Re: [CMLHope] Stopping Gleevec
I was on Gleevec for about 6 years and then it stopped working. They moved me to Sprycel and many of the side affects, just as you mentioned, of Gleevec went AWAY. It was a wonderful change. Now after 8 years on Sprycel, they are moving me to Bosulif due to water around my heart and lungs. I enter a new journey but the one on Sprycel was much, much better than Gleevec. On Thu, Jan 25, 2018 at 11:35 AM, Jamie Tufariello wrote: > > > On Saturday, August 5, 2017, Vivi wrote: > >> After seventeen years on Gleevec, and considered "in remission," my >> oncologist asked me if I would like to stop taking Gleevec. >> At first glance, this sounded spectacular but then she said: >> "you'll have to come in once a month to be tested." >> After deep thought (about twenty seconds), I said, "Talk to me about this >> again in ten years." >> Has anyone else stopped taking Gleevec after years of being "in >> remission?" If so, how's it going? >> What has changed in your life? Have any of the obvious physical >> side-effects (leg cramps, blood in the whites of your eyes, swollen eyelids, >> abdominal fat) retreated or been reversed? >> I'd appreciate any information other CMLers might have. >> Best to all. >> >> -- >> -- >> [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-unsubscribe@ > 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] Stopping Gleevec
On Saturday, August 5, 2017, Vivi wrote: > After seventeen years on Gleevec, and considered "in remission," my > oncologist asked me if I would like to stop taking Gleevec. > At first glance, this sounded spectacular but then she said: > "you'll have to come in once a month to be tested." > After deep thought (about twenty seconds), I said, "Talk to me about this > again in ten years." > Has anyone else stopped taking Gleevec after years of being "in > remission?" If so, how's it going? > What has changed in your life? Have any of the obvious physical > side-effects (leg cramps, blood in the whites of your eyes, swollen eyelids, > abdominal fat) retreated or been reversed? > I'd appreciate any information other CMLers might have. > Best to all. > > -- > -- > [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-unsubscribe@ > 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] Stopping Gleevec
Hi all Went to Moffitt today and blood is good. Dr recommending going off meds but I've always gone out of remission without my pills. I have decided to cut back a few days at the time. My playlets were borderline low. I tried to see dr pinila but the appointments got mixed up and my other onc recommended Balducci. So I've been with him for 7 years. I would go for Pinila because he is the head of the leukemia department there. I've paid very little the whole time there. I know it's hard to change but things will work out for you. Good luck. Maybe they could do a story on your journey through Gleevec. I like Moffitt because you don't have to run around for tests-it's right there in the center. It's not just leukemia. They have large departments for other sicknesses right there for you plus the hospital is connected to the department I go to. Don't worry everything will be ok and we are here for you if you need us. Jeanie My Motto: Faith and Pills With Love đ 18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center > On Aug 6, 2017, at 9:15 PM, 'Susan Zimmerman' via CMLHope > wrote: > > Greenie, > > I recommend Moffitt also. You know I go to Dr. Altman becuz I'm up here in > Indiana. But my old doc was Pinilla that Jeanie recommended. They will help u > get your medicine. A lot less expensive to go there!!! > > Blessings, > > Susan F. Zimmerman > > > > On Sunday, August 6, 2017 Myvety2k via CMLHope > wrote: > > Jeanie thank you I wait and see what happens if things don't work out for me > I will go their. > > greenie > > In a message dated 8/6/2017 5:56:57 P.M. Eastern Daylight Time, > cmlhope@googlegroups.com writes: > Hey Greenie, > I would like to suggest Moffitt cancer center here in Tampa. They will do > everything to help you to get your meds. It's where I go and they have saved > my life twice. They accept Medicare and medicate assignment. If you need > help with copayment a there is a cancer copayment company called PSI. They > paid my copayment for several years. You just need to start making calls and > get the ball rolling. However I pray they keep sending the meds. You and I > have been fighting this for years. > I go to dr Balducci head of senior oncology centerin Moffitt but the head > of leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour > ahead of Drs meeting for bloodwork right at hospital and by the time you meet > your dr your blood work is done for him. Every three months they do a PCR. > They have vallet parking. > Praying for you. > Jeanieâ¤ď¸â¤ď¸â¤ď¸â¤ď¸ > > My Motto: > Faith and Pills > With Love > đ 18's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/2015 > Doctor Balducci Moffitt Cancer Center > > On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope > wrote: > > Hi Rien, I started a study the first week in Jan. 2000 at Northwestern > Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They > changed it later to 300 mg because of the Gleevec rash. I got sick in 2009 > and stopped Gleevec for 26 days because of sinus infection and the Doctor at > home put me on an antibiotic which made me sick so I stopped for those 26 > days. > > Then I started up again and had my blood work done at Northwestern and > started on a trip out west. My Cancer Doctor called me while driving and > said," David your blood work showed that their are cancer cells back in your > blood". I told him remember I quit for 26 days and he replied that's right I > forgot, did you start Gleevec again I told him yes and he said " well if it > worked before it will work again and hung up and I never heard from again. I > later received a letter from him that he moved on to a different Hosp. in New > York, NY. and that was the end of that. > > So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to > get my blood work see my new Doctor pick up my drugs and be on my way home. > But instead I was told their no longer a study and you won't be getting the > drug any longer. That took my breath away. Before I left they then told me > that they changed their mind and would give me the drug and 7 month supply > and would sent the rest later because they were short on Gleevec.. > > Last week I received a call telling me that for me to receive the drug that I > would have to fly in every 3 months, that's not going to happen with the cost > of flights, car rental, etc., not with my income at 78 years old. They > called me last week and they are suppose to have a meeting and let me know. > > When I started this study their were 8 of us out of 200 people nation way and > that I would receive the drug STI571 for as long and I could tolerated it or > stay alive. Well that changed. I am waiti
Re: [CMLHope] Stopping Gleevec
