a powerful drug and has to be kept monitored every week. Well all the drugs are powerful as far as I am concerned. Good luck everyone, Jeanie<3 In a message dated 1/15/2015 2:58:00 P.M. Eastern Standard Time, wa2...@gmail.com writes: Hi again Greenie, Like you said, don't look back but only forward. By the way, I am an animal lover whether it be dogs, cats, birds or fish. I am glad to hear that you threw back those fish where they belong. 18's, Marty On Thu, Jan 15, 2015 at 2:17 PM, Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Marty, My aunt left me some stock and money and one of the stocks was Novartis and my stock guy told me to sell it. That was before Gleevec was in any kind of study. Because of him I also lost $43,000.00 and I pulled my money out and fired him. If I, would have, could of. Of course I wish I would have kept some of my early Corvette's that I had I would be worth a more money then Novartis. But can't look back, just look forward. Thanks for your reply, also I live in South Fort Myers not far from the beach. In fact I went fishing yesterday by the beach and caught 8 fish. But I do not keep any, back into the water they go where they belong. greenie In a message dated 1/15/2015 1:09:00 P.M. Eastern Standard Time, _wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) writes: Hi Greenie, First, where in Florida do you live? I am on the east coast, Boynton Beach. If we are not to far maybe we can do lunch one of these days. If my memory serves me right I think that you may be in Ft Meyers??? If so then I guess that lunch is out of the question... About STI571. Do you know how it came about? As everyone already knows Dr. Brian Druker who was the one that had first discovered it. He tried finding a drug company that would produce it and finally found Novartis which was at the time an agricultural drug company. One of Dr. Drukers patients was Zavie Miller who was trying out STI571 and it was working. Novartis didn't want to produce it in quantity because of the start up costs. Both Zavie and I got in touch with one of the principals of Novartis and told him that we may be able to bring a lot of investors into the company. At the time there was another CML site and we got on and asked if people would like to invest in the Novartis stock. At that time their stock price was $1,200 a share but there were also what is called American registry shares of Novartis that was selling for only $20.00 a share. Everyone started buying those shares and Novartis then started production but only after it was approved by the FDA which normally takes about 10 years. With pressure being put on the FDA STI571 was approved in about one and a half years, and became Gleevec. I bought many shares of Gleevec at $20.00 a share and have nor will I ever sell them because of my support for Novartis. As of my December stock portfolio Novartis is listed at 92.6600. Novartis stock has continuously gone up and up over the years. I am however disappointed in the price they are getting, most notably there are people with CML that can not afford it. Now Novartis does have some options for those that are having a difficult time but it still would be nice if Novartis would look back at what they were and what they are now, and maybe consider dropping their price for Gleevec. Wishful thinking? Maybe but maybe not, hopefully... But Greenie, as you mentioned it is all about greed and money. 18's, Marty On Thu, Jan 15, 2015 at 9:32 AM, Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Thank you Marty, Everything you wrote is so true about Gleevec and CML. It's unfortunate that greed and money has to be in the equations in the final outcome. After Interferon that almost killed me all that was left was Hydrea. So when Doctor Tallman called me and wanted be in his study for STI571 I had no idea what was going on. Within 3 months I was 85% clean and after 6 months I was clean. Yes their have been over the years some up's and down's put that's part of life. Like my late Aunt used to always say when she was in her 80's I just take one day at a time. I wound like to see a cure in my life time because the old hour glass is starting to run low on sand.. And the way these people drive here in Florida the end could come anytime I leave
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
I no they always have so excuse. greenie In a message dated 1/17/2015 12:39:03 A.M. Eastern Standard Time, rbhuffm...@gmail.com writes: Thanks for your service, Greenie. My active duty with the Navy from 7/58 to 6/61. I do not qualify for any thing except prescriptions. I served 5 months in The Pacific Atomic range. I arrived 6 months after the Big Mike test. Since more people have those areas I applied for the atomic warrior program. The DOD rejected me because I arrived after six months (by days) and too far from the blast area to have received radiation from the trade winds or from the tides coming from that area. Richard H. On Friday, January 16, 2015 at 6:34:56 AM UTC-6, greenie wrote: Good morning Marty, The VA, they are on my I don't want to talk about list. I received a letter last week to see if I'm eligibility for choice card benefits. So I call their number and Secretary Bob left me a message thanking me for my years of service. I was in the Navy for 6 years, from 1956 to 1962, 3 years of active duty and 3 years of active reserve. I gave the women my information and she told me that I I'm not eligibility for anything. All I want is to get hearing ads. She told me that I make to much money, What, to much money are you kidding me. She said I make $238.00 a month to much and I don't qualify. When you turn in you income taxes they check you income. I guess I should have gotten married and had kids after getting out of high school or went into college or moved into Canada. But no I went into the Navy then after getting out I went into college. Thank you Secretary Bob. greenie In a message dated 1/16/2015 7:09:14 A.M. Eastern Standard Time, _wa2...@gmail.com_ (javascript:) writes: Hi Richard, It seems that you are between a rock and a hard place with the VA. That is something that you must deal with but if there is ever a chance to get rid of them for your meds or care then I don't need to go further... I wish you the best of luck. 18's. Marty On Fri, Jan 16, 2015 at 12:32 AM, Richard H <_rbhuf...@gmail.com_ (javascript:) > wrote: Thanks for your service. The only reason I use the VA is to get my medicine. Seeing I am a cancer patient I am forced to see an Oncologist get them to sing the prescription. Without the VA I could not afford the Health Insurance copay until I could get assistance from the Drug company. He was the last one before I took 6 1/2 year vacation. Went I came back he decided he was going to be my primary ONC We had a discussion about who my Primary ONC was too be. At that point he went rogue (like a raging elephant.) I had to take a blood test (CBC+DIF) today so they could check the progress of the CML. That is not going to help at all. My CBC+DIF has not shown any change since the CMLstarted its Upward trend. As of today it was decided that I start 300mg of Gleevec. I contact my preferred ONC as soon I see any weight gain. Fortunately my Primary ONC is also building his own file to assist me clear this hurdle.. I have several friends and family that have to go as they are disabled Vets. Most are being treated for Agent Orange and/or PSD. As Always. 18's and My your tomorrow be all sunshine & roses. Richard H. On Thursday, January 15, 2015 at 4:13:53 AM UTC-6, wa2yyx wrote: Richard, I am a vet and I would never go to the VA for treatment even for a hang nail, because I have had previous dealings with them. They were recently in the news for everything that they were not doing for most of us vets. When someone has CML or any other major disease then most of the doctors at the VA are not skilled or even trained in this field. I am glad to see that you also have a true oncologist that is taking care of you. And, thank you for serving. 18's, Marty On Thu, Jan 15, 2015 at 12:32 AM, Richard Hwrote: I am my own advocate, I do have two ONCs. One is at a new regional cancer center and i am completing 12 years of treatment with. The other is with the VA. They are assigning me underqualified Drs. that should not be trying to treat me, but only approving the medication prescribed by the specialist. The VA Doctor has no actual experience in Blood Cancers. I will start the procedures tomorrow to resolve this. Richard H. On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: Hi Richard and Jeanie I would think that they would want you to be informed. I hope your issues resolve soon Best wishes Shannon On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com wrote: Hi Richard and thanks for the update. My onc doesn't like for me to be informed either; he just ignores what I say and goes on to tell me what he thinks. My uric acid was high along with my WBC and Platelets. He seemed to be more concerned with the high uric acid--even cal
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Thanks Marty your always such a great help to me and everyone in our group. greenie In a message dated 1/16/2015 10:47:55 P.M. Eastern Standard Time, wa2...@gmail.com writes: Greenie, I once had a problem with them and was refused some services that I required so I started a dispute and even if it took several months I prevailed. Some of the people working there think they have the only say in it and at times they are wrong. Now you know why I don't want to deal with the VA anymore. If you read what was going on there recently then you will see exactly what I mean. A lot of people were fired for not doing their jobs. These people working there probably never saw any action in any war yet they think that they have the power over you. Please let me know if anything happens after you complain. Good luck! 18's, Marty On Fri, Jan 16, 2015 at 10:06 PM, Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Marty, I was planning to do just that. Thanks. greenie In a message dated 1/16/2015 7:22:42 P.M. Eastern Standard Time, _wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) writes: Greenie, if I were you I would appeal this decision. You have absolutely nothing to loose. Now you know why I want nothing to do with the VA. 18's, Marty On Fri, Jan 16, 2015 at 7:34 AM, Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Good morning Marty, The VA, they are on my I don't want to talk about list. I received a letter last week to see if I'm eligibility for choice card benefits. So I call their number and Secretary Bob left me a message thanking me for my years of service. I was in the Navy for 6 years, from 1956 to 1962, 3 years of active duty and 3 years of active reserve. I gave the women my information and she told me that I I'm not eligibility for anything. All I want is to get hearing ads. She told me that I make to much money, What, to much money are you kidding me. She said I make $238.00 a month to much and I don't qualify. When you turn in you income taxes they check you income. I guess I should have gotten married and had kids after getting out of high school or went into college or moved into Canada. But no I went into the Navy then after getting out I went into college. Thank you Secretary Bob. greenie In a message dated 1/16/2015 7:09:14 A.M. Eastern Standard Time, _wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) writes: Hi Richard, It seems that you are between a rock and a hard place with the VA. That is something that you must deal with but if there is ever a chance to get rid of them for your meds or care then I don't need to go further... I wish you the best of luck. 18's. Marty On Fri, Jan 16, 2015 at 12:32 AM, Richard H <_rbhuffman1@gmail.com_ (mailto:rbhuffm...@gmail.com) > wrote: Thanks for your service. The only reason I use the VA is to get my medicine. Seeing I am a cancer patient I am forced to see an Oncologist get them to sing the prescription. Without the VA I could not afford the Health Insurance copay until I could get assistance from the Drug company. He was the last one before I took 6 1/2 year vacation. Went I came back he decided he was going to be my primary ONC We had a discussion about who my Primary ONC was too be. At that point he went rogue (like a raging elephant.) I had to take a blood test (CBC+DIF) today so they could check the progress of the CML. That is not going to help at all. My CBC+DIF has not shown any change since the CMLstarted its Upward trend. As of today it was decided that I start 300mg of Gleevec. I contact my preferred ONC as soon I see any weight gain. Fortunately my Primary ONC is also building his own file to assist me clear this hurdle.. I have several friends and family that have to go as they are disabled Vets. Most are being treated for Agent Orange and/or PSD. As Always. 18's and My your tomorrow be all sunshine & roses. Richard H. On Thursday, January 15, 2015 at 4:13:53 AM UTC-6, wa2yyx wrote: Richard, I am a vet and I would never go to the VA for treatment even for a hang nail, because I have had previous dealings with them. They were recently in the news for everything that they were not doing for most of us vets. When someone has CML or any other major disease then most of the doctors at the VA are not skilled or even trained in this field. I am glad to see that you also have a true oncologist that is taking care of you. And, thank you for serving. 18's, Marty On Thu, Jan 15, 2015 at 12:32 AM, Richard H wrote: I am my own advocate, I do have two ONCs. One is at a new regional cancer center and i am completing 12 years of treatment with. The other is with the VA. They are assigning me underqualified Drs. that should not be trying to treat me,
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Thanks for your service, Greenie. My active duty with the Navy from 7/58 to 6/61. I do not qualify for any thing except prescriptions. I served 5 months in The Pacific Atomic range. I arrived 6 months after the Big Mike test. Since more people have those areas I applied for the atomic warrior program. The DOD rejected me because I arrived after six months (by days) and too far from the blast area to have received radiation from the trade winds or from the tides coming from that area. Richard H. On Friday, January 16, 2015 at 6:34:56 AM UTC-6, greenie wrote: > Good morning Marty, The VA, they are on my I don't want to talk about > list. > I received a letter last week to see if I'm eligibility for choice card > benefits. So I call their number and Secretary Bob left me a message > thanking me for my years of service. I was in the Navy for 6 years, from > 1956 to 1962, 3 years of active duty and 3 years of active reserve. > > I gave the women my information and she told me that I I'm not eligibility > for anything. All I want is to get hearing ads. She told me that I make > to much money, What, to much money are you kidding me. She said I make > $238.00 a month to much and I don't qualify. When you turn in you income > taxes they check you income. I guess I should have gotten married and had > kids after getting out of high school or went into college or moved into > Canada. But no I went into the Navy then after getting out I went into > college. > > Thank you Secretary Bob. > > greenie > > In a message dated 1/16/2015 7:09:14 A.M. Eastern Standard Time, > wa2...@gmail.com writes: > > Hi Richard, > > It seems that you are between a rock and a hard place with the VA. That is > something that you must deal with but if there is ever a chance to get rid > of them for your meds or care then I don't need to go further... > > I wish you the best of luck. > > 18's. > > Marty > > On Fri, Jan 16, 2015 at 12:32 AM, Richard H > wrote: > >> Thanks for your service. The only reason I use the VA is to get my >> medicine. Seeing I am a cancer patient I am forced to see an Oncologist >> get them to sing the prescription. Without the VA I could not afford the >> Health Insurance copay until I could get assistance from the Drug >> company. He was the last one before I took 6 1/2 year vacation. Went I >> came back he decided he was going to be my primary ONC We had a discussion >> about who my Primary ONC was too be. At that point he went rogue (like a >> raging elephant.) I had to take a blood test (CBC+DIF) today so they could >> check the progress of the CML. That is not going to help at all. My >> CBC+DIF has not shown any change since the CMLstarted its Upward trend. As >> of today it was decided that I start 300mg of Gleevec. I contact my >> preferred ONC as soon I see any weight gain. Fortunately my Primary ONC is >> also building his own file to assist me clear this hurdle.. >> >> I have several friends and family that have to go as they are disabled >> Vets. Most are being treated for Agent Orange and/or PSD. >> >> As Always. 18's and My your tomorrow be all sunshine & roses. >> >> Richard H. >> >> On Thursday, January 15, 2015 at 4:13:53 AM UTC-6, wa2yyx wrote: >> >>> Richard, I am a vet and I would never go to the VA for treatment even >>> for a hang nail, because I have had previous dealings with them. They were >>> recently in the news for everything that they were not doing for most of us >>> vets. >>> >>> When someone has CML or any other major disease then most of the doctors >>> at the VA are not skilled or even trained in this field. I am glad to see >>> that you also have a true oncologist that is taking care of you. >>> >>> And, thank you for serving. >>> >>> 18's, >>> >>> Marty >>> >>> >>> >>> On Thu, Jan 15, 2015 at 12:32 AM, Richard H wrote: >>> I am my own advocate, I do have two ONCs. One is at a new regional cancer center and i am completing 12 years of treatment with. The other is with the VA. They are assigning me underqualified Drs. that should not be trying to treat me, but only approving the medication prescribed by the specialist. The VA Doctor has no actual experience in Blood Cancers. I will start the procedures tomorrow to resolve this. Richard H. On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: > > Hi Richard and Jeanie > > I would think that they would want you to be informed. I hope your > issues resolve soon > Best wishes Shannon > > On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com > wrote: >> >> Hi Richard and thanks for the update. My onc doesn't like for me >> to be informed either; he just ignores what I say and goes on to tell me >> what he thinks. >> My uric acid was high along with my WBC and Platelets. He seemed to >