Susan, your a sweetheart. greenie In a message dated 8/7/2017 10:48:32 A.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Dear Greenie, I do sympathize with you so much about losing your son. I remember when you had to go to the funeral without your lovely wife. It must have been very hard on her, too. They say grief has no definite time frame. Praying for you. So glad we were able to meet in New Carlisle that time. You helped Roy and I with the shortcut through chicago. Love ya more later Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Monday, August 7, 2017 Myvety2k via CMLHope wrote: Thank you for the info Susan, hope all is well with you. I'm still waiting for a call from them to let me know what they plan to do for me. I'm sure I will here from them within a week or so. I'm hoping for the best after over 17 years in their study. For all you know I may be the last of the 8 that started in the study, I asked one time but they won't tell me. I can make it their ever 6 months but it would be hard for me every 3 months as my blood work here at Quest is free with Humana. The only reason I moved to Florida because they made the change to once a year, Grace and I just could not take the cold weather any more it was very hard on both of us. She had a stroke in Sept. of 2015 and then when Derek passed away June 13 of last year within 10 min. she had a heart attack after we found out. So I went to the funnel by myself. I'm still having a very hard time dealing with him gone their's not a day that goes by that I think about him. Very sad. I still can't look at a picture of him without breaking down as they say time heals all wounds I'll just have to wait. Thanks for the info. greenie In a message dated 8/6/2017 9:15:20 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Greenie, I recommend Moffitt also. You know I go to Dr. Altman becuz I'm up here in Indiana. But my old doc was Pinilla that Jeanie recommended. They will help u get your medicine. A lot less expensive to go there!!! Blessings, Susan F. Zimmerman On Sunday, August 6, 2017 Myvety2k via CMLHope wrote: Jeanie thank you I wait and see what happens if things don't work out for me I will go their. greenie In a message dated 8/6/2017 5:56:57 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Hey Greenie, I would like to suggest Moffitt cancer center here in Tampa. They will do everything to help you to get your meds. It's where I go and they have saved my life twice. They accept Medicare and medicate assignment. If you need help with copayment a there is a cancer copayment company called PSI. They paid my copayment for several years. You just need to start making calls and get the ball rolling. However I pray they keep sending the meds. You and I have been fighting this for years. I go to dr Balducci head of senior oncology center in Moffitt but the head of leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour ahead of Drs meeting for bloodwork right at hospital and by the time you meet your dr your blood work is done for him. Every three months they do a PCR. They have vallet parking. Praying for you. Jeanieâ¤ď¸â¤ď¸â¤ď¸â¤ď¸ My Motto: Faith and Pills With Love đ 18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope wrote: Hi Rien, I started a study the first week in Jan. 2000 at Northwestern Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They changed it later to 300 mg because of the Gleevec rash. I got sick in 2009 and stopped Gleevec for 26 days because of sinus infection and the Doctor at home put me on an antibiotic which made me sick so I stopped for those 26 days. Then I started up again and had my blood work done at Northwestern and started on a trip out west. My Cancer Doctor called me while driving and said," David your blood work showed that their are cancer cells back in your blood". I told him remember I quit for 26 days and he replied that's right I forgot, did you start Gleevec again I told him yes and he said " well if it worked before it will work again and hung up and I never heard from again. I later received a letter from him that he moved on to a different Hosp. in New York, NY. and that was the end of that. So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to get my blood work see my new Doctor pick up my drugs and be on my way home. But instead I was told their no longer a study and you won't be getting the drug any longer. That took my
Re: [CMLHope] Stopping Gleevec
Dear Greenie, I do sympathize with you so much about losing your son. I remember when you had to go to the funeral without your lovely wife. It must have been very hard on her, too. They say grief has no definite time frame. Praying for you. So glad we were able to meet in New Carlisle that time. You helped Roy and I with the shortcut through chicago. Love ya more later Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Monday, August 7, 2017 Myvety2k via CMLHope wrote: Thank you for the info Susan, hope all is well with you. I'm still waiting for a call from them to let me know what they plan to do for me. I'm sure I will here from them within a week or so. I'm hoping for the best after over 17 years in their study. For all you know I may be the last of the 8 that started in the study, I asked one time but they won't tell me. I can make it their ever 6 months but it would be hard for me every 3 months as my blood work here at Quest is free with Humana. The only reason I moved to Florida because they made the change to once a year, Grace and I just could not take the cold weather any more it was very hard on both of us.  She had a stroke in Sept. of 2015 and then when Derek passed away June 13 of last year within 10 min. she had a heart attack after we found out. So I went to the funnel by myself. I'm still having a very hard time dealing with him gone their's not a day that goes by that I think about him. Very sad. I still can't look at a picture of him without breaking down as they say time heals all wounds I'll just have to wait.  Thanks for the info. greenie  In a message dated 8/6/2017 9:15:20 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Greenie, I recommend Moffitt also. You know I go to Dr. Altman becuz I'm up here in Indiana. But my old doc was Pinilla that Jeanie recommended. They will help u get your medicine. A lot less expensive to go there!!! Blessings, Susan F. Zimmerman On Sunday, August 6, 2017 Myvety2k via CMLHope wrote: Jeanie thank you I wait and see what happens if things don't work out for me I will go their.  greenie  In a message dated 8/6/2017 5:56:57 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Hey Greenie, I would like to suggest Moffitt cancer center here in Tampa. They will do everything to help you to get your meds. It's where I go and they have saved my life twice.  They accept Medicare and medicate assignment.  If you need help with copayment a there is a cancer copayment company called PSI. They paid my copayment for several years. You just need to start making calls and get the ball rolling.  However I pray they keep sending the meds. You and I have been fighting this for years. I go to dr Balducci head of senior oncology center in Moffitt but the head of leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour ahead of Drs meeting for bloodwork right at hospital and by the time you meet your dr your blood work is done for him.  Every three months they do a PCR.  They have vallet parking. Praying for you. Jeanieâ¤ď¸â¤ď¸â¤ď¸â¤ď¸ My Motto: Faith and Pills With Love đ 18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope wrote: Hi Rien,  I started a study the first week in Jan. 2000 at Northwestern Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They changed it later to 300 mg because of the Gleevec rash. I got sick in 2009 and stopped Gleevec for 26 days because of sinus infection and the Doctor at home put me on an antibiotic which made me sick so I stopped for those 26 days.  Then I started up again and had my blood work done at Northwestern and started on a trip out west. My Cancer Doctor called me while driving and said," David your blood work showed that their are cancer cells back in your blood". I told him remember I quit for 26 days and he replied that's right I forgot, did you start Gleevec again I told him yes and he said " well if it worked before it will work again and hung up and I never heard from again. I later received a letter from him that he moved on to a different Hosp. in New York, NY. and that was the end of that.  So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to get my blood work see my new Doctor pick up my drugs and be on my way home. But instead I was told their no longer a study and you won't be getting the drug any longer. That took my breath away. Before I left they then told me that they changed their mind and would give me the drug and 7 month supply and would sent the rest later because they were short on Gleevec..  Last week I received a call telling me that for me to receive the drug
Re: [CMLHope] Stopping Gleevec
Thank you for the info Susan, hope all is well with you. I'm still waiting for a call from them to let me know what they plan to do for me. I'm sure I will here from them within a week or so. I'm hoping for the best after over 17 years in their study. For all you know I may be the last of the 8 that started in the study, I asked one time but they won't tell me. I can make it their ever 6 months but it would be hard for me every 3 months as my blood work here at Quest is free with Humana. The only reason I moved to Florida because they made the change to once a year, Grace and I just could not take the cold weather any more it was very hard on both of us. She had a stroke in Sept. of 2015 and then when Derek passed away June 13 of last year within 10 min. she had a heart attack after we found out. So I went to the funnel by myself. I'm still having a very hard time dealing with him gone their's not a day that goes by that I think about him. Very sad. I still can't look at a picture of him without breaking down as they say time heals all wounds I'll just have to wait. Thanks for the info. greenie In a message dated 8/6/2017 9:15:20 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Greenie, I recommend Moffitt also. You know I go to Dr. Altman becuz I'm up here in Indiana. But my old doc was Pinilla that Jeanie recommended. They will help u get your medicine. A lot less expensive to go there!!! Blessings, Susan F. Zimmerman On Sunday, August 6, 2017 Myvety2k via CMLHope wrote: Jeanie thank you I wait and see what happens if things don't work out for me I will go their. greenie In a message dated 8/6/2017 5:56:57 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Hey Greenie, I would like to suggest Moffitt cancer center here in Tampa. They will do everything to help you to get your meds. It's where I go and they have saved my life twice. They accept Medicare and medicate assignment. If you need help with copayment a there is a cancer copayment company called PSI. They paid my copayment for several years. You just need to start making calls and get the ball rolling. However I pray they keep sending the meds. You and I have been fighting this for years. I go to dr Balducci head of senior oncology center in Moffitt but the head of leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour ahead of Drs meeting for bloodwork right at hospital and by the time you meet your dr your blood work is done for him. Every three months they do a PCR. They have vallet parking. Praying for you. Jeanieâ¤ď¸â¤ď¸â¤ď¸â¤ď¸ My Motto: Faith and Pills With Love đ 18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope wrote: Hi Rien, I started a study the first week in Jan. 2000 at Northwestern Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They changed it later to 300 mg because of the Gleevec rash. I got sick in 2009 and stopped Gleevec for 26 days because of sinus infection and the Doctor at home put me on an antibiotic which made me sick so I stopped for those 26 days. Then I started up again and had my blood work done at Northwestern and started on a trip out west. My Cancer Doctor called me while driving and said," David your blood work showed that their are cancer cells back in your blood". I told him remember I quit for 26 days and he replied that's right I forgot, did you start Gleevec again I told him yes and he said " well if it worked before it will work again and hung up and I never heard from again. I later received a letter from him that he moved on to a different Hosp. in New York, NY. and that was the end of that. So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to get my blood work see my new Doctor pick up my drugs and be on my way home. But instead I was told their no longer a study and you won't be getting the drug any longer. That took my breath away. Before I left they then told me that they changed their mind and would give me the drug and 7 month supply and would sent the rest later because they were short on Gleevec.. Last week I received a call telling me that for me to receive the drug that I would have to fly in every 3 months, that's not going to happen with the cost of flights, car rental, etc., not with my income at 78 years old. They called me last week and they are suppose to have a meeting and let me know. When I started this study their were 8 of us out of 200 people nation way and that I would receive the drug STI571 for as long and I could tolerated it or stay alive. Well that changed. I am waiting for a phone call and I'm afraid it's not going to b
Re: [CMLHope] Stopping Gleevec
Greenie, I recommend Moffitt also. You know I go to Dr. Altman becuz I'm up here in Indiana. But my old doc was Pinilla that Jeanie recommended. They will help u get your medicine. A lot less expensive to go there!!! Blessings, Susan F. Zimmerman On Sunday, August 6, 2017 Myvety2k via CMLHope wrote: Jeanie thank you I wait and see what happens if things don't work out for me I will go their.  greenie  In a message dated 8/6/2017 5:56:57 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Hey Greenie, I would like to suggest Moffitt cancer center here in Tampa. They will do everything to help you to get your meds. It's where I go and they have saved my life twice.  They accept Medicare and medicate assignment.  If you need help with copayment a there is a cancer copayment company called PSI. They paid my copayment for several years. You just need to start making calls and get the ball rolling.  However I pray they keep sending the meds. You and I have been fighting this for years. I go to dr Balducci head of senior oncology center in Moffitt but the head of leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour ahead of Drs meeting for bloodwork right at hospital and by the time you meet your dr your blood work is done for him.  Every three months they do a PCR.  They have vallet parking. Praying for you. Jeanieâ¤ď¸â¤ď¸â¤ď¸â¤ď¸ My Motto: Faith and Pills With Love đ 18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope wrote: Hi Rien,  I started a study the first week in Jan. 2000 at Northwestern Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They changed it later to 300 mg because of the Gleevec rash. I got sick in 2009 and stopped Gleevec for 26 days because of sinus infection and the Doctor at home put me on an antibiotic which made me sick so I stopped for those 26 days.  