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
I do have that specialist as my Primary ONC. I have been with him since Feb 2002. In 2001 he had 3parientsd. He has not missed a national conference in those years. He has been with 3 different offices as he progressed, This last one actually made him an ONC with the Kansas University Medical Cancer Center. This is the newest regional center in the US. My Problem is where I get my medicine and until I needed to get new meds he and the pharmacist decided they were not going to follow the recommendation of an outside dr. Thanks for your concern, Grammie. I've always loved a good debate, and I have a get team in place and we are building a case as his recommendations are off base so his ship is starting to leak. Richard H. On Friday, January 16, 2015 at 10:28:44 PM UTC-6, grammie wrote: > Richard, > I don't know where you live, but I really wish you could find a CML > specialist to help you determine which medication is best for you. > Regular ONCs just are not that familiar with the TKIs. Also, there is an > organization that will pay for your TKI and you do not have to jump through > a lot of hoops. If you want that information, please email me personally. > Joyce in IL > > > > On Jan 15, 2015, at 11:32 PM, Richard H wrote: > > Thanks for your service. The only reason I use the VA is to get my > medicine. Seeing I am a cancer patient I am forced to see an Oncologist > get them to sing the prescription. Without the VA I could not afford the > Health Insurance copay until I could get assistance from the Drug > company. He was the last one before I took 6 1/2 year vacation. Went I > came back he decided he was going to be my primary ONC We had a discussion > about who my Primary ONC was too be. At that point he went rogue (like a > raging elephant.) I had to take a blood test (CBC+DIF) today so they could > check the progress of the CML. That is not going to help at all. My > CBC+DIF has not shown any change since the CMLstarted its Upward trend. As > of today it was decided that I start 300mg of Gleevec. I contact my > preferred ONC as soon I see any weight gain. Fortunately my Primary ONC is > also building his own file to assist me clear this hurdle.. > > I have several friends and family that have to go as they are disabled > Vets. Most are being treated for Agent Orange and/or PSD. > > As Always. 18's and My your tomorrow be all sunshine & roses. > > Richard H. > > On Thursday, January 15, 2015 at 4:13:53 AM UTC-6, wa2yyx wrote: > >> Richard, I am a vet and I would never go to the VA for treatment even for >> a hang nail, because I have had previous dealings with them. They were >> recently in the news for everything that they were not doing for most of us >> vets. >> >> When someone has CML or any other major disease then most of the doctors >> at the VA are not skilled or even trained in this field. I am glad to see >> that you also have a true oncologist that is taking care of you. >> >> And, thank you for serving. >> >> 18's, >> >> Marty >> >> >> >> On Thu, Jan 15, 2015 at 12:32 AM, Richard H wrote: >> >>> I am my own advocate, I do have two ONCs. One is at a new regional >>> cancer center and i am completing 12 years of treatment with. The other is >>> with the VA. They are assigning me underqualified Drs. that should not be >>> trying to treat me, but only approving the medication prescribed by the >>> specialist. The VA Doctor has no actual experience in Blood Cancers. I >>> will start the procedures tomorrow to resolve this. >>> >>> Richard H. >>> >>> On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: Hi Richard and Jeanie I would think that they would want you to be informed. I hope your issues resolve soon Best wishes Shannon On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com wrote: > > Hi Richard and thanks for the update. My onc doesn't like for me to > be informed either; he just ignores what I say and goes on to tell me > what > he thinks. > My uric acid was high along with my WBC and Platelets. He seemed to > be more concerned with the high uric acid--even called me on my cell > personally twice; never had that happen before. > He took me off Sprycel adn put me on Hydrea and allopurinol; it's > funny the same thing they did 11 years ago when I was first dx. > He took another blood sample to see if I have a mutation against the > Sprycel. It seems strange that I had a mutation with Gleevec after 5 > years. Is five years a cut off point? Has anyone else have this happen? > Anyone else been on Hydrea after tki? > Going next week to Moffitt to see if I have the mutation. Will let > everyone know. > The leukemia has reared it's ugly head once again!! > Pray for me and everyone in need. > Blessings > Jeanie > (18) > >
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Thanks Marty.. Yes I I am. Quoting the man we celebrate on Monday. "We shall overcome!". Richard H. On Friday, January 16, 2015 at 6:09:11 AM UTC-6, wa2yyx wrote: > Hi Richard, > > It seems that you are between a rock and a hard place with the VA. That is > something that you must deal with but if there is ever a chance to get rid > of them for your meds or care then I don't need to go further... > > I wish you the best of luck. > > 18's. > > Marty > > On Fri, Jan 16, 2015 at 12:32 AM, Richard H > wrote: > >> Thanks for your service. The only reason I use the VA is to get my >> medicine. Seeing I am a cancer patient I am forced to see an Oncologist >> get them to sing the prescription. Without the VA I could not afford the >> Health Insurance copay until I could get assistance from the Drug >> company. He was the last one before I took 6 1/2 year vacation. Went I >> came back he decided he was going to be my primary ONC We had a discussion >> about who my Primary ONC was too be. At that point he went rogue (like a >> raging elephant.) I had to take a blood test (CBC+DIF) today so they could >> check the progress of the CML. That is not going to help at all. My >> CBC+DIF has not shown any change since the CMLstarted its Upward trend. As >> of today it was decided that I start 300mg of Gleevec. I contact my >> preferred ONC as soon I see any weight gain. Fortunately my Primary ONC is >> also building his own file to assist me clear this hurdle.. >> >> I have several friends and family that have to go as they are disabled >> Vets. Most are being treated for Agent Orange and/or PSD. >> >> As Always. 18's and My your tomorrow be all sunshine & roses. >> >> Richard H. >> >> On Thursday, January 15, 2015 at 4:13:53 AM UTC-6, wa2yyx wrote: >> >>> Richard, I am a vet and I would never go to the VA for treatment even >>> for a hang nail, because I have had previous dealings with them. They were >>> recently in the news for everything that they were not doing for most of us >>> vets. >>> >>> When someone has CML or any other major disease then most of the doctors >>> at the VA are not skilled or even trained in this field. I am glad to see >>> that you also have a true oncologist that is taking care of you. >>> >>> And, thank you for serving. >>> >>> 18's, >>> >>> Marty >>> >>> >>> >>> On Thu, Jan 15, 2015 at 12:32 AM, Richard H wrote: >>> I am my own advocate, I do have two ONCs. One is at a new regional cancer center and i am completing 12 years of treatment with. The other is with the VA. They are assigning me underqualified Drs. that should not be trying to treat me, but only approving the medication prescribed by the specialist. The VA Doctor has no actual experience in Blood Cancers. I will start the procedures tomorrow to resolve this. Richard H. On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: > > Hi Richard and Jeanie > > I would think that they would want you to be informed. I hope your > issues resolve soon > Best wishes Shannon > > On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com > wrote: >> >> Hi Richard and thanks for the update. My onc doesn't like for me >> to be informed either; he just ignores what I say and goes on to tell me >> what he thinks. >> My uric acid was high along with my WBC and Platelets. He seemed to >> be more concerned with the high uric acid--even called me on my cell >> personally twice; never had that happen before. >> He took me off Sprycel adn put me on Hydrea and allopurinol; it's >> funny the same thing they did 11 years ago when I was first dx. >> He took another blood sample to see if I have a mutation against the >> Sprycel. It seems strange that I had a mutation with Gleevec after 5 >> years. Is five years a cut off point? Has anyone else have this happen? >> >> Anyone else been on Hydrea after tki? >> Going next week to Moffitt to see if I have the mutation. Will let >> everyone know. >> The leukemia has reared it's ugly head once again!! >> Pray for me and everyone in need. >> Blessings >> Jeanie >> (18) >> >> >> In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, >> rbhuf...@gmail.com writes: >> >> WOW! Just read todays posts. I am praying for the group. I will >> add my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 >> pounds water weight in 20 days after restarting Gleevec. His nurse >> called >> that he was out of the country on vacation with his family. She checked >> with the DR. covering for him and he asked me to stop Gleevec as he >> thought >> I was gaining weight too fast also. My ONC did return to the office on >> Monday but finally had a conference with his Associ
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Richard, I don't know where you live, but I really wish you could find a CML specialist to help you determine which medication is best for you.Regular ONCs just are not that familiar with the TKIs. Also, there is an organization that will pay for your TKI and you do not have to jump through a lot of hoops. If you want that information, please email me personally. Joyce in IL On Jan 15, 2015, at 11:32 PM, Richard H wrote: > Thanks for your service. The only reason I use the VA is to get my medicine. > Seeing I am a cancer patient I am forced to see an Oncologist get them to > sing the prescription. Without the VA I could not afford the Health Insurance > copay until I could get assistance from the Drug company. He was the last > one before I took 6 1/2 year vacation. Went I came back he decided he was > going to be my primary ONC We had a discussion about who my Primary ONC was > too be. At that point he went rogue (like a raging elephant.) I had to take > a blood test (CBC+DIF) today so they could check the progress of the CML. > That is not going to help at all. My CBC+DIF has not shown any change since > the CMLstarted its Upward trend. As of today it was decided that I start > 300mg of Gleevec. I contact my preferred ONC as soon I see any weight gain. > Fortunately my Primary ONC is also building his own file to assist me clear > this hurdle.. > > I have several friends and family that have to go as they are disabled Vets. > Most are being treated for Agent Orange and/or PSD. > > As Always. 18's and My your tomorrow be all sunshine & roses. > > Richard H. > > On Thursday, January 15, 2015 at 4:13:53 AM UTC-6, wa2yyx wrote: > Richard, I am a vet and I would never go to the VA for treatment even for a > hang nail, because I have had previous dealings with them. They were recently > in the news for everything that they were not doing for most of us vets. > > When someone has CML or any other major disease then most of the doctors at > the VA are not skilled or even trained in this field. I am glad to see that > you also have a true oncologist that is taking care of you. > > And, thank you for serving. > > 18's, > > Marty > > > > On Thu, Jan 15, 2015 at 12:32 AM, Richard H wrote: > I am my own advocate, I do have two ONCs. One is at a new regional cancer > center and i am completing 12 years of treatment with. The other is with the > VA. They are assigning me underqualified Drs. that should not be trying to > treat me, but only approving the medication prescribed by the specialist. > The VA Doctor has no actual experience in Blood Cancers. I will start the > procedures tomorrow to resolve this. > > Richard H. > > On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: > Hi Richard and Jeanie > > I would think that they would want you to be informed. I hope your issues > resolve soon > Best wishes Shannon > > On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com wrote: > Hi Richard and thanks for the update. My onc doesn't like for me to be > informed either; he just ignores what I say and goes on to tell me what he > thinks. > My uric acid was high along with my WBC and Platelets. He seemed to be more > concerned with the high uric acid--even called me on my cell personally > twice; never had that happen before. > He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the > same thing they did 11 years ago when I was first dx. > He took another blood sample to see if I have a mutation against the Sprycel. > It seems strange that I had a mutation with Gleevec after 5 years. Is five > years a cut off point? Has anyone else have this happen? Anyone else been on > Hydrea after tki? > Going next week to Moffitt to see if I have the mutation. Will let everyone > know. > The leukemia has reared it's ugly head once again!! > Pray for me and everyone in need. > Blessings > Jeanie > (18) > > > In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, > rbhuf...@gmail.com writes: > WOW! Just read todays posts. I am praying for the group. I will add my > problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds water > weight in 20 days after restarting Gleevec. His nurse called that he was out > of the country on vacation with his family. She checked with the DR. > covering for him and he asked me to stop Gleevec as he thought I was gaining > weight too fast also. My ONC did return to the office on Monday but finally > had a conference with his Associate and he agreed with that decision. They > both thought that I should be on a different treatment. My ONC was to draft > an e-mail to the VA ONC (the one controlling my prescriptions) about my > reaction to Gleevec and to recommend the treatment he thinks I should be on. > So I am still in a wait and see stage. My ONC tells me I am too informed > about my condition and that challen