Then I started up again and had my blood work done at Northwestern and started on a trip out west. My Cancer Doctor called me while driving and said," David your blood work showed that their are cancer cells back in your blood". I told him remember I quit for 26 days and he replied that's right I forgot, did you start Gleevec again I told him yes and he said " well if it worked before it will work again and hung up and I never heard from again. I later received a letter from him that he moved on to a different Hosp. in New York, NY. and that was the end of that.  So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to get my blood work see my new Doctor pick up my drugs and be on my way home. But instead I was told their no longer a study and you won't be getting the drug any longer. That took my breath away. Before I left they then told me that they changed their mind and would give me the drug and 7 month supply and would sent the rest later because they were short on Gleevec..  Last week I received a call telling me that for me to receive the drug that I would have to fly in every 3 months, that's not going to happen with the cost of flights, car rental, etc., not with my income at 78 years old. They called me last week and they are suppose to have a meeting and let me know.  When I started this study their were 8 of us out of 200 people nation way and that I would receive the drug STI571 for as long and I could tolerated it or stay alive. Well that changed. I am waiting for a phone call and I'm afraid it's not going to be good news, So, my question is should I take a chance and stop the drug and get blood work in 3 months and see was happens with my blood count? I am a basket case waiting to see what happens.  If you have some answers please let met know.  Thank you,  David (greenie) Greenberg South Fort Myers, Florida    In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time, rien16...@gmail.com writes: Hello! I stopped taking Gleevec after 13 years. I had my checkups every month, but only in the first year. In the second year every two months and from now on every three months for the rest of my life. It seems that everybody reacts in a different way. I myself had more bonecramps after having stopped than while taking Gleevec; but after the first year it gradually went better and now I have these cramps only a few times per year during the night. The swallen eyelids completely disappeared and unfortunately, my face became a lot thinner. Another side-effect: my hair was not grey anymore after havinig stopped, it is still dark, which was not the case before. After all I am glad that I took the decision, the problems of the first year will disappear, so I strongly advise you to do like I did. Feel free to contact me for further information. Greetings from the Netherlands - and
Re: [CMLHope] Stopping Gleevec
Jeanie thank you I wait and see what happens if things don't work out for me I will go their. greenie In a message dated 8/6/2017 5:56:57 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Hey Greenie, I would like to suggest Moffitt cancer center here in Tampa. They will do everything to help you to get your meds. It's where I go and they have saved my life twice. They accept Medicare and medicate assignment. If you need help with copayment a there is a cancer copayment company called PSI. They paid my copayment for several years. You just need to start making calls and get the ball rolling. However I pray they keep sending the meds. You and I have been fighting this for years. I go to dr Balducci head of senior oncology center in Moffitt but the head of leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour ahead of Drs meeting for bloodwork right at hospital and by the time you meet your dr your blood work is done for him. Every three months they do a PCR. They have vallet parking. Praying for you. Jeanieâ¤ď¸â¤ď¸â¤ď¸â¤ď¸ My Motto: Faith and Pills With Love đ 18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope wrote: Hi Rien, I started a study the first week in Jan. 2000 at Northwestern Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They changed it later to 300 mg because of the Gleevec rash. I got sick in 2009 and stopped Gleevec for 26 days because of sinus infection and the Doctor at home put me on an antibiotic which made me sick so I stopped for those 26 days. Then I started up again and had my blood work done at Northwestern and started on a trip out west. My Cancer Doctor called me while driving and said," David your blood work showed that their are cancer cells back in your blood". I told him remember I quit for 26 days and he replied that's right I forgot, did you start Gleevec again I told him yes and he said " well if it worked before it will work again and hung up and I never heard from again. I later received a letter from him that he moved on to a different Hosp. in New York, NY. and that was the end of that. So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to get my blood work see my new Doctor pick up my drugs and be on my way home. But instead I was told their no longer a study and you won't be getting the drug any longer. That took my breath away. Before I left they then told me that they changed their mind and would give me the drug and 7 month supply and would sent the rest later because they were short on Gleevec.. Last week I received a call telling me that for me to receive the drug that I would have to fly in every 3 months, that's not going to happen with the cost of flights, car rental, etc., not with my income at 78 years old. They called me last week and they are suppose to have a meeting and let me know. When I started this study their were 8 of us out of 200 people nation way and that I would receive the drug STI571 for as long and I could tolerated it or stay alive. Well that changed. I am waiting for a phone call and I'm afraid it's not going to be good news, So, my question is should I take a chance and stop the drug and get blood work in 3 months and see was happens with my blood count? I am a basket case waiting to see what happens. If you have some answers please let met know. Thank you, David (greenie) Greenberg South Fort Myers, Florida In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time, rien16...@gmail.com writes: Hello! I stopped taking Gleevec after 13 years. I had my checkups every month, but only in the first year. In the second year every two months and from now on every three months for the rest of my life. It seems that everybody reacts in a different way. I myself had more bonecramps after having stopped than while taking Gleevec; but after the first year it gradually went better and now I have these cramps only a few times per year during the night. The swallen eyelids completely disappeared and unfortunately, my face became a lot thinner. Another side-effect: my hair was not grey anymore after havinig stopped, it is still dark, which was not the case before. After all I am glad that I took the decision, the problems of the first year will disappear, so I strongly advise you to do like I did. Feel free to contact me for further information. Greetings from the Netherlands - and let's be grateful that Gleevec exisits!! Rien 2017-08-05 19:18 GMT+02:00 Vivi : After seventeen years on Gleevec, and considered "in remission," my oncologist asked me if I would like to stop taking Gleevec. At first glance, this sounded spectacular but then she said
Re: [CMLHope] Stopping Gleevec
I mean Medicare assignment. My Motto: Faith and Pills With Love đ 18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center > On Aug 6, 2017, at 5:56 PM, Jeanie wrote: > > Hey Greenie, > I would like to suggest Moffitt cancer center here in Tampa. They will do > everything to help you to get your meds. It's where I go and they have saved > my life twice. They accept Medicare and medicate assignment. If you need > help with copayment a there is a cancer copayment company called PSI. They > paid my copayment for several years. You just need to start making calls and > get the ball rolling. However I pray they keep sending the meds. You and I > have been fighting this for years. > I go to dr Balducci head of senior oncology center in Moffitt but the head of > leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour ahead > of Drs meeting for bloodwork right at hospital and by the time you meet your > dr your blood work is done for him. Every three months they do a PCR. They > have vallet parking. > Praying for you. > Jeanieâ¤ď¸â¤ď¸â¤ď¸â¤ď¸ > > My Motto: > Faith and Pills > With Love > đ 18's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/2015 > Doctor Balducci Moffitt Cancer Center > >> On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope >> wrote: >> >> Hi Rien, I started a study the first week in Jan. 2000 at Northwestern >> Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They >> changed it later to 300 mg because of the Gleevec rash. I got sick in 2009 >> and stopped Gleevec for 26 days because of sinus infection and the Doctor at >> home put me on an antibiotic which made me sick so I stopped for those 26 >> days. >> >> Then I started up again and had my blood work done at Northwestern and >> started on a trip out west. My Cancer Doctor called me while driving and >> said," David your blood work showed that their are cancer cells back in your >> blood". I told him remember I quit for 26 days and he replied that's right >> I forgot, did you start Gleevec again I told him yes and he said " well if >> it worked before it will work again and hung up and I never heard from >> again. I later received a letter from him that he moved on to a different >> Hosp. in New York, NY. and that was the end of that. >> >> So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to >> get my blood work see my new Doctor pick up my drugs and be on my way home. >> But instead I was told their no longer a study and you won't be getting the >> drug any longer. That took my breath away. Before I left they then told me >> that they changed their mind and would give me the drug and 7 month supply >> and would sent the rest later because they were short on Gleevec.. >> >> Last week I received a call telling me that for me to receive the drug that >> I would have to fly in every 3 months, that's not going to happen with the >> cost of flights, car rental, etc., not with my income at 78 years old. They >> called me last week and they are suppose to have a meeting and let me know. >> >> When I started this study their were 8 of us out of 200 people nation way >> and that I would receive the drug STI571 for as long and I could tolerated >> it or stay alive. Well that changed. I am waiting for a phone call and I'm >> afraid it's not going to be good news, So, my question is should I take a >> chance and stop the drug and get blood work in 3 months and see was happens >> with my blood count? I am a basket case waiting to see what happens. >> >> If you have some answers please let met know. >> >> Thank you, >> >> David (greenie) Greenberg >> South Fort Myers, Florida >> >> >> >> In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time, >> rien16...@gmail.com writes: >> Hello! >> >> I stopped taking Gleevec after 13 years. I had my checkups every month, but >> only in the first year. In the second year every two months and from now on >> every three months for the rest of my life. >> It seems that everybody reacts in a different way. I myself had more >> bonecramps after having stopped than while taking Gleevec; but after the >> first year it gradually went better and now I have these cramps only a few >> times per year during the night. The swallen eyelids completely disappeared >> and unfortunately, my face became a lot thinner. Another side-effect: my >> hair was not grey anymore after havinig stopped, it is still dark, which was >> not the case before. After all I am glad that I took the decision, the >> problems of the first year will disappear, so I strongly advise you to do >> like I did. >> Feel free to contact me for further information. >> Greetings from the Netherlands - and let's be grateful that Gleevec
Re: [CMLHope] Stopping Gleevec
Hey Greenie, I would like to suggest Moffitt cancer center here in Tampa. They will do everything to help you to get your meds. It's where I go and they have saved my life twice. They accept Medicare and medicate assignment. If you need help with copayment a there is a cancer copayment company called PSI. They paid my copayment for several years. You just need to start making calls and get the ball rolling. However I pray they keep sending the meds. You and I have been fighting this for years. I go to dr Balducci head of senior oncology center in Moffitt but the head of leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour ahead of Drs meeting for bloodwork right at hospital and by the time you meet your dr your blood work is done for him. Every three months they do a PCR. They have vallet parking. Praying for you. Jeanieâ¤ď¸â¤ď¸â¤ď¸â¤ď¸ My Motto: Faith and Pills With Love đ 18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center > On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope > wrote: > > Hi Rien, I started a study the first week in Jan. 2000 at Northwestern > Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They > changed it later to 300 mg because of the Gleevec rash. I got sick in 2009 > and stopped Gleevec for 26 days because of sinus infection and the Doctor at > home put me on an antibiotic which made me sick so I stopped for those 26 > days. > > Then I started up again and had my blood work done at Northwestern and > started on a trip out west. My Cancer Doctor called me while driving and > said," David your blood work showed that their are cancer cells back in your > blood". I told him remember I quit for 26 days and he replied that's right I > forgot, did you start Gleevec again I told him yes and he said " well if it > worked before it will work again and hung up and I never heard from again. I > later received a letter from him that he moved on to a different Hosp. in New > York, NY. and that was the end of that. > > So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to > get my blood work see my new Doctor pick up my drugs and be on my way home. > But instead I was told their no longer a study and you won't be getting the > drug any longer. That took my breath away. Before I left they then told me > that they changed their mind and would give me the drug and 7 month supply > and would sent the rest later because they were short on Gleevec.. > > Last week I received a call telling me that for me to receive the drug that I > would have to fly in every 3 months, that's not going to happen with the cost > of flights, car rental, etc., not with my income at 78 years old. They > called me last week and they are suppose to have a meeting and let me know. > > When I started this study their were 8 of us out of 200 people nation way and > that I would receive the drug STI571 for as long and I could tolerated it or > stay alive. Well that changed. I am waiting for a phone call and I'm afraid > it's not going to be good news, So, my question is should I take a chance > and stop the drug and get blood work in 3 months and see was happens with my > blood count? I am a basket case waiting to see what happens. > > If you have some answers please let met know. > > Thank you, > > David (greenie) Greenberg > South Fort Myers, Florida > > > > In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time, > rien16...