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Greenie, I once had a problem with them and was refused some services that I required so I started a dispute and even if it took several months I prevailed. Some of the people working there think they have the only say in it and at times they are wrong. Now you know why I don't want to deal with the VA anymore. If you read what was going on there recently then you will see exactly what I mean. A lot of people were fired for not doing their jobs. These people working there probably never saw any action in any war yet they think that they have the power over you. Please let me know if anything happens after you complain. Good luck! 18's, Marty On Fri, Jan 16, 2015 at 10:06 PM, Myvety2k via CMLHope < cmlhope@googlegroups.com> wrote: > Marty, I was planning to do just that. Thanks. > > greenie > > In a message dated 1/16/2015 7:22:42 P.M. Eastern Standard Time, > wa2...@gmail.com writes: > > Greenie, if I were you I would appeal this decision. You have absolutely > nothing to loose. > Now you know why I want nothing to do with the VA. > > 18's, > > Marty > > On Fri, Jan 16, 2015 at 7:34 AM, Myvety2k via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Good morning Marty, The VA, they are on my I don't want to talk about >> list. >> I received a letter last week to see if I'm eligibility for choice card >> benefits. So I call their number and Secretary Bob left me a message >> thanking me for my years of service. I was in the Navy for 6 years, from >> 1956 to 1962, 3 years of active duty and 3 years of active reserve. >> >> I gave the women my information and she told me that I I'm not >> eligibility for anything. All I want is to get hearing ads. She told me >> that I make to much money, What, to much money are you kidding me. She >> said I make $238.00 a month to much and I don't qualify. When you turn in >> you income taxes they check you income. I guess I should have gotten >> married and had kids after getting out of high school or went into college >> or moved into Canada. But no I went into the Navy then after getting out I >> went into college. >> >> Thank you Secretary Bob. >> >> greenie >> >> In a message dated 1/16/2015 7:09:14 A.M. Eastern Standard Time, >> wa2...@gmail.com writes: >> >> Hi Richard, >> >> It seems that you are between a rock and a hard place with the VA. That >> is something that you must deal with but if there is ever a chance to get >> rid of them for your meds or care then I don't need to go further... >> >> I wish you the best of luck. >> >> 18's. >> >> Marty >> >> On Fri, Jan 16, 2015 at 12:32 AM, Richard H wrote: >> >>> Thanks for your service. The only reason I use the VA is to get my >>> medicine. Seeing I am a cancer patient I am forced to see an Oncologist >>> get them to sing the prescription. Without the VA I could not afford the >>> Health Insurance copay until I could get assistance from the Drug >>> company. He was the last one before I took 6 1/2 year vacation. Went I >>> came back he decided he was going to be my primary ONC We had a discussion >>> about who my Primary ONC was too be. At that point he went rogue (like a >>> raging elephant.) I had to take a blood test (CBC+DIF) today so they could >>> check the progress of the CML. That is not going to help at all. My >>> CBC+DIF has not shown any change since the CMLstarted its Upward trend. As >>> of today it was decided that I start 300mg of Gleevec. I contact my >>> preferred ONC as soon I see any weight gain. Fortunately my Primary ONC is >>> also building his own file to assist me clear this hurdle.. >>> >>> I have several friends and family that have to go as they are disabled >>> Vets. Most are being treated for Agent Orange and/or PSD. >>> >>> As Always. 18's and My your tomorrow be all sunshine & roses. >>> >>> Richard H. >>> >>> On Thursday, January 15, 2015 at 4:13:53 AM UTC-6, wa2yyx wrote: >>> Richard, I am a vet and I would never go to the VA for treatment even for a hang nail, because I have had previous dealings with them. They were recently in the news for everything that they were not doing for most of us vets. When someone has CML or any other major disease then most of the doctors at the VA are not skilled or even trained in this field. I am glad to see that you also have a true oncologist that is taking care of you. And, thank you for serving. 18's, Marty On Thu, Jan 15, 2015 at 12:32 AM, Richard H wrote: > I am my own advocate, I do have two ONCs. One is at a new regional > cancer center and i am completing 12 years of treatment with. The other > is > with the VA. They are assigning me underqualified Drs. that should not be > trying to treat me, but only approving the medication prescribed by the > specialist. The VA Doctor has no actual experience in Blood Cancers. I > will start the procedures tomorrow to resolve this.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Marty, I was planning to do just that. Thanks. greenie In a message dated 1/16/2015 7:22:42 P.M. Eastern Standard Time, wa2...@gmail.com writes: Greenie, if I were you I would appeal this decision. You have absolutely nothing to loose. Now you know why I want nothing to do with the VA. 18's, Marty On Fri, Jan 16, 2015 at 7:34 AM, Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Good morning Marty, The VA, they are on my I don't want to talk about list. I received a letter last week to see if I'm eligibility for choice card benefits. So I call their number and Secretary Bob left me a message thanking me for my years of service. I was in the Navy for 6 years, from 1956 to 1962, 3 years of active duty and 3 years of active reserve. I gave the women my information and she told me that I I'm not eligibility for anything. All I want is to get hearing ads. She told me that I make to much money, What, to much money are you kidding me. She said I make $238.00 a month to much and I don't qualify. When you turn in you income taxes they check you income. I guess I should have gotten married and had kids after getting out of high school or went into college or moved into Canada. But no I went into the Navy then after getting out I went into college. Thank you Secretary Bob. greenie In a message dated 1/16/2015 7:09:14 A.M. Eastern Standard Time, _wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) writes: Hi Richard, It seems that you are between a rock and a hard place with the VA. That is something that you must deal with but if there is ever a chance to get rid of them for your meds or care then I don't need to go further... I wish you the best of luck. 18's. Marty On Fri, Jan 16, 2015 at 12:32 AM, Richard H <_rbhuffman1@gmail.com_ (mailto:rbhuffm...@gmail.com) > wrote: Thanks for your service. The only reason I use the VA is to get my medicine. Seeing I am a cancer patient I am forced to see an Oncologist get them to sing the prescription. Without the VA I could not afford the Health Insurance copay until I could get assistance from the Drug company. He was the last one before I took 6 1/2 year vacation. Went I came back he decided he was going to be my primary ONC We had a discussion about who my Primary ONC was too be. At that point he went rogue (like a raging elephant.) I had to take a blood test (CBC+DIF) today so they could check the progress of the CML. That is not going to help at all. My CBC+DIF has not shown any change since the CMLstarted its Upward trend. As of today it was decided that I start 300mg of Gleevec. I contact my preferred ONC as soon I see any weight gain. Fortunately my Primary ONC is also building his own file to assist me clear this hurdle.. I have several friends and family that have to go as they are disabled Vets. Most are being treated for Agent Orange and/or PSD. As Always. 18's and My your tomorrow be all sunshine & roses. Richard H. On Thursday, January 15, 2015 at 4:13:53 AM UTC-6, wa2yyx wrote: Richard, I am a vet and I would never go to the VA for treatment even for a hang nail, because I have had previous dealings with them. They were recently in the news for everything that they were not doing for most of us vets. When someone has CML or any other major disease then most of the doctors at the VA are not skilled or even trained in this field. I am glad to see that you also have a true oncologist that is taking care of you. And, thank you for serving. 18's, Marty On Thu, Jan 15, 2015 at 12:32 AM, Richard Hwrote: I am my own advocate, I do have two ONCs. One is at a new regional cancer center and i am completing 12 years of treatment with. The other is with the VA. They are assigning me underqualified Drs. that should not be trying to treat me, but only approving the medication prescribed by the specialist. The VA Doctor has no actual experience in Blood Cancers. I will start the procedures tomorrow to resolve this. Richard H. On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: Hi Richard and Jeanie I would think that they would want you to be informed. I hope your issues resolve soon Best wishes Shannon On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com wrote: Hi Richard and thanks for the update. My onc doesn't like for me to be informed either; he just ignores what I say and goes on to tell me what he thinks. My uric acid was high along with my WBC and Platelets. He seemed to be more concerned with the high uric acid--even called me on my cell personally twice; never had that happen before. He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the same thing they did 11 years ago when I was first dx. He took another blood sample to see if I have a mutation a
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Greenie, if I were you I would appeal this decision. You have absolutely nothing to loose. Now you know why I want nothing to do with the VA. 18's, Marty On Fri, Jan 16, 2015 at 7:34 AM, Myvety2k via CMLHope < cmlhope@googlegroups.com> wrote: > Good morning Marty, The VA, they are on my I don't want to talk about > list. > I received a letter last week to see if I'm eligibility for choice card > benefits. So I call their number and Secretary Bob left me a message > thanking me for my years of service. I was in the Navy for 6 years, from > 1956 to 1962, 3 years of active duty and 3 years of active reserve. > > I gave the women my information and she told me that I I'm not eligibility > for anything. All I want is to get hearing ads. She told me that I make > to much money, What, to much money are you kidding me. She said I make > $238.00 a month to much and I don't qualify. When you turn in you income > taxes they check you income. I guess I should have gotten married and had > kids after getting out of high school or went into college or moved into > Canada. But no I went into the Navy then after getting out I went into > college. > > Thank you Secretary Bob. > > greenie > > In a message dated 1/16/2015 7:09:14 A.M. Eastern Standard Time, > wa2...@gmail.com writes: > > Hi Richard, > > It seems that you are between a rock and a hard place with the VA. That is > something that you must deal with but if there is ever a chance to get rid > of them for your meds or care then I don't need to go further... > > I wish you the best of luck. > > 18's. > > Marty > > On Fri, Jan 16, 2015 at 12:32 AM, Richard H wrote: > >> Thanks for your service. The only reason I use the VA is to get my >> medicine. Seeing I am a cancer patient I am forced to see an Oncologist >> get them to sing the prescription. Without the VA I could not afford the >> Health Insurance copay until I could get assistance from the Drug >> company. He was the last one before I took 6 1/2 year vacation. Went I >> came back he decided he was going to be my primary ONC We had a discussion >> about who my Primary ONC was too be. At that point he went rogue (like a >> raging elephant.) I had to take a blood test (CBC+DIF) today so they could >> check the progress of the CML. That is not going to help at all. My >> CBC+DIF has not shown any change since the CMLstarted its Upward trend. As >> of today it was decided that I start 300mg of Gleevec. I contact my >> preferred ONC as soon I see any weight gain. Fortunately my Primary ONC is >> also building his own file to assist me clear this hurdle.. >> >> I have several friends and family that have to go as they are disabled >> Vets. Most are being treated for Agent Orange and/or PSD. >> >> As Always. 18's and My your tomorrow be all sunshine & roses. >> >> Richard H. >> >> On Thursday, January 15, 2015 at 4:13:53 AM UTC-6, wa2yyx wrote: >> >>> Richard, I am a vet and I would never go to the VA for treatment even >>> for a hang nail, because I have had previous dealings with them. They were >>> recently in the news for everything that they were not doing for most of us >>> vets. >>> >>> When someone has CML or any other major disease then most of the doctors >>> at the VA are not skilled or even trained in this field. I am glad to see >>> that you also have a true oncologist that is taking care of you. >>> >>> And, thank you for serving. >>> >>> 18's, >>> >>> Marty >>> >>> >>> >>> On Thu, Jan 15, 2015 at 12:32 AM, Richard H wrote: >>> I am my own advocate, I do have two ONCs. One is at a new regional cancer center and i am completing 12 years of treatment with. The other is with the VA. They are assigning me underqualified Drs. that should not be trying to treat me, but only approving the medication prescribed by the specialist. The VA Doctor has no actual experience in Blood Cancers. I will start the procedures tomorrow to resolve this. Richard H. On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: > > Hi Richard and Jeanie > > I would think that they would want you to be informed. I hope your > issues resolve soon > Best wishes Shannon > > On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com > wrote: >> >> Hi Richard and thanks for the update. My onc doesn't like for me >> to be informed either; he just ignores what I say and goes on to tell me >> what he thinks. >> My uric acid was high along with my WBC and Platelets. He seemed to >> be more concerned with the high uric acid--even called me on my cell >> personally twice; never had that happen before. >> He took me off Sprycel adn put me on Hydrea and allopurinol; it's >> funny the same thing they did 11 years ago when I was first dx. >> He took another blood sample to see if I have a mutation against the >> Sprycel. It seems strange that I had a mutation w
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Got everything done-- had to spend all day__ Got to start a new med--ponatinib-- anyone take this? Got to see if my insurance will pay I see dr balducci at Moffitt. He is the head of senior adult oncology there. Blood counts were good. Thanks for all your prayers. Very tired. Blessings Jeanie🌴🐟🐟 Sent from my iPhone > On Jan 16, 2015, at 12:40 AM, Pete Pabon wrote: > > jeanie, Who is your doctor at Moffitt > > > > Date: Wed, 14 Jan 2015 21:32:26 -0800 > From: rbhuffm...@gmail.com > To: cmlhope@googlegroups.com > CC: icandoall...@aol.com > Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? > > I am my own advocate, I do have two ONCs. One is at a new regional cancer > center and i am completing 12 years of treatment with. The other is with the > VA. They are assigning me underqualified Drs. that should not be trying to > treat me, but only approving the medication prescribed by the specialist. > The VA Doctor has no actual experience in Blood Cancers. I will start the > procedures tomorrow to resolve this. > > Richard H. > > On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: > Hi Richard and Jeanie > > I would think that they would want you to be informed. I hope your issues > resolve soon > Best wishes Shannon > > On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com wrote: > Hi Richard and thanks for the update. My onc doesn't like for me to be > informed either; he just ignores what I say and goes on to tell me what he > thinks. > My uric acid was high along with my WBC and Platelets. He seemed to be more > concerned with the high uric acid--even called me on my cell personally > twice; never had that happen before. > He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the > same thing they did 11 years ago when I was first dx. > He took another blood sample to see if I have a mutation against the Sprycel. > It seems strange that I had a mutation with Gleevec after 5 years. Is five > years a cut off point? Has anyone else have this happen? Anyone else been on > Hydrea after tki? > Going next week to Moffitt to see if I have the mutation. Will let everyone > know. > The leukemia has reared it's ugly head once again!! > Pray for me and everyone in need. > Blessings > Jeanie > (18) > > > In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, > rbhuf...@gmail.com writes: > WOW! Just read todays posts. I am praying for the group. I will add my > problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds water > weight in 20 days after restarting Gleevec. His nurse called that he was out > of the country on vacation with his family. She checked with the DR. > covering for him and he asked me to stop Gleevec as he thought I was gaining > weight too fast also. My ONC did return to theoffice on Monday but > finally had a conference with his Associate and he agreed with that decision. > They both thought that I should be on a different treatment. My ONC was to > draft an e-mail to the VA ONC (the one controlling my prescriptions) about my > reaction to Gleevec and to recommend the treatment he thinks I should be on. > So I am still in a wait and see stage. My ONC tells me I am too informed > about my condition and that challenges most blood cancer specialists that > rarely see CML. > So let the fun and games continue. I am still feeling great, but the > "Gleevec Brain" was also starting to show itself, but nine days off has > cleared it. I'm as sharp as a busted tack, but that is "normal" for me. > > As always, "life" and may your tomorrow be beautiful and better than today. > > Richard H. > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to cml...@googlegroups.com > To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+u...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Good morning Marty, The VA, they are on my I don't want to talk about list. I received a letter last week to see if I'm eligibility for choice card benefits. So I call their number and Secretary Bob left me a message thanking me for my years of service. I was in the Navy for 6 years, from 1956 to 1962, 3 years of active duty and 3 years of active reserve. I gave the women my information and she told me that I I'm not eligibility for anything. All I want is to get hearing ads. She told me that I make to much money, What, to much money are you kidding me. She said I make $238.00 a month to much and I don't qualify. When you turn in you income taxes they check you income. I guess I should have gotten married and had kids after getting out of high school or went into college or moved into Canada. But no I went into the Navy then after getting out I went into college. Thank you Secretary Bob. greenie In a message dated 1/16/2015 7:09:14 A.M. Eastern Standard Time, wa2...