@gmail.com writes: > Hello! > > I stopped taking Gleevec after 13 years. I had my checkups every month, but > only in the first year. In the second year every two months and from now on > every three months for the rest of my life. > It seems that everybody reacts in a different way. I myself had more > bonecramps after having stopped than while taking Gleevec; but after the > first year it gradually went better and now I have these cramps only a few > times per year during the night. The swallen eyelids completely disappeared > and unfortunately, my face became a lot thinner. Another side-effect: my hair > was not grey anymore after havinig stopped, it is still dark, which was not > the case before. After all I am gladthat I took the decision, the > problems of the first year will disappear, so I strongly advise you to do > like I did. > Feel free to contact me for further information. > Greetings from the Netherlands - and let's be grateful that Gleevec exisits!! > > Rien > > 2017-08-05 19:18 GMT+02:00 Vivi : >> After seventeen years on Gleevec, and considered "in remission," my >> oncologist asked me if I would like to stop taking Gleevec. >> At first glance, this sounded spectacular but then she said: >> "you'll have to come in once a month to be tested." >> After deep thought (about twenty seconds), I said, "Talk to me about this >>
Re: [CMLHope] Stopping Gleevec
Rien, I forget to mention that I get my blood here in Florida every 3 months and everything looks good. I have got to Chicago only the first week in June each year.. Thanks, greenie In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time, rien16...@gmail.com writes: Hello! I stopped taking Gleevec after 13 years. I had my checkups every month, but only in the first year. In the second year every two months and from now on every three months for the rest of my life. It seems that everybody reacts in a different way. I myself had more bonecramps after having stopped than while taking Gleevec; but after the first year it gradually went better and now I have these cramps only a few times per year during the night. The swallen eyelids completely disappeared and unfortunately, my face became a lot thinner. Another side-effect: my hair was not grey anymore after havinig stopped, it is still dark, which was not the case before. After all I am glad that I took the decision, the problems of the first year will disappear, so I strongly advise you to do like I did. Feel free to contact me for further information. Greetings from the Netherlands - and let's be grateful that Gleevec exisits!! Rien 2017-08-05 19:18 GMT+02:00 Vivi : After seventeen years on Gleevec, and considered "in remission," my oncologist asked me if I would like to stop taking Gleevec. At first glance, this sounded spectacular but then she said: "you'll have to come in once a month to be tested." After deep thought (about twenty seconds), I said, "Talk to me about this again in ten years." Has anyone else stopped taking Gleevec after years of being "in remission?" If so, how's it going? What has changed in your life? Have any of the obvious physical side-effects (leg cramps, blood in the whites of your eyes, swollen eyelids, abdominal fat) retreated or been reversed? I'd appreciate any information other CMLers might have. Best to all. -- -- [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-unsubscribe@CMLHope-unsubscr For more options, visit this group at _http://groups.google.com/http://groups_ (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@cmlhope+unsubscr. For more options, visit _https://groups.google.com/d/https:_ (https://groups.google.com/d/optout) . -- Dr. Marinus Jonkers Ravenhoflaan 5 NL- 4706 WD Roosendaal Tel. +31 165 8 22128 117 Bd de la 1ère ArmĂŠe, no. 21 F â 83330 Le Beausset TĂŠl. +33 494 06 01 87 email: rien16...@gmail.com -- -- [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+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] Stopping Gleevec
Hi Rien, I started a study the first week in Jan. 2000 at Northwestern Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They changed it later to 300 mg because of the Gleevec rash. I got sick in 2009 and stopped Gleevec for 26 days because of sinus infection and the Doctor at home put me on an antibiotic which made me sick so I stopped for those 26 days. Then I started up again and had my blood work done at Northwestern and started on a trip out west. My Cancer Doctor called me while driving and said," David your blood work showed that their are cancer cells back in your blood". I told him remember I quit for 26 days and he replied that's right I forgot, did you start Gleevec again I told him yes and he said " well if it worked before it will work again and hung up and I never heard from again. I later received a letter from him that he moved on to a different Hosp. in New York, NY. and that was the end of that. So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to get my blood work see my new Doctor pick up my drugs and be on my way home. But instead I was told their no longer a study and you won't be getting the drug any longer. That took my breath away. Before I left they then told me that they changed their mind and would give me the drug and 7 month supply and would sent the rest later because they were short on Gleevec.. Last week I received a call telling me that for me to receive the drug that I would have to fly in every 3 months, that's not going to happen with the cost of flights, car rental, etc., not with my income at 78 years old. They called me last week and they are suppose to have a meeting and let me know. When I started this study their were 8 of us out of 200 people nation way and that I would receive the drug STI571 for as long and I could tolerated it or stay alive. Well that changed. I am waiting for a phone call and I'm afraid it's not going to be good news, So, my question is should I take a chance and stop the drug and get blood work in 3 months and see was happens with my blood count? I am a basket case waiting to see what happens. If you have some answers please let met know. Thank you, David (greenie) Greenberg South Fort Myers, Florida In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time, rien16...@gmail.com writes: Hello! I stopped taking Gleevec after 13 years. I had my checkups every month, but only in the first year. In the second year every two months and from now on every three months for the rest of my life. It seems that everybody reacts in a different way. I myself had more bonecramps after having stopped than while taking Gleevec; but after the first year it gradually went better and now I have these cramps only a few times per year during the night. The swallen eyelids completely disappeared and unfortunately, my face became a lot thinner. Another side-effect: my hair was not grey anymore after havinig stopped, it is still dark, which was not the case before. After all I am glad that I took the decision, the problems of the first year will disappear, so I strongly advise you to do like I did. Feel free to contact me for further information. Greetings from the Netherlands - and let's be grateful that Gleevec exisits!! Rien 2017-08-05 19:18 GMT+02:00 Vivi : After seventeen years on Gleevec, and considered "in remission," my oncologist asked me if I would like to stop taking Gleevec. At first glance, this sounded spectacular but then she said: "you'll have to come in once a month to be tested." After deep thought (about twenty seconds), I said, "Talk to me about this again in ten years." Has anyone else stopped taking Gleevec after years of being "in remission?" If so, how's it going? What has changed in your life? Have any of the obvious physical side-effects (leg cramps, blood in the whites of your eyes, swollen eyelids, abdominal fat) retreated or been reversed? I'd appreciate any information other CMLers might have. Best to all. -- -- [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-unsubscribe@CMLHope-unsubscr For more options, visit this group at _http://groups.google.com/http://groups_ (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@cmlhope+unsubscr. For more options, visit _https://groups.google.com/d/https:_ (https://groups.google.com/d/optout) . -- Dr. Marinus Jonkers
Re: [CMLHope] Stopping Gleevec
Hello! I stopped taking Gleevec after 13 years. I had my checkups every month, but only in the first year. In the second year every two months and from now on every three months for the rest of my life. It seems that everybody reacts in a different way. I myself had more bonecramps after having stopped than while taking Gleevec; but after the first year it gradually went better and now I have these cramps only a few times per year during the night. The swallen eyelids completely disappeared and unfortunately, my face became a lot thinner. Another side-effect: my hair was not grey anymore after havinig stopped, it is still dark, which was not the case before. After all I am glad that I took the decision, the problems of the first year will disappear, so I strongly advise you to do like I did. Feel free to contact me for further information. Greetings from the Netherlands - and let's be grateful that Gleevec exisits!! Rien 2017-08-05 19:18 GMT+02:00 Vivi : > After seventeen years on Gleevec, and considered "in remission," my > oncologist asked me if I would like to stop taking Gleevec. > At first glance, this sounded spectacular but then she said: > "you'll have to come in once a month to be tested." > After deep thought (about twenty seconds), I said, "Talk to me about this > again in ten years." > Has anyone else stopped taking Gleevec after years of being "in > remission?" If so, how's it going? > What has changed in your life? Have any of the obvious physical > side-effects (leg cramps, blood in the whites of your eyes, swollen eyelids, > abdominal fat) retreated or been reversed? > I'd appreciate any information other CMLers might have. > Best to all. > > -- > -- > [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-unsubscribe@ > 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. > -- *Dr. Marinus Jonkers* *Ravenhoflaan 5* *NL- 4706 WD Roosendaal* *Tel. +31 165 8 22128* *117 Bd de la 1ère ArmĂŠe, no. 21* *F â 83330 Le Beausset* *TĂŠl. +33 494 06 01 87* *email: rien16...@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@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] Stopping Gleevec
Hi all. This is Jeanie. I have lost remission 4 times and really sick most of the times. I am on my 4 the and probably las tki , Ponatinib. I get mutants. So far not on Ponatinib. Ive been taking Ponatinib for over 2 years. So far so good but worry every time I get blood work. My doctor says if it ain't broke why fix it. It's just up to you. Good luck and prayers. Jeanie My Motto: Faith and Pills With Love đ 18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center > On Aug 5, 2017, at 1:18 PM, Vivi wrote: > > After seventeen years on Gleevec, and considered "in remission," my > oncologist asked me if I would like to stop taking Gleevec. > At first glance, this sounded spectacular but then she said: > "you'll have to come in once a month to be tested." > After deep thought (about twenty seconds), I said, "Talk to me about this > again in ten years." > Has anyone else stopped taking Gleevec after years of being "in remission?" > If so, how's it going? > What has changed in your life? Have any of the obvious physical side-effects > (leg cramps, blood in the whites of your eyes, swollen eyelids, > abdominal fat) retreated or been reversed? > I'd appreciate any information other CMLers might have. > Best to all. > -- > -- > [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] Stopping Gleevec
Hi After 14 years on Glivec and being in deep remision 5MR i stopped treatment more than 3 years ago. Did monthly PCR for 1 year and now every 2-3 month. Feeling great. No zombi eyes, less cramps and living normal life. Best Giora × ×Š×× ××-iPhone ׊×× âŤ×-5 ××××׳ 2017, ××Š×˘× 20:59, ââ'Holly' via CMLHope â ×ת×/×:⏠> After 12 years on Gleevec(I was in the first trials at Siteman cancer center) > I switched to Tasigna and all of those symptoms you described went away and > I'm still molecularly cancer free. Maybe you should talk to your doctor about > switching meds. Made a world of difference for me. > Diagnosed: 3/2000 > Gleevec: 10/2000 > Remission: 1/2001 > > Sent from my iPhone > >> On Aug 5, 2017, at 12:18 PM, Vivi wrote: >> >> After seventeen years on Gleevec, and considered "in remission," my >> oncologist asked me if I would like to stop taking Gleevec. >> At first glance, this sounded spectacular but then she said: >> "you'll have to come in once a month to be tested." >> After deep thought (about twenty seconds), I said, "Talk to me about this >> again in ten years." >> Has anyone else stopped taking Gleevec after years of being "in remission?" >> If so, how's it going? >> What has changed in your life? Have any of the obvious physical >> side-effects (leg cramps, blood in the whites of your eyes, swollen eyelids, >> abdominal fat) retreated or been reversed? >> I'd appreciate any information other CMLers might have. >> Best to all. >> -- >> -- >> [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. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Stopping Gleevec
After 12 years on Gleevec(I was in the first trials at Siteman cancer center) I switched to Tasigna and all of those symptoms you described went away and I'm still molecularly cancer free. Maybe you should talk to your doctor about switching meds. Made a world of difference for me. Diagnosed: 3/2000 Gleevec: 10/2000 Remission: 1/2001 Sent from my iPhone > On Aug 5, 2017, at 12:18 PM, Vivi wrote: > > After seventeen years on Gleevec, and considered "in remission," my > oncologist asked me if I would like to stop taking Gleevec. > At first glance, this sounded spectacular but then she said: > "you'll have to come in once a month to be tested." > After deep thought (about twenty seconds), I said, "Talk to me about this > again in ten years." > Has anyone else stopped taking Gleevec after years of being "in remission?" > If so, how's it going? > What has changed in your life? Have any of the obvious physical side-effects > (leg cramps, blood in the whites of your eyes, swollen eyelids, > abdominal fat) retreated or been reversed? > I'd appreciate any information other CMLers might have. > Best to all. > -- > -- > [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] Stopping Gleevec and BMB X4 !