@gmail.com writes: Hi Richard, It seems that you are between a rock and a hard place with the VA. That is something that you must deal with but if there is ever a chance to get rid of them for your meds or care then I don't need to go further... I wish you the best of luck. 18's. Marty On Fri, Jan 16, 2015 at 12:32 AM, Richard H <_rbhuffman1@gmail.com_ (mailto:rbhuffm...@gmail.com) > wrote: Thanks for your service. The only reason I use the VA is to get my medicine. Seeing I am a cancer patient I am forced to see an Oncologist get them to sing the prescription. Without the VA I could not afford the Health Insurance copay until I could get assistance from the Drug company. He was the last one before I took 6 1/2 year vacation. Went I came back he decided he was going to be my primary ONC We had a discussion about who my Primary ONC was too be. At that point he went rogue (like a raging elephant.) I had to take a blood test (CBC+DIF) today so they could check the progress of the CML. That is not going to help at all. My CBC+DIF has not shown any change since the CMLstarted its Upward trend. As of today it was decided that I start 300mg of Gleevec. I contact my preferred ONC as soon I see any weight gain. Fortunately my Primary ONC is also building his own file to assist me clear this hurdle.. I have several friends and family that have to go as they are disabled Vets. Most are being treated for Agent Orange and/or PSD. As Always. 18's and My your tomorrow be all sunshine & roses. Richard H. On Thursday, January 15, 2015 at 4:13:53 AM UTC-6, wa2yyx wrote: Richard, I am a vet and I would never go to the VA for treatment even for a hang nail, because I have had previous dealings with them. They were recently in the news for everything that they were not doing for most of us vets. When someone has CML or any other major disease then most of the doctors at the VA are not skilled or even trained in this field. I am glad to see that you also have a true oncologist that is taking care of you. And, thank you for serving. 18's, Marty On Thu, Jan 15, 2015 at 12:32 AM, Richard H wrote: I am my own advocate, I do have two ONCs. One is at a new regional cancer center and i am completing 12 years of treatment with. The other is with the VA. They are assigning me underqualified Drs. that should not be trying to treat me, but only approving the medication prescribed by the specialist. The VA Doctor has no actual experience in Blood Cancers. I will start the procedures tomorrow to resolve this. Richard H. On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: Hi Richard and Jeanie I would think that they would want you to be informed. I hope your issues resolve soon Best wishes Shannon On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com wrote: Hi Richard and thanks for the update. My onc doesn't like for me to be informed either; he just ignores what I say and goes on to tell me what he thinks. My uric acid was high along with my WBC and Platelets. He seemed to be more concerned with the high uric acid--even called me on my cell personally twice; never had that happen before. He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the same thing they did 11 years ago when I was first dx. He took another blood sample to see if I have a mutation against the Sprycel. It seems strange that I had a mutation with Gleevec after 5 years. Is five years a cut off point? Has anyone else have this happen? Anyone else been on Hydrea after tki? Going next week to Moffitt to see if I have the mutation. Will let everyone know. The leukemia has reared it's ugly head once again!! Pray for me and everyone in need. Blessings Jeanie (18) In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, rbhuf...@gmail.com
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Richard, It seems that you are between a rock and a hard place with the VA. That is something that you must deal with but if there is ever a chance to get rid of them for your meds or care then I don't need to go further... I wish you the best of luck. 18's. Marty On Fri, Jan 16, 2015 at 12:32 AM, Richard H wrote: > Thanks for your service. The only reason I use the VA is to get my > medicine. Seeing I am a cancer patient I am forced to see an Oncologist > get them to sing the prescription. Without the VA I could not afford the > Health Insurance copay until I could get assistance from the Drug > company. He was the last one before I took 6 1/2 year vacation. Went I > came back he decided he was going to be my primary ONC We had a discussion > about who my Primary ONC was too be. At that point he went rogue (like a > raging elephant.) I had to take a blood test (CBC+DIF) today so they could > check the progress of the CML. That is not going to help at all. My > CBC+DIF has not shown any change since the CMLstarted its Upward trend. As > of today it was decided that I start 300mg of Gleevec. I contact my > preferred ONC as soon I see any weight gain. Fortunately my Primary ONC is > also building his own file to assist me clear this hurdle.. > > I have several friends and family that have to go as they are disabled > Vets. Most are being treated for Agent Orange and/or PSD. > > As Always. 18's and My your tomorrow be all sunshine & roses. > > Richard H. > > On Thursday, January 15, 2015 at 4:13:53 AM UTC-6, wa2yyx wrote: > >> Richard, I am a vet and I would never go to the VA for treatment even for >> a hang nail, because I have had previous dealings with them. They were >> recently in the news for everything that they were not doing for most of us >> vets. >> >> When someone has CML or any other major disease then most of the doctors >> at the VA are not skilled or even trained in this field. I am glad to see >> that you also have a true oncologist that is taking care of you. >> >> And, thank you for serving. >> >> 18's, >> >> Marty >> >> >> >> On Thu, Jan 15, 2015 at 12:32 AM, Richard H wrote: >> >>> I am my own advocate, I do have two ONCs. One is at a new regional >>> cancer center and i am completing 12 years of treatment with. The other is >>> with the VA. They are assigning me underqualified Drs. that should not be >>> trying to treat me, but only approving the medication prescribed by the >>> specialist. The VA Doctor has no actual experience in Blood Cancers. I >>> will start the procedures tomorrow to resolve this. >>> >>> Richard H. >>> >>> On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: Hi Richard and Jeanie I would think that they would want you to be informed. I hope your issues resolve soon Best wishes Shannon On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com wrote: > > Hi Richard and thanks for the update. My onc doesn't like for me to > be informed either; he just ignores what I say and goes on to tell me what > he thinks. > My uric acid was high along with my WBC and Platelets. He seemed to > be more concerned with the high uric acid--even called me on my cell > personally twice; never had that happen before. > He took me off Sprycel adn put me on Hydrea and allopurinol; it's > funny the same thing they did 11 years ago when I was first dx. > He took another blood sample to see if I have a mutation against the > Sprycel. It seems strange that I had a mutation with Gleevec after 5 > years. Is five years a cut off point? Has anyone else have this happen? > Anyone else been on Hydrea after tki? > Going next week to Moffitt to see if I have the mutation. Will let > everyone know. > The leukemia has reared it's ugly head once again!! > Pray for me and everyone in need. > Blessings > Jeanie > (18) > > > In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, > rbhuf...@gmail.com writes: > > WOW! Just read todays posts. I am praying for the group. I will > add my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 > pounds water weight in 20 days after restarting Gleevec. His nurse called > that he was out of the country on vacation with his family. She checked > with the DR. covering for him and he asked me to stop Gleevec as he > thought > I was gaining weight too fast also. My ONC did return to the office on > Monday but finally had a conference with his Associate and he agreed with > that decision. They both thought that I should be on a different > treatment. My ONC was to draft an e-mail to the VA ONC (the one > controlling my prescriptions) about my reaction to Gleevec and to > recommend > the treatment he thinks I should be on. So I am still in a wait and see > stage. My ONC tells me
RE: [CMLHope] My Update anyone had relapse after 5 years on tkis?
jeanie, Who is your doctor at Moffitt Date: Wed, 14 Jan 2015 21:32:26 -0800 From: rbhuffm...@gmail.com To: cmlhope@googlegroups.com CC: icandoall...@aol.com Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? I am my own advocate, I do have two ONCs. One is at a new regional cancer center and i am completing 12 years of treatment with. The other is with the VA. They are assigning me underqualified Drs. that should not be trying to treat me, but only approving the medication prescribed by the specialist. The VA Doctor has no actual experience in Blood Cancers. I will start the procedures tomorrow to resolve this. Richard H. On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote:Hi Richard and Jeanie I would think that they would want you to be informed. I hope your issues resolve soonBest wishes Shannon On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com wrote: Hi Richard and thanks for the update. My onc doesn't like for me to be informed either; he just ignores what I say and goes on to tell me what he thinks. My uric acid was high along with my WBC and Platelets. He seemed to be more concerned with the high uric acid--even called me on my cell personally twice; never had that happen before. He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the same thing they did 11 years ago when I was first dx. He took another blood sample to see if I have a mutation against the Sprycel. It seems strange that I had a mutation with Gleevec after 5 years. Is five years a cut off point? Has anyone else have this happen? Anyone else been on Hydrea after tki? Going next week to Moffitt to see if I have the mutation. Will let everyone know. The leukemia has reared it's ugly head once again!! Pray for me and everyone in need. Blessings Jeanie (18) In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, rbhuf...@gmail.com writes: WOW! Just read todays posts. I am praying for the group. I will add my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds water weight in 20 days after restarting Gleevec. His nurse called that he was out of the country on vacation with his family. She checked with the DR. covering for him and he asked me to stop Gleevec as he thought I was gaining weight too fast also. My ONC did return to the office on Monday but finally had a conference with his Associate and he agreed with that decision. They both thought that I should be on a different treatment. My ONC was to draft an e-mail to the VA ONC (the one controlling my prescriptions) about my reaction to Gleevec and to recommend the treatment he thinks I should be on. So I am still in a wait and see stage. My ONC tells me I am too informed about my condition and that challenges most blood cancer specialists that rarely see CML. So let the fun and games continue. I am still feeling great, but the "Gleevec Brain" was also starting to show itself, but nine days off has cleared it. I'm as sharp as a busted tack, but that is "normal" for me. As always, "life" and may your tomorrow be beautiful and better than today. Richard H. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Thanks for your service. The only reason I use the VA is to get my medicine. Seeing I am a cancer patient I am forced to see an Oncologist get them to sing the prescription. Without the VA I could not afford the Health Insurance copay until I could get assistance from the Drug company. He was the last one before I took 6 1/2 year vacation. Went I came back he decided he was going to be my primary ONC We had a discussion about who my Primary ONC was too be. At that point he went rogue (like a raging elephant.) I had to take a blood test (CBC+DIF) today so they could check the progress of the CML. That is not going to help at all. My CBC+DIF has not shown any change since the CMLstarted its Upward trend. As of today it was decided that I start 300mg of Gleevec. I contact my preferred ONC as soon I see any weight gain. Fortunately my Primary ONC is also building his own file to assist me clear this hurdle.. I have several friends and family that have to go as they are disabled Vets. Most are being treated for Agent Orange and/or PSD. As Always. 18's and My your tomorrow be all sunshine & roses. Richard H. On Thursday, January 15, 2015 at 4:13:53 AM UTC-6, wa2yyx wrote: > Richard, I am a vet and I would never go to the VA for treatment even for > a hang nail, because I have had previous dealings with them. They were > recently in the news for everything that they were not doing for most of us > vets. > > When someone has CML or any other major disease then most of the doctors > at the VA are not skilled or even trained in this field. I am glad to see > that you also have a true oncologist that is taking care of you. > > And, thank you for serving. > > 18's, > > Marty > > > > On Thu, Jan 15, 2015 at 12:32 AM, Richard H > wrote: > >> I am my own advocate, I do have two ONCs. One is at a new regional >> cancer center and i am completing 12 years of treatment with. The other is >> with the VA. They are assigning me underqualified Drs. that should not be >> trying to treat me, but only approving the medication prescribed by the >> specialist. The VA Doctor has no actual experience in Blood Cancers. I >> will start the procedures tomorrow to resolve this. >> >> Richard H. >> >> On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: >>> >>> Hi Richard and Jeanie >>> >>> I would think that they would want you to be informed. I hope your >>> issues resolve soon >>> Best wishes Shannon >>> >>> On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com >>> wrote: Hi Richard and thanks for the update. My onc doesn't like for me to be informed either; he just ignores what I say and goes on to tell me what he thinks. My uric acid was high along with my WBC and Platelets. He seemed to be more concerned with the high uric acid--even called me on my cell personally twice; never had that happen before. He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the same thing they did 11 years ago when I was first dx. He took another blood sample to see if I have a mutation against the Sprycel. It seems strange that I had a mutation with Gleevec after 5 years. Is five years a cut off point? Has anyone else have this happen? Anyone else been on Hydrea after tki? Going next week to Moffitt to see if I have the mutation. Will let everyone know. The leukemia has reared it's ugly head once again!! Pray for me and everyone in need. Blessings Jeanie (18) In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, rbhuf...@gmail.com writes: WOW! Just read todays posts. I am praying for the group. I will add my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds water weight in 20 days after restarting Gleevec. His nurse called that he was out of the country on vacation with his family. She checked with the DR. covering for him and he asked me to stop Gleevec as he thought I was gaining weight too fast also. My ONC did return to the office on Monday but finally had a conference with his Associate and he agreed with that decision. They both thought that I should be on a different treatment. My ONC was to draft an e-mail to the VA ONC (the one controlling my prescriptions) about my reaction to Gleevec and to recommend the treatment he thinks I should be on. So I am still in a wait and see stage. My ONC tells me I am too informed about my condition and that challenges most blood cancer specialists that rarely see CML. So let the fun and games continue. I am still feeling great, but the "Gleevec Brain" was also starting to show itself, but nine days off has cleared it. I'm as sharp as a busted tack, but that is "normal" for me. As always, "life" and may y
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi again Greenie, Like you said, don't look back but only forward. By the way, I am an animal lover whether it be dogs, cats, birds or fish. I am glad to hear that you threw back those fish where they belong. 18's, Marty On Thu, Jan 15, 2015 at 2:17 PM, Myvety2k via CMLHope < cmlhope@googlegroups.com> wrote: > Marty, My aunt left me some stock and money and one of the stocks was > Novartis and my stock guy told me to sell it. That was before Gleevec was > in any kind of study. Because of him I also lost $43,000.00 and I pulled > my money out and fired him. If I, would have, could of. Of course I wish I > would have kept some of my early Corvette's that I had I would be worth a > more money then Novartis. But can't look back, just look forward. > > Thanks for your reply, also I live in South Fort Myers not far from the > beach. In fact I went fishing yesterday by the beach and caught 8 fish. > But I do not keep any, back into the water they go where they belong. > > greenie > > > > In a message dated 1/15/2015 1:09:00 P.M. Eastern Standard Time, > wa2...@gmail.com writes: > > Hi Greenie, > > First, where in Florida do you live? I am on the east coast, Boynton > Beach. If we are not to far maybe we can do lunch one of these days. If my > memory serves me right I think that you may be in Ft Meyers??? If so then I > guess that lunch is out of the question... > > About STI571. Do you know how it came about? As everyone already knows Dr. > Brian Druker who was the one that had first discovered it. He tried finding > a drug company that would produce it and finally found Novartis which was > at the time an agricultural drug company. > > One of Dr. Drukers patients was Zavie Miller who was trying out STI571 and > it was working. Novartis didn't want to produce it in quantity because of > the start up costs. Both Zavie and I got in touch with one of the > principals of Novartis and told him that we may be able to bring a lot of > investors into the company. > > At the time there was another CML site and we got on and asked if people > would like to invest in the Novartis stock. At that time their stock price > was $1,200 a share but there were also what is called American registry > shares of Novartis that was selling for only $20.00 a share. > > Everyone started buying those shares and Novartis then started production > but only after it was approved by the FDA which normally takes about 10 > years. With pressure being put on the FDA STI571 was approved in about one > and a half years, and became Gleevec. > > I bought many shares of Gleevec at $20.00 a share and have nor will I ever > sell them because of my support for Novartis. As of my December stock > portfolio Novartis is listed at 92.6600. Novartis stock has continuously > gone up and up over the years. > > I am however disappointed in the price they are getting, most notably > there are people with CML that can not afford it. Now Novartis does have > some options for those that are having a difficult time but it still would > be nice if Novartis would look back at what they were and what they are > now, and maybe consider dropping their price for Gleevec. Wishful thinking? > Maybe but maybe not, hopefully... > > But Greenie, as you mentioned it is all about greed and money. > > 18's, > > Marty > > On Thu, Jan 15, 2015 at 9:32 AM, Myvety2k via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Thank you Marty, Everything you wrote is so true about Gleevec and >> CML. It's unfortunate that greed and money has to be in the equations in >> the final outcome. After Interferon that almost killed me all that was >> left was Hydrea. So when Doctor Tallman called me and wanted be in his >> study for STI571 I had no idea what was going on. Within 3 months I was >> 85% clean and after 6 months I was clean. Yes their have been over the >> years some up's and down's put that's part of life. Like my late Aunt used >> to always say when she was in her 80's I just take one day at a time. >> >> I wound like to see a cure in my life time because the old hour glass is >> starting to run low on sand.. And the way these people drive here in >> Florida the end could come anytime I leave the friendly confines and that's >> not any guarantee because most of the people speed and run the stop signs >> in this 55 and older community. >> >> Keep in touch, >> >> Greenie >> >> In a message dated 1/15/2015 8:11:39 A.M. Eastern Standard Time, >> wa2...@gmail.com writes: >> >> >> Hi Greenie, >> >> So you have been on Gleevec for 15 years. That is something good to know >> because what would you have done without Gleevec? This drug is responsible >> for saving countless lives. Thank GOD it is here or you wouldn't be here >> right now. >> >> If it weren't for dialysis neither would I be here right now. This is the >> advancement of what medicine has on our lives today. I always say that >> there will be a cure for CML and you can mark my words it WILL come soon. >> Just
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Marty, by the way my first Doctor at Northwestern, Dr. Tallman worked with Doctor Druker. He left their and went to Chicago. Now he's at Cornell University. My Doctor now in Chicago is the same one that Susan has, Dr. Altman. greenie In a message dated 1/15/2015 1:09:00 P.M. Eastern Standard Time, wa2...@gmail.com writes: Hi Greenie, First, where in Florida do you live? I am on the east coast, Boynton Beach. If we are not to far maybe we can do lunch one of these days. If my memory serves me right I think that you may be in Ft Meyers??? If so then I guess that lunch is out of the question... About STI571. Do you know how it came about? As everyone already knows Dr. Brian Druker who was the one that had first discovered it. He tried finding a drug company that would produce it and finally found Novartis which was at the time an agricultural drug company. One of Dr. Drukers patients was Zavie Miller who was trying out STI571 and it was working. Novartis didn't want to produce it in quantity because of the start up costs. Both Zavie and I got in touch with one of the principals of Novartis and told him that we may be able to bring a lot of investors into the company. At the time there was another CML site and we got on and asked if people would like to invest in the Novartis stock. At that time their stock price was $1,200 a share but there were also what is called American registry shares of Novartis that was selling for only $20.00 a share. Everyone started buying those shares and Novartis then started production but only after it was approved by the FDA which normally takes about 10 years. With pressure being put on the FDA STI571 was approved in about one and a half years, and became Gleevec. I bought many shares of Gleevec at $20.00 a share and have nor will I ever sell them because of my support for Novartis. As of my December stock portfolio Novartis is listed at 92.6600. Novartis stock has continuously gone up and up over the years. I am however disappointed in the price they are getting, most notably there are people with CML that can not afford it. Now Novartis does have some options for those that are having a difficult time but it still would be nice if Novartis would look back at what they were and what they are now, and maybe consider dropping their price for Gleevec. Wishful thinking? Maybe but maybe not, hopefully... But Greenie, as you mentioned it is all about greed and money. 18's, Marty On Thu, Jan 15, 2015 at 9:32 AM, Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Thank you Marty, Everything you wrote is so true about Gleevec and CML. It's unfortunate that greed and money has to be in the equations in the final outcome. After Interferon that almost killed me all that was left was Hydrea. So when Doctor Tallman called me and wanted be in his study for STI571 I had no idea what was going on. Within 3 months I was 85% clean and after 6 months I was clean. Yes their have been over the years some up's and down's put that's part of life. Like my late Aunt used to always say when she was in her 80's I just take one day at a time. I wound like to see a cure in my life time because the old hour glass is starting to run low on sand.. And the way these people drive here in Florida the end could come anytime I leave the friendly confines and that's not any guarantee because most of the people speed and run the stop signs in this 55 and older community. Keep in touch, Greenie In a message dated 1/15/2015 8:11:39 A.M. Eastern Standard Time, _wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) writes: Hi Greenie, So you have been on Gleevec for 15 years. That is something good to know because what would you have done without Gleevec? This drug is responsible for saving countless lives. Thank GOD it is here or you wouldn't be here right now. If it weren't for dialysis neither would I be here right now. This is the advancement of what medicine has on our lives today. I always say that there will be a cure for CML and you can mark my words it WILL come soon. Just like all of the things that were not around years ago now they are coming. GOD bless you Greenie! 18's, Marty On Thu, Jan 15, 2015 at 5:47 AM, Shannon L <_shannonl.camden@gmail.com_ (mailto:shannonl.cam...@gmail.com) > wrote: Hi Greenie 15 yrs on glivec, i will be 14yrs this yr (started roughly 3 yrs after dx) Shannon On Saturday, January 10, 2015 at 12:11:08 AM UTC+11, greenie wrote: Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. Starting to retain fluid around my ankles a little but that could be and age thing. 75 years old. greenie In a message dated 1/9/2015 7:53:41 A.M. Eastern Standard Time, cml...@googlegroups.com writes: Hi Richard and thanks for the update. My onc doesn't like for
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Marty, My aunt left me some stock and money and one of the stocks was Novartis and my stock guy told me to sell it. That was before Gleevec was in any kind of study. Because of him I also lost $43,000.00 and I pulled my money out and fired him. If I, would have, could of. Of course I wish I would have kept some of my early Corvette's that I had I would be worth a more money then Novartis. But can't look back, just look forward. Thanks for your reply, also I live in South Fort Myers not far from the beach. In fact I went fishing yesterday by the beach and caught 8 fish. But I do not keep any, back into the water they go where they belong. greenie In a message dated 1/15/2015 1:09:00 P.M. Eastern Standard Time, wa2...@gmail.com writes: Hi Greenie, First, where in Florida do you live? I am on the east coast, Boynton Beach. If we are not to far maybe we can do lunch one of these days. If my memory serves me right I think that you may be in Ft Meyers??? If so then I guess that lunch is out of the question... About STI571. Do you know how it came about? As everyone already knows Dr. Brian Druker who was the one that had first discovered it. He tried finding a drug company that would produce it and finally found Novartis which was at the time an agricultural drug company. One of Dr. Drukers patients was Zavie Miller who was trying out STI571 and it was working. Novartis didn't want to produce it in quantity because of the start up costs. Both Zavie and I got in touch with one of the principals of Novartis and told him that we may be able to bring a lot of investors into the company. At the time there was another CML site and we got on and asked if people would like to invest in the Novartis stock. At that time their stock price was $1,200 a share but there were also what is called American registry shares of Novartis that was selling for only $20.00 a share. Everyone started buying those shares and Novartis then started production but only after it was approved by the FDA which normally takes about 10 years. With pressure being put on the FDA STI571 was approved in about one and a half years, and became Gleevec. I bought many shares of Gleevec at $20.00 a share and have nor will I ever sell them because of my support for Novartis. As of my December stock portfolio Novartis is listed at 92.6600. Novartis stock has continuously gone up and up over the years. I am however disappointed in the price they are getting, most notably there are people with CML that can not afford it. Now Novartis does have some options for those that are having a difficult time but it still would be nice if Novartis would look back at what they were and what they are now, and maybe consider dropping their price for Gleevec. Wishful thinking? Maybe but maybe not, hopefully... But Greenie, as you mentioned it is all about greed and money. 18's, Marty On Thu, Jan 15, 2015 at 9:32 AM, Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Thank you Marty, Everything you wrote is so true about Gleevec and CML. It's unfortunate that greed and money has to be in the equations in the final outcome. After Interferon that almost killed me all that was left was Hydrea. So when Doctor Tallman called me and wanted be in his study for STI571 I had no idea what was going on. Within 3 months I was 85% clean and after 6 months I was clean. Yes their have been over the years some up's and down's put that's part of life. Like my late Aunt used to always say when she was in her 80's I just take one day at a time. I wound like to see a cure in my life time because the old hour glass is starting to run low on sand.. And the way these people drive here in Florida the end could come anytime I leave the friendly confines and that's not any guarantee because most of the people speed and run the stop signs in this 55 and older community. Keep in touch, Greenie In a message dated 1/15/2015 8:11:39 A.M. Eastern Standard Time, _wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) writes: Hi Greenie, So you have been on Gleevec for 15 years. That is something good to know because what would you have done without Gleevec? This drug is responsible for saving countless lives. Thank GOD it is here or you wouldn't be here right now. If it weren't for dialysis neither would I be here right now. This is the advancement of what medicine has on our lives today. I always say that there will be a cure for CML and you can mark my words it WILL come soon. Just like all of the things that were not around years ago now they are coming. GOD bless you Greenie! 18's, Marty On Thu, Jan 15, 2015 at 5:47 AM, Shannon L <_shannonl.camden@gmail.com_ (mailto:shannonl.cam...@gmail.com) > wrote: Hi Greenie 15 yrs on glivec, i will be 14yrs this yr (started roughly 3 yrs af
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Greenie, First, where in Florida do you live? I am on the east coast, Boynton Beach. If we are not to far maybe we can do lunch one of these days. If my memory serves me right I think that you may be in Ft Meyers??? If so then I guess that lunch is out of the question... About STI571. Do you know how it came about? As everyone already knows Dr. Brian Druker who was the one that had first discovered it. He tried finding a drug company that would produce it and finally found Novartis which was at the time an agricultural drug company. One of Dr. Drukers patients was Zavie Miller who was trying out STI571 and it was working. Novartis didn't want to produce it in quantity because of the start up costs. Both Zavie and I got in touch with one of the principals of Novartis and told him that we may be able to bring a lot of investors into the company. At the time there was another CML site and we got on and asked if people would like to invest in the Novartis stock. At that time their stock price was $1,200 a share but there were also what is called American registry shares of Novartis that was selling for only $20.00 a share. Everyone started buying those shares and Novartis then started production but only after it was approved by the FDA which normally takes about 10 years. With pressure being put on the FDA STI571 was approved in about one and a half years, and became Gleevec. I bought many shares of Gleevec at $20.00 a share and have nor will I ever sell them because of my support for Novartis. As of my December stock portfolio Novartis is listed at 92.6600. Novartis stock has continuously gone up and up over the years. I am however disappointed in the price they are getting, most notably there are people with CML that can not afford it. Now Novartis does have some options for those that are having a difficult time but it still would be nice if Novartis would look back at what they were and what they are now, and maybe consider dropping their price for Gleevec. Wishful thinking? Maybe but maybe not, hopefully... But Greenie, as you mentioned it is all about greed and money. 18's, Marty On Thu, Jan 15, 2015 at 9:32 AM, Myvety2k via CMLHope < cmlhope@googlegroups.com> wrote: > Thank you Marty, Everything you wrote is so true about Gleevec and > CML. It's unfortunate that greed and money has to be in the equations in > the final outcome. After Interferon that almost killed me all that was > left was Hydrea. So when Doctor Tallman called me and wanted be in his > study for STI571 I had no idea what was going on. Within 3 months I was > 85% clean and after 6 months I was clean. Yes their have been over the > years some up's and down's put that's part of life. Like my late Aunt used > to always say when she was in her 80's I just take one day at a time. > > I wound like to see a cure in my life time because the old hour glass is > starting to run low on sand.. And the way these people drive here in > Florida the end could come anytime I leave the friendly confines and that's > not any guarantee because most of the people speed and run the stop signs > in this 55 and older community. > > Keep in touch, > > Greenie > > In a message dated 1/15/2015 8:11:39 A.M. Eastern Standard Time, > wa2...@gmail.com writes: > > > Hi Greenie, > > So you have been on Gleevec for 15 years. That is something good to know > because what would you have done without Gleevec? This drug is responsible > for saving countless lives. Thank GOD it is here or you wouldn't be here > right now. > > If it weren't for dialysis neither would I be here right now. This is the > advancement of what medicine has on our lives today. I always say that > there will be a cure for CML and you can mark my words it WILL come soon. > Just like all of the things that were not around years ago now they are > coming. > > GOD bless you Greenie! > > 18's, > > Marty > > On Thu, Jan 15, 2015 at 5:47 AM, Shannon L > wrote: > >> Hi Greenie 15 yrs on glivec, i will be 14yrs this yr (started roughly 3 >> yrs after dx) >> Shannon >> >> On Saturday, January 10, 2015 at 12:11:08 AM UTC+11, greenie wrote: >>> >>> Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. >>> Starting to retain fluid around my ankles a little but that could be and >>> age thing. 75 years old. >>> >>> greenie >>> >>> In a message dated 1/9/2015 7:53:41 A.M. Eastern Standard Time, >>> cml...@googlegroups.com writes: >>> >>> Hi Richard and thanks for the update. My onc doesn't like for me to be >>> informed either; he just ignores what I say and goes on to tell me what he >>> thinks. >>> My uric acid was high along with my WBC and Platelets. He seemed to be >>> more concerned with the high uric acid--even called me on my cell >>> personally twice; never had that happen before. >>> He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny >>> the same thing they did 11 years ago when I was first dx. >>> He took another blood sample to see if I have
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
On Wednesday, January 14, 2015, Richard H wrote: > I am my own advocate, I do have two ONCs. One is at a new regional cancer > center and i am completing 12 years of treatment with. The other is with > the VA. They are assigning me underqualified Drs. that should not be > trying to treat me, but only approving the medication prescribed by the > specialist. The VA Doctor has no actual experience in Blood Cancers. I > will start the procedures tomorrow to resolve this. > > Richard H. > > On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: >> >> Hi Richard and Jeanie >> >> I would think that they would want you to be informed. I hope your issues >> resolve soon >> Best wishes Shannon >> >> On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com >> wrote: >>> >>> Hi Richard and thanks for the update. My onc doesn't like for me to >>> be informed either; he just ignores what I say and goes on to tell me what >>> he thinks. >>> My uric acid was high along with my WBC and Platelets. He seemed to be >>> more concerned with the high uric acid--even called me on my cell >>> personally twice; never had that happen before. >>> He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny >>> the same thing they did 11 years ago when I was first dx. >>> He took another blood sample to see if I have a mutation against the >>> Sprycel. It seems strange that I had a mutation with Gleevec after 5 >>> years. Is five years a cut off point? Has anyone else have this happen? >>> Anyone else been on Hydrea after tki? >>> Going next week to Moffitt to see if I have the mutation. Will let >>> everyone know. >>> The leukemia has reared it's ugly head once again!! >>> Pray for me and everyone in need. >>> Blessings >>> Jeanie >>> (18) >>> >>> >>> In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, >>> rbhuf...@gmail.com writes: >>> >>> WOW! Just read todays posts. I am praying for the group. I will add >>> my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds >>> water weight in 20 days after restarting Gleevec. His nurse called that he >>> was out of the country on vacation with his family. She checked with the >>> DR. covering for him and he asked me to stop Gleevec as he thought I was >>> gaining weight too fast also. My ONC did return to the office on Monday >>> but finally had a conference with his Associate and he agreed with that >>> decision. They both thought that I should be on a different treatment. My >>> ONC was to draft an e-mail to the VA ONC (the one controlling my >>> prescriptions) about my reaction to Gleevec and to recommend the >>> treatment he thinks I should be on. So I am still in a wait and see >>> stage. My ONC tells me I am too informed about my condition and that >>> challenges most blood cancer specialists that rarely see CML. >>> So let the fun and games continue. I am still feeling great, but the >>> "Gleevec Brain" was also starting to show itself, but nine days off has >>> cleared it. I'm as sharp as a busted tack, but that is "normal" for me. >>> >>> As always, "life" and may your tomorrow be beautiful and better than >>> today. >>> >>> Richard H. >>> >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> - >>> >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To post to this group, send email to cml...@googlegroups.com >>> To unsubscribe from this group, send email to >>> cmlhope-u...@googlegroups.com >>> For more options, visit this group at http://groups.google.com/ >>> group/CMLHope >>> --- >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To unsubscribe from this group and stop receiving emails from it, send >>> an email to cmlhope+u...@googlegroups.com. >>> For more options, visit https://groups.google.com/d/optout. >>> >>> -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com > . > For more options, visit https://groups.google.com/d/optout. > -- -- tcan...@gmail.com -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@google
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Thank you Marty, Everything you wrote is so true about Gleevec and CML. It's unfortunate that greed and money has to be in the equations in the final outcome. After Interferon that almost killed me all that was left was Hydrea. So when Doctor Tallman called me and wanted be in his study for STI571 I had no idea what was going on. Within 3 months I was 85% clean and after 6 months I was clean. Yes their have been over the years some up's and down's put that's part of life. Like my late Aunt used to always say when she was in her 80's I just take one day at a time. I wound like to see a cure in my life time because the old hour glass is starting to run low on sand.. And the way these people drive here in Florida the end could come anytime I leave the friendly confines and that's not any guarantee because most of the people speed and run the stop signs in this 55 and older community. Keep in touch, Greenie In a message dated 1/15/2015 8:11:39 A.M. Eastern Standard Time, wa2...@gmail.com writes: Hi Greenie, So you have been on Gleevec for 15 years. That is something good to know because what would you have done without Gleevec? This drug is responsible for saving countless lives. Thank GOD it is here or you wouldn't be here right now. If it weren't for dialysis neither would I be here right now. This is the advancement of what medicine has on our lives today. I always say that there will be a cure for CML and you can mark my words it WILL come soon. Just like all of the things that were not around years ago now they are coming. GOD bless you Greenie! 18's, Marty On Thu, Jan 15, 2015 at 5:47 AM, Shannon L <_shannonl.camden@gmail.com_ (mailto:shannonl.cam...@gmail.com) > wrote: Hi Greenie 15 yrs on glivec, i will be 14yrs this yr (started roughly 3 yrs after dx) Shannon On Saturday, January 10, 2015 at 12:11:08 AM UTC+11, greenie wrote: Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. Starting to retain fluid around my ankles a little but that could be and age thing. 75 years old. greenie In a message dated 1/9/2015 7:53:41 A.M. Eastern Standard Time, cml...@googlegroups.com writes: Hi Richard and thanks for the update. My onc doesn't like for me to be informed either; he just ignores what I say and goes on to tell me what he thinks. My uric acid was high along with my WBC and Platelets. He seemed to be more concerned with the high uric acid--even called me on my cell personally twice; never had that happen before. He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the same thing they did 11 years ago when I was first dx. He took another blood sample to see if I have a mutation against the Sprycel. It seems strange that I had a mutation with Gleevec after 5 years. Is five years a cut off point? Has anyone else have this happen? Anyone else been on Hydrea after tki? Going next week to Moffitt to see if I have the mutation. Will let everyone know. The leukemia has reared it's ugly head once again!! Pray for me and everyone in need. Blessings Jeanie (18) In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, rbhuf...@gmail.com writes: WOW! Just read todays posts. I am praying for the group. I will add my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds water weight in 20 days after restarting Gleevec. His nurse called that he was out of the country on vacation with his family. She checked with the DR. covering for him and he asked me to stop Gleevec as he thought I was gaining weight too fast also. My ONC did return to the office on Monday but finally had a conference with his Associate and he agreed with that decision. They both thought that I should be on a different treatment. My ONC was to draft an e-mail to the VA ONC (the one controlling my prescriptions) about my reaction to Gleevec and to recommend the treatment he thinks I should be on. So I am still in a wait and see stage. My ONC tells me I am too informed about my condition and that challenges most blood cancer specialists that rarely see CML. So let the fun and games continue. I am still feeling great, but the "Gleevec Brain" was also starting to show itself, but nine days off has cleared it. I'm as sharp as a busted tack, but that is "normal" for me. As always, "life" and may your tomorrow be beautiful and better than today. Richard H. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You receiv
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Greenie, So you have been on Gleevec for 15 years. That is something good to know because what would you have done without Gleevec? This drug is responsible for saving countless lives. Thank GOD it is here or you wouldn't be here right now. If it weren't for dialysis neither would I be here right now. This is the advancement of what medicine has on our lives today. I always say that there will be a cure for CML and you can mark my words it WILL come soon. Just like all of the things that were not around years ago now they are coming. GOD bless you Greenie! 18's, Marty On Thu, Jan 15, 2015 at 5:47 AM, Shannon L wrote: > Hi Greenie 15 yrs on glivec, i will be 14yrs this yr (started roughly 3 > yrs after dx) > Shannon > > On Saturday, January 10, 2015 at 12:11:08 AM UTC+11, greenie wrote: >> >> Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. >> Starting to retain fluid around my ankles a little but that could be and >> age thing. 75 years old. >> >> greenie >> >> In a message dated 1/9/2015 7:53:41 A.M. Eastern Standard Time, >> cml...@googlegroups.com writes: >> >> Hi Richard and thanks for the update. My onc doesn't like for me to be >> informed either; he just ignores what I say and goes on to tell me what he >> thinks. >> My uric acid was high along with my WBC and Platelets. He seemed to be >> more concerned with the high uric acid--even called me on my cell >> personally twice; never had that happen before. >> He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny >> the same thing they did 11 years ago when I was first dx. >> He took another blood sample to see if I have a mutation against the >> Sprycel. It seems strange that I had a mutation with Gleevec after 5 >> years. Is five years a cut off point? Has anyone else have this happen? >> Anyone else been on Hydrea after tki? >> Going next week to Moffitt to see if I have the mutation. Will let >> everyone know. >> The leukemia has reared it's ugly head once again!! >> Pray for me and everyone in need. >> Blessings >> Jeanie >> (18) >> >> >> In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, >> rbhuf...@gmail.com writes: >> >> WOW! Just read todays posts. I am praying for the group. I will add >> my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds >> water weight in 20 days after restarting Gleevec. His nurse called that he >> was out of the country on vacation with his family. She checked with the >> DR. covering for him and he asked me to stop Gleevec as he thought I was >> gaining weight too fast also. My ONC did return to the office on Monday >> but finally had a conference with his Associate and he agreed with that >> decision. They both thought that I should be on a different treatment. My >> ONC was to draft an e-mail to the VA ONC (the one controlling my >> prescriptions) about my reaction to Gleevec and to recommend the >> treatment he thinks I should be on. So I am still in a wait and see >> stage. My ONC tells me I am too informed about my condition and that >> challenges most blood cancer specialists that rarely see CML. >> So let the fun and games continue. I am still feeling great, but the >> "Gleevec Brain" was also starting to show itself, but nine days off has >> cleared it. I'm as sharp as a busted tack, but that is "normal" for me. >> >> As always, "life" and may your tomorrow be beautiful and better than >> today. >> >> Richard H. >> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> - >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to cml...@googlegroups.com >> To unsubscribe from this group, send email to CMLHope-u...@ >> googlegroups.com >> For more options, visit this group at http://groups.google.com/ >> group/CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to cmlhope+u...@googlegroups.com. >> For more options, visit https://groups.google.com/d/optout. >> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> - >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to cml...@googlegroups.com >> To unsubscribe from this group, send email to CMLHope-u...@ >> googlegroups.com >> For more options, visit this group at http://groups.google.com/ >> group/CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to cmlhope+u...@googlegroups.com. >> For more options, visit https://groups.google.com/d/optout. >> >> -- > -- > [CMLHope] > A support group o
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Greenie 15 yrs on glivec, i will be 14yrs this yr (started roughly 3 yrs after dx) Shannon On Saturday, January 10, 2015 at 12:11:08 AM UTC+11, greenie wrote: > > Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. > Starting to retain fluid around my ankles a little but that could be and > age thing. 75 years old. > > greenie > > In a message dated 1/9/2015 7:53:41 A.M. Eastern Standard Time, > cml...@googlegroups.com writes: > > Hi Richard and thanks for the update. My onc doesn't like for me to be > informed either; he just ignores what I say and goes on to tell me what he > thinks. > My uric acid was high along with my WBC and Platelets. He seemed to be > more concerned with the high uric acid--even called me on my cell > personally twice; never had that happen before. > He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny > the same thing they did 11 years ago when I was first dx. > He took another blood sample to see if I have a mutation against the > Sprycel. It seems strange that I had a mutation with Gleevec after 5 > years. Is five years a cut off point? Has anyone else have this happen? > Anyone else been on Hydrea after tki? > Going next week to Moffitt to see if I have the mutation. Will let > everyone know. > The leukemia has reared it's ugly head once again!! > Pray for me and everyone in need. > Blessings > Jeanie > (18) > > > In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, > rbhuf...@gmail.com writes: > > WOW! Just read todays posts. I am praying for the group. I will add > my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds > water weight in 20 days after restarting Gleevec. His nurse called that he > was out of the country on vacation with his family. She checked with the > DR. covering for him and he asked me to stop Gleevec as he thought I was > gaining weight too fast also. My ONC did return to the office on Monday > but finally had a conference with his Associate and he agreed with that > decision. They both thought that I should be on a different treatment. My > ONC was to draft an e-mail to the VA ONC (the one controlling my > prescriptions) about my reaction to Gleevec and to recommend the > treatment he thinks I should be on. So I am still in a wait and see > stage. My ONC tells me I am too informed about my condition and that > challenges most blood cancer specialists that rarely see CML. > So let the fun and games continue. I am still feeling great, but the > "Gleevec Brain" was also starting to show itself, but nine days off has > cleared it. I'm as sharp as a busted tack, but that is "normal" for me. > > As always, "life" and may your tomorrow be beautiful and better than today. > > Richard H. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to cml...@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+u...@googlegroups.com . > For more options, visit https://groups.google.com/d/optout. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to cml...@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+u...@googlegroups.com . > For more options, visit https://groups.google.com/d/optout. > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Richard, I am a vet and I would never go to the VA for treatment even for a hang nail, because I have had previous dealings with them. They were recently in the news for everything that they were not doing for most of us vets. When someone has CML or any other major disease then most of the doctors at the VA are not skilled or even trained in this field. I am glad to see that you also have a true oncologist that is taking care of you. And, thank you for serving. 18's, Marty On Thu, Jan 15, 2015 at 12:32 AM, Richard H wrote: > I am my own advocate, I do have two ONCs. One is at a new regional cancer > center and i am completing 12 years of treatment with. The other is with > the VA. They are assigning me underqualified Drs. that should not be > trying to treat me, but only approving the medication prescribed by the > specialist. The VA Doctor has no actual experience in Blood Cancers. I > will start the procedures tomorrow to resolve this. > > Richard H. > > On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: >> >> Hi Richard and Jeanie >> >> I would think that they would want you to be informed. I hope your issues >> resolve soon >> Best wishes Shannon >> >> On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com >> wrote: >>> >>> Hi Richard and thanks for the update. My onc doesn't like for me to >>> be informed either; he just ignores what I say and goes on to tell me what >>> he thinks. >>> My uric acid was high along with my WBC and Platelets. He seemed to be >>> more concerned with the high uric acid--even called me on my cell >>> personally twice; never had that happen before. >>> He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny >>> the same thing they did 11 years ago when I was first dx. >>> He took another blood sample to see if I have a mutation against the >>> Sprycel. It seems strange that I had a mutation with Gleevec after 5 >>> years. Is five years a cut off point? Has anyone else have this happen? >>> Anyone else been on Hydrea after tki? >>> Going next week to Moffitt to see if I have the mutation. Will let >>> everyone know. >>> The leukemia has reared it's ugly head once again!! >>> Pray for me and everyone in need. >>> Blessings >>> Jeanie >>> (18) >>> >>> >>> In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, >>> rbhuf...@gmail.com writes: >>> >>> WOW! Just read todays posts. I am praying for the group. I will add >>> my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds >>> water weight in 20 days after restarting Gleevec. His nurse called that he >>> was out of the country on vacation with his family. She checked with the >>> DR. covering for him and he asked me to stop Gleevec as he thought I was >>> gaining weight too fast also. My ONC did return to the office on Monday >>> but finally had a conference with his Associate and he agreed with that >>> decision. They both thought that I should be on a different treatment. My >>> ONC was to draft an e-mail to the VA ONC (the one controlling my >>> prescriptions) about my reaction to Gleevec and to recommend the >>> treatment he thinks I should be on. So I am still in a wait and see >>> stage. My ONC tells me I am too informed about my condition and that >>> challenges most blood cancer specialists that rarely see CML. >>> So let the fun and games continue. I am still feeling great, but the >>> "Gleevec Brain" was also starting to show itself, but nine days off has >>> cleared it. I'm as sharp as a busted tack, but that is "normal" for me. >>> >>> As always, "life" and may your tomorrow be beautiful and better than >>> today. >>> >>> Richard H. >>> >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> - >>> >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To post to this group, send email to cml...@googlegroups.com >>> To unsubscribe from this group, send email to >>> cmlhope-u...@googlegroups.com >>> For more options, visit this group at http://groups.google.com/ >>> group/CMLHope >>> --- >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To unsubscribe from this group and stop receiving emails from it, send >>> an email to cmlhope+u...@googlegroups.com. >>> For more options, visit https://groups.google.com/d/optout. >>> >>> -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHo
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
I am my own advocate, I do have two ONCs. One is at a new regional cancer center and i am completing 12 years of treatment with. The other is with the VA. They are assigning me underqualified Drs. that should not be trying to treat me, but only approving the medication prescribed by the specialist. The VA Doctor has no actual experience in Blood Cancers. I will start the procedures tomorrow to resolve this. Richard H. On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote: > > Hi Richard and Jeanie > > I would think that they would want you to be informed. I hope your issues > resolve soon > Best wishes Shannon > > On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com wrote: >> >> Hi Richard and thanks for the update. My onc doesn't like for me to be >> informed either; he just ignores what I say and goes on to tell me what he >> thinks. >> My uric acid was high along with my WBC and Platelets. He seemed to be >> more concerned with the high uric acid--even called me on my cell >> personally twice; never had that happen before. >> He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny >> the same thing they did 11 years ago when I was first dx. >> He took another blood sample to see if I have a mutation against the >> Sprycel. It seems strange that I had a mutation with Gleevec after 5 >> years. Is five years a cut off point? Has anyone else have this happen? >> Anyone else been on Hydrea after tki? >> Going next week to Moffitt to see if I have the mutation. Will let >> everyone know. >> The leukemia has reared it's ugly head once again!! >> Pray for me and everyone in need. >> Blessings >> Jeanie >> (18) >> >> >> In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, >> rbhuf...@gmail.com writes: >> >> WOW! Just read todays posts. I am praying for the group. I will add >> my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds >> water weight in 20 days after restarting Gleevec. His nurse called that he >> was out of the country on vacation with his family. She checked with the >> DR. covering for him and he asked me to stop Gleevec as he thought I was >> gaining weight too fast also. My ONC did return to the office on Monday >> but finally had a conference with his Associate and he agreed with that >> decision. They both thought that I should be on a different treatment. My >> ONC was to draft an e-mail to the VA ONC (the one controlling my >> prescriptions) about my reaction to Gleevec and to recommend the >> treatment he thinks I should be on. So I am still in a wait and see >> stage. My ONC tells me I am too informed about my condition and that >> challenges most blood cancer specialists that rarely see CML. >> So let the fun and games continue. I am still feeling great, but the >> "Gleevec Brain" was also starting to show itself, but nine days off has >> cleared it. I'm as sharp as a busted tack, but that is "normal" for me. >> >> As always, "life" and may your tomorrow be beautiful and better than >> today. >> >> Richard H. >> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> - >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to cml...@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-u...@googlegroups.com >> For more options, visit this group at >> http://groups.google.com/group/CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to cmlhope+u...@googlegroups.com. >> For more options, visit https://groups.google.com/d/optout. >> >> -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Richard and Jeanie I would think that they would want you to be informed. I hope your issues resolve soon Best wishes Shannon On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com wrote: > > Hi Richard and thanks for the update. My onc doesn't like for me to be > informed either; he just ignores what I say and goes on to tell me what he > thinks. > My uric acid was high along with my WBC and Platelets. He seemed to be > more concerned with the high uric acid--even called me on my cell > personally twice; never had that happen before. > He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny > the same thing they did 11 years ago when I was first dx. > He took another blood sample to see if I have a mutation against the > Sprycel. It seems strange that I had a mutation with Gleevec after 5 > years. Is five years a cut off point? Has anyone else have this happen? > Anyone else been on Hydrea after tki? > Going next week to Moffitt to see if I have the mutation. Will let > everyone know. > The leukemia has reared it's ugly head once again!! > Pray for me and everyone in need. > Blessings > Jeanie > (18) > > > In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, > rbhuf...@gmail.com writes: > > WOW! Just read todays posts. I am praying for the group. I will add > my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds > water weight in 20 days after restarting Gleevec. His nurse called that he > was out of the country on vacation with his family. She checked with the > DR. covering for him and he asked me to stop Gleevec as he thought I was > gaining weight too fast also. My ONC did return to the office on Monday > but finally had a conference with his Associate and he agreed with that > decision. They both thought that I should be on a different treatment. My > ONC was to draft an e-mail to the VA ONC (the one controlling my > prescriptions) about my reaction to Gleevec and to recommend the > treatment he thinks I should be on. So I am still in a wait and see > stage. My ONC tells me I am too informed about my condition and that > challenges most blood cancer specialists that rarely see CML. > So let the fun and games continue. I am still feeling great, but the > "Gleevec Brain" was also starting to show itself, but nine days off has > cleared it. I'm as sharp as a busted tack, but that is "normal" for me. > > As always, "life" and may your tomorrow be beautiful and better than today. > > Richard H. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to cml...@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+u...@googlegroups.com . > For more options, visit https://groups.google.com/d/optout. > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Jeannie, Please let us know how the test results came out. Thinking of you. Beth -Original Message- From: 'Icandoallttc' via CMLHope To: cmlhope Sent: Sat, Jan 10, 2015 9:45 am Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Thanks Joyce Yes I'm going to have another BMT fri. They will find out what's going on. Staying positive and trusting in The Lord. Blessings Jeanie 18's Sent from my iPhone On Jan 10, 2015, at 1:47 AM, Joyce Mesnarich wrote: Jeanie, So sorry to hear about your set-back. Glad you are going to Moffitt to try to sort things out. Remember that we have several other drugs to use.just have to get over this rough patch. you are in my prayers and thoughts. Joyce in IL Begin forwarded message: From: ICANDOALLTTC via CMLHope Date: January 9, 2015 6:53:38 AM CST To: cmlhope@googlegroups.com Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Reply-To: cmlhope@googlegroups.com Hi Richard and thanks for the update. My onc doesn't like for me to be informed either; he just ignores what I say and goes on to tell me what he thinks. My uric acid was high along with my WBC and Platelets. He seemed to be more concerned with the high uric acid--even called me on my cell personally twice; never had that happen before. He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the same thing they did 11 years ago when I was first dx. He took another blood sample to see if I have a mutation against the Sprycel. It seems strange that I had a mutation with Gleevec after 5 years. Is five years a cut off point? Has anyone else have this happen? Anyone else been on Hydrea after tki? Going next week to Moffitt to see if I have the mutation. Will let everyone know. The leukemia has reared it's ugly head once again!! Pray for me and everyone in need. Blessings Jeanie (18) In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, rbhuffm...@gmail.com writes: WOW! Just read todays posts. I am praying for the group. I will add my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds water weight in 20 days after restarting Gleevec. His nurse called that he was out of the country on vacation with his family. She checked with the DR. covering for him and he asked me to stop Gleevec as he thought I was gaining weight too fast also. My ONC did return to the office on Monday but finally had a conference with his Associate and he agreed with that decision. They both thought that I should be on a different treatment. My ONC was to draft an e-mail to the VA ONC (the one controlling my prescriptions) about my reaction to Gleevec and to recommend the treatment he thinks I should be on. So I am still in a wait and see stage. My ONC tells me I am too informed about my condition and that challenges most blood cancer specialists that rarely see CML. So let the fun and games continue. I am still feeling great, but the "Gleevec Brain" was also starting to show itself, but nine days off has cleared it. I'm as sharp as a busted tack, but that is "normal" for me. As always, "life" and may your tomorrow be beautiful and better than today. Richard H. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com -
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
I'm praying for you Jeanie. Good luck! Multipal 18's Marty On Sat, Jan 10, 2015 at 10:45 AM, 'Icandoallttc' via CMLHope < cmlhope@googlegroups.com> wrote: > Thanks Joyce > Yes I'm going to have another BMT fri. > They will find out what's going on. > Staying positive and trusting in The Lord. > Blessings > Jeanie > 18's [image: 🐟] > > Sent from my iPhone > > On Jan 10, 2015, at 1:47 AM, Joyce Mesnarich wrote: > > Jeanie, > So sorry to hear about your set-back. Glad you are going to Moffitt to > try to sort things out. Remember that we have several other drugs to > use.just have to get over this rough patch. you are in my prayers and > thoughts. > Joyce in IL > > > > Begin forwarded message: > > *From: *ICANDOALLTTC via CMLHope > *Date: *January 9, 2015 6:53:38 AM CST > *To: *cmlhope@googlegroups.com > *Subject: **Re: [CMLHope] My Update anyone had relapse after 5 years on > tkis?* > *Reply-To: *cmlhope@googlegroups.com > > Hi Richard and thanks for the update. My onc doesn't like for me to be > informed either; he just ignores what I say and goes on to tell me what he > thinks. > My uric acid was high along with my WBC and Platelets. He seemed to be > more concerned with the high uric acid--even called me on my cell > personally twice; never had that happen before. > He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny > the same thing they did 11 years ago when I was first dx. > He took another blood sample to see if I have a mutation against the > Sprycel. It seems strange that I had a mutation with Gleevec after 5 > years. Is five years a cut off point? Has anyone else have this happen? > Anyone else been on Hydrea after tki? > Going next week to Moffitt to see if I have the mutation. Will let > everyone know. > The leukemia has reared it's ugly head once again!! > Pray for me and everyone in need. > Blessings > Jeanie > (18) > > > In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, > rbhuffm...@gmail.com writes: > > WOW! Just read todays posts. I am praying for the group. I will add > my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds > water weight in 20 days after restarting Gleevec. His nurse called that he > was out of the country on vacation with his family. She checked with the > DR. covering for him and he asked me to stop Gleevec as he thought I was > gaining weight too fast also. My ONC did return to the office on Monday > but finally had a conference with his Associate and he agreed with that > decision. They both thought that I should be on a different treatment. My > ONC was to draft an e-mail to the VA ONC (the one controlling my > prescriptions) about my reaction to Gleevec and to recommend the > treatment he thinks I should be on. So I am still in a wait and see > stage. My ONC tells me I am too informed about my condition and that > challenges most blood cancer specialists that rarely see CML. > So let the fun and games continue. I am still feeling great, but the > "Gleevec Brain" was also starting to show itself, but nine days off has > cleared it. I'm as sharp as a busted tack, but that is "normal" for me. > > As always, "life" and may your tomorrow be beautiful and better than today. > > Richard H. > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Thanks Joyce Yes I'm going to have another BMT fri. They will find out what's going on. Staying positive and trusting in The Lord. Blessings Jeanie 18's 🐟 Sent from my iPhone > On Jan 10, 2015, at 1:47 AM, Joyce Mesnarich wrote: > > Jeanie, > So sorry to hear about your set-back. Glad you are going to Moffitt to try > to sort things out. Remember that we have several other drugs to > use.just have to get over this rough patch. you are in my prayers and > thoughts. > Joyce in IL > > > > Begin forwarded message: > >> From: ICANDOALLTTC via CMLHope >> Date: January 9, 2015 6:53:38 AM CST >> To: cmlhope@googlegroups.com >> Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? >> Reply-To: cmlhope@googlegroups.com >> >> Hi Richard and thanks for the update. My onc doesn't like for me to be >> informed either; he just ignores what I say and goes on to tell me what he >> thinks. >> My uric acid was high along with my WBC and Platelets. He seemed to be more >> concerned with the high uric acid--even called me on my cell personally >> twice; never had that happen before. >> He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the >> same thing they did 11 years ago when I was first dx. >> He took another blood sample to see if I have a mutation against the >> Sprycel. It seems strange that I had a mutation with Gleevec after 5 years. >> Is five years a cut off point? Has anyone else have this happen? Anyone >> else been on Hydrea after tki? >> Going next week to Moffitt to see if I have the mutation. Will let everyone >> know. >> The leukemia has reared it's ugly head once again!! >> Pray for me and everyone in need. >> Blessings >> Jeanie >> (18) >> >> >> In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, >> rbhuffm...@gmail.com writes: >> WOW! Just read todays posts. I am praying for the group. I will add my >> problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds water >> weight in 20 days after restarting Gleevec. His nurse called that he was >> out of the country on vacation with his family. She checked with the DR. >> covering for him and he asked me to stop Gleevec as he thought I was gaining >> weight too fast also. My ONC did return to the office on Monday but >> finally had a conference with his Associate and he agreed with that >> decision. They both thought that I should be on a different treatment. My >> ONC was to draft an e-mail to the VA ONC (the onecontrolling my >> prescriptions) about my reaction to Gleevec and to recommend the treatment >> he thinks I should be on. So I am still in a wait and see stage. My ONC >> tells me I am too informed about my condition and that challenges most blood >> cancer specialists that rarely see CML. >> So let the fun and games continue. I am still feeling great, but the >> "Gleevec Brain" was also starting to show itself, but nine days off has >> cleared it. I'm as sharp as a busted tack, but that is "normal" for me. >> >> As always, "life" and may your tomorrow be beautiful and better than today. >> >> Richard H. >> >> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> - >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> For more options, visit this group at http://groups.google.com/group/CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to cmlhope+unsubscr...@googlegroups.com. >> For more options, visit https://groups.google.com/d/optout. >> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> - >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> For more options, visit this group at http://gr
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Congratulations on 15 years. I was one that put on 25-30 pounds of water retention in 5 1/2 years. After I stopped Gleevec I lost the 25-30 pounds in less than 90 days. When I went back on Gleevec in December I gained 9.5 pounds in 20 days. Let's not talk about the age thing. I am only 74 1/2 years old and just getting started on my 2nd childhood. I do think my caretaker has the impossible task to complete. ( "HA HA HA" Woody Woodpecker) Richard H. On Friday, January 9, 2015 at 7:11:08 AM UTC-6, greenie wrote: > Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. > Starting to retain fluid around my ankles a little but that could be and > age thing. 75 years old. > > greenie > > In a message dated 1/9/2015 7:53:41 A.M. Eastern Standard Time, > cml...@googlegroups.com writes: > > Hi Richard and thanks for the update. My onc doesn't like for me to be > informed either; he just ignores what I say and goes on to tell me what he > thinks. > My uric acid was high along with my WBC and Platelets. He seemed to be > more concerned with the high uric acid--even called me on my cell > personally twice; never had that happen before. > He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny > the same thing they did 11 years ago when I was first dx. > He took another blood sample to see if I have a mutation against the > Sprycel. It seems strange that I had a mutation with Gleevec after 5 > years. Is five years a cut off point? Has anyone else have this happen? > Anyone else been on Hydrea after tki? > Going next week to Moffitt to see if I have the mutation. Will let > everyone know. > The leukemia has reared it's ugly head once again!! > Pray for me and everyone in need. > Blessings > Jeanie > (18) > > > In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, > rbhuf...@gmail.com writes: > > WOW! Just read todays posts. I am praying for the group. I will add > my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds > water weight in 20 days after restarting Gleevec. His nurse called that he > was out of the country on vacation with his family. She checked with the > DR. covering for him and he asked me to stop Gleevec as he thought I was > gaining weight too fast also. My ONC did return to the office on Monday > but finally had a conference with his Associate and he agreed with that > decision. They both thought that I should be on a different treatment. My > ONC was to draft an e-mail to the VA ONC (the one controlling my > prescriptions) about my reaction to Gleevec and to recommend the > treatment he thinks I should be on. So I am still in a wait and see > stage. My ONC tells me I am too informed about my condition and that > challenges most blood cancer specialists that rarely see CML. > So let the fun and games continue. I am still feeling great, but the > "Gleevec Brain" was also starting to show itself, but nine days off has > cleared it. I'm as sharp as a busted tack, but that is "normal" for me. > > As always, "life" and may your tomorrow be beautiful and better than today. > > Richard H. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to cml...@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+u...@googlegroups.com . > For more options, visit https://groups.google.com/d/optout. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to cml...@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+u...@googlegroups.com . > For more options, visit https://groups.google.com/d/optout. > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Yes, Gleevec started failing me at 4 1/2 years and I stopped treatment at 5 1/2. Richard H. On Friday, January 9, 2015 at 6:53:42 AM UTC-6, icando...@aol.com wrote: > Hi Richard and thanks for the update. My onc doesn't like for me to be > informed either; he just ignores what I say and goes on to tell me what he > thinks. > My uric acid was high along with my WBC and Platelets. He seemed to be > more concerned with the high uric acid--even called me on my cell > personally twice; never had that happen before. > He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny > the same thing they did 11 years ago when I was first dx. > He took another blood sample to see if I have a mutation against the > Sprycel. It seems strange that I had a mutation with Gleevec after 5 > years. Is five years a cut off point? Has anyone else have this happen? > Anyone else been on Hydrea after tki? > Going next week to Moffitt to see if I have the mutation. Will let > everyone know. > The leukemia has reared it's ugly head once again!! > Pray for me and everyone in need. > Blessings > Jeanie > (18) > > > In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, > rbhuf...@gmail.com writes: > > WOW! Just read todays posts. I am praying for the group. I will add > my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds > water weight in 20 days after restarting Gleevec. His nurse called that he > was out of the country on vacation with his family. She checked with the > DR. covering for him and he asked me to stop Gleevec as he thought I was > gaining weight too fast also. My ONC did return to the office on Monday > but finally had a conference with his Associate and he agreed with that > decision. They both thought that I should be on a different treatment. My > ONC was to draft an e-mail to the VA ONC (the one controlling my > prescriptions) about my reaction to Gleevec and to recommend the > treatment he thinks I should be on. So I am still in a wait and see > stage. My ONC tells me I am too informed about my condition and that > challenges most blood cancer specialists that rarely see CML. > So let the fun and games continue. I am still feeling great, but the > "Gleevec Brain" was also starting to show itself, but nine days off has > cleared it. I'm as sharp as a busted tack, but that is "normal" for me. > > As always, "life" and may your tomorrow be beautiful and better than today. > > Richard H. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to cml...@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+u...@googlegroups.com . > For more options, visit https://groups.google.com/d/optout. > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Greenie and thanks. I knew you were one of the successful gleevec patients. So happy for you. Blessings Jeanie Sent from my iPhone > On Jan 9, 2015, at 8:11 AM, Myvety2k via CMLHope > wrote: > > Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. Starting to > retain fluid around my ankles a little but that could be and age thing. 75 > years old. > > greenie > > In a message dated 1/9/2015 7:53:41 A.M. Eastern Standard Time, > cmlhope@googlegroups.com writes: > Hi Richard and thanks for the update. My onc doesn't like for me to be > informed either; he just ignores what I say and goes on to tell me what he > thinks. > My uric acid was high along with my WBC and Platelets. He seemed to be more > concerned with the high uric acid--even called me on my cell personally > twice; never had that happen before. > He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the > same thing they did 11 years ago when I was first dx. > He took another blood sample to see if I have a mutation against the Sprycel. > It seems strange that I had a mutation with Gleevec after 5 years. Is five > years a cut off point? Has anyone else have this happen? Anyone else been on > Hydrea after tki? > Going next week to Moffitt to see if I have the mutation. Will let everyone > know. > The leukemia has reared it's ugly head once again!! > Pray for me and everyone in need. > Blessings > Jeanie > (18) > > > In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, > rbhuffm...@gmail.com writes: > WOW! Just read todays posts. I am praying for the group. I will add my > problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds water > weight in 20 days after restarting Gleevec. His nurse called that he was out > of the country on vacation with his family. She checked with the DR. > covering for him and he asked me to stop Gleevec as he thought I was gaining > weight too fast also. My ONC did return to the office on Monday but finally > had a conference with his Associate and he agreed with that decision. They > both thought that I should be on a different treatment. My ONC was to draft > an e-mail to the VA ONC (the one controlling my prescriptions) about my > reaction to Gleevec and to recommend the treatment he thinks I should be on. > So I am still in a wait and see stage. My ONC tells me I am too informed > about my condition and that challenges most blood cancer specialists that > rarely see CML. > So let the fun and games continue. I am still feeling great, but the > "Gleevec Brain" was also starting to show itself, but nine days off has > cleared it. I'm as sharp as a busted tack, but that is "normal" for me. > > As always, "life" and may your tomorrow be beautiful and better than today. > > Richard H. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. Starting to retain fluid around my ankles a little but that could be and age thing. 75 years old. greenie In a message dated 1/9/2015 7:53:41 A.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Hi Richard and thanks for the update. My onc doesn't like for me to be informed either; he just ignores what I say and goes on to tell me what he thinks. My uric acid was high along with my WBC and Platelets. He seemed to be more concerned with the high uric acid--even called me on my cell personally twice; never had that happen before. He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the same thing they did 11 years ago when I was first dx. He took another blood sample to see if I have a mutation against the Sprycel. It seems strange that I had a mutation with Gleevec after 5 years. Is five years a cut off point? Has anyone else have this happen? Anyone else been on Hydrea after tki? Going next week to Moffitt to see if I have the mutation. Will let everyone know. The leukemia has reared it's ugly head once again!! Pray for me and everyone in need. Blessings Jeanie (18) In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, rbhuffm...@gmail.com writes: WOW! Just read todays posts. I am praying for the group. I will add my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds water weight in 20 days after restarting Gleevec. His nurse called that he was out of the country on vacation with his family. She checked with the DR. covering for him and he asked me to stop Gleevec as he thought I was gaining weight too fast also. My ONC did return to the office on Monday but finally had a conference with his Associate and he agreed with that decision. They both thought that I should be on a different treatment. My ONC was to draft an e-mail to the VA ONC (the one controlling my prescriptions) about my reaction to Gleevec and to recommend the treatment he thinks I should be on. So I am still in a wait and see stage. My ONC tells me I am too informed about my condition and that challenges most blood cancer specialists that rarely see CML. So let the fun and games continue. I am still feeling great, but the "Gleevec Brain" was also starting to show itself, but nine days off has cleared it. I'm as sharp as a busted tack, but that is "normal" for me. As always, "life" and may your tomorrow be beautiful and better than today. Richard H. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Richard and thanks for the update. My onc doesn't like for me to be informed either; he just ignores what I say and goes on to tell me what he thinks. My uric acid was high along with my WBC and Platelets. He seemed to be more concerned with the high uric acid--even called me on my cell personally twice; never had that happen before. He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the same thing they did 11 years ago when I was first dx. He took another blood sample to see if I have a mutation against the Sprycel. It seems strange that I had a mutation with Gleevec after 5 years. Is five years a cut off point? Has anyone else have this happen? Anyone else been on Hydrea after tki? Going next week to Moffitt to see if I have the mutation. Will let everyone know. The leukemia has reared it's ugly head once again!! Pray for me and everyone in need. Blessings Jeanie (18) In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, rbhuffm...@gmail.com writes: WOW! Just read todays posts. I am praying for the group. I will add my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds water weight in 20 days after restarting Gleevec. His nurse called that he was out of the country on vacation with his family. She checked with the DR. covering for him and he asked me to stop Gleevec as he thought I was gaining weight too fast also. My ONC did return to the office on Monday but finally had a conference with his Associate and he agreed with that decision. They both thought that I should be on a different treatment. My ONC was to draft an e-mail to the VA ONC (the one controlling my prescriptions) about my reaction to Gleevec and to recommend the treatment he thinks I should be on. So I am still in a wait and see stage. My ONC tells me I am too informed about my condition and that challenges most blood cancer specialists that rarely see CML. So let the fun and games continue. I am still feeling great, but the "Gleevec Brain" was also starting to show itself, but nine days off has cleared it. I'm as sharp as a busted tack, but that is "normal" for me. As always, "life" and may your tomorrow be beautiful and better than today. Richard H. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