I hear you loud and clear Greenie. My first day at Navy boot camp was on 2 hours was get in line, eat breakfast, THEN ALL THE SHOTS, dentist etc. As I stepped to the dentist table I tried to pass out, but no--they waved something under my nose and kept me awake and just pushed me on down the line. Later we were issued our piece(gun) and had to do exercises. Then I could feel those sore arms. Richard H. On Tuesday, August 11, 2015 at 4:33:01 PM UTC-5, greenie wrote: > Hi my CML friends and care takers, just want to add to the BMB's that > when I received my first one was two weeks before Xmas that was 1998. If I > were to count all of them their would be around 27 to 28 of them. Now that > they use all blood to get the results that makes me a happy camper. Blood > tests I can't begin to keep count and their was a time I couldn't stand to > get one, I remember you had to get one to get married almost kept me from > doing that. > > I was on active duty with the Navy for over a year before they caught up > to me and I received all of my shoots at one time, two very sore arms from > that. > > greenie > > In a message dated 8/11/2015 5:20:55 P.M. Eastern Daylight Time, > cml...@googlegroups.com writes: > > So sorry you had to go through that. It hurts!!! > I had one without any pain killer when I was first dx. It was in the > doctors office in my first visit. > My next BMA was in a hospital under sedation and my others ones were too. > The ones done at Moffitt cancer center were the best. No hip pain later. > Marty you are so right about mind set because we are all getting push back > and forward > My recent blood test was not good and it made me sad. I had been doing so > well on ponatinib. > My WBC were up 2 points 12 but what worried me most were my Kidney > counts. My PCD said I had chronic kidney disease but I have never had > those high counts before. It must be the new tki. > So I must just hang in until my next test in sept. > Blessings all > > My Motto: Faith and Pills > Jeanie đđ18,s > Dx 1/2004. CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib January 2015 > Dr Balducci Moffitt Cancer Center > > On Aug 10, 2015, at 4:10 PM, Marty Gartenberg > wrote: > > Hi Angie, > > In my long list of my bucket list I have gone through seventeen bone > marrow "gathering" expeditions, BMB's or MBA's, to many to count so why not > take your pick? > > But is each one of them they hurt but I had a name for them, A.R.P.I.T.A. > (A real pain in the Azz) and so it was in the early days of the > A.R.P.I.T.A. But I got through it. By the way there was nothing about > having any pain killers only the four syringes of 2% lidocaine, which did > nothing. At least they only lasted for several seconds. > > I think that the longest amount of these needles were probably around 30 > or more. And that is still a close friend of mine Skip. Oh by the way he > has gone through I think about 30 years or more of CML without even taking > and TKI's or any bone marrow transplants. I believe we are looking for > a Guiness world book of records. > > 18's > > Marty > > On Wed, Jun 17, 2015 at 8:35 AM, ANGELYN ESDERS > wrote: > > Thanks, Marty. I am having no great emotional upheaval over quitting > Gleevec. Whatever will be, will be, and everything is a learning > experience. It just feels strange after 14+ years. > > In other news, Monday a new platelet dr. decided to do a BMB. > You won't believe this: It took him FOUR tries to get a viable sample. > Never had this happen before. Four crunching entries. > Sort of like having four BMB's at the same time. Afterwards I was almost > in a state of shock and could not stand, nauseous, very stressed. (In > Canada we do not get sedation or morphine for this procedure.) It took me > 90 minutes to de-stress and had to drive myself home because he had not > warned me that he intended to do this and to bring a driver along. There's > one doctor who will NOT be doing another BMB on me!! I think he needs a few > more lessons in how to do it. > > Anyway, I am finestill low platelets. Life goes on. > Angie > > > -- > *From:* Marty Gartenberg > > *To:* cml...@googlegroups.com > *Sent:* Wednesday, June 17, 2015 7:29 AM > *Subject:* Re: [CMLHope] Stopping Gleevec > > Hi Angie, > > You are not thee only one that has stopped your TKI and felt that way. > sometimes something that we take as far as any TKI's ends up being a crutch > for us and we always seem to
Re: [CMLHope] Stopping Gleevec and BMB X4 !
I meant I had a Bma in jan. They put me to sleep so I don't mind it. My Motto: Faith and Pills Jeanie đđ18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center > On Aug 11, 2015, at 6:01 PM, "'Icandoallttc' via CMLHope" > wrote: > > Hi Greenie and good to hear from you. > That's a lot of tests. > I think Moffitt depends on the PCR test. I had one in jan. > I only had 2 with my first onc and I was with him for 5 years. > My onc at Moffitt will probably want another one soon. > > My Motto: Faith and Pills > Jeanie đđ18,s > Dx 1/2004. CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib January 2015 > Dr Balducci Moffitt Cancer Center > >> On Aug 11, 2015, at 5:32 PM, Myvety2k via CMLHope >> wrote: >> >> Hi my CML friends and care takers, just want to add to the BMB's that when >> I received my first one was two weeks before Xmas that was 1998. If I were >> to count all of them their would be around 27 to 28 of them. Now that they >> use all blood to get the results that makes me a happy camper. Blood tests >> I can't begin to keep count and their was a time I couldn't stand to get >> one, I remember you had to get one to get married almost kept me from doing >> that. >> >> I was on active duty with the Navy for over a year before they caught up to >> me and I received all of my shoots at one time, two very sore arms from that. >> >> greenie >> >> In a message dated 8/11/2015 5:20:55 P.M. Eastern Daylight Time, >> cmlhope@googlegroups.com writes: >> So sorry you had to go through that. It hurts!!! >> I had one without any pain killer when I was first dx. It was in the >> doctors office in my first visit. >> My next BMA was in a hospital under sedation and my others ones were too. >> The ones done at Moffitt cancer center were the best. No hip pain later. >> Marty you are so right about mind set because we are all getting push back >> and forward >> My recent blood test was not good and it made me sad. I had been doing so >> well on ponatinib. >> My WBC were up 2 points 12 but what worried me most were my Kidney counts. >> My PCD said I had chronic kidney disease but I have never had those high >> counts before. It must be the new tki. >> So I must just hang in until my next test in sept. >> Blessings all >> >> My Motto: Faith and Pills >> Jeanie đđ18,s >> Dx 1/2004. CML Leukemia >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib January 2015 >> Dr Balducci Moffitt Cancer Center >> >>> On Aug 10, 2015, at 4:10 PM, Marty Gartenberg wrote: >>> >>> Hi Angie, >>> >>> In my long list of my bucket list I have gone through seventeen bone >>> marrow "gathering" expeditions, BMB's or MBA's, to many to count so why not >>> take your pick? >>> >>> But is each one of them they hurt but I had a name for them, A.R.P.I.T.A. >>> (A real pain in the Azz) and so it was in the early days of the >>> A.R.P.I.T.A. But I got through it. By the way there was nothing about >>> having any pain killers only the four syringes of 2% lidocaine, which did >>> nothing. At least they only lasted for several seconds. >>> >>> I think that the longest amount of these needles were probably around 30 or >>> more. And that is still a close friend of mine Skip. Oh by the way he has >>> gone through I think about 30 years or more of CML without even taking and >>> TKI's or any bone marrow transplants. I believe we are looking for a >>> Guiness world book of records. >>> >>> 18's >>> >>> Marty >>> >>>> On Wed, Jun 17, 2015 at 8:35 AM, ANGELYN ESDERS wrote: >>>> Thanks, Marty. I am having no great emotional upheaval over quitting >>>> Gleevec. Whatever will be, will be, and everything is a learning >>>> experience. It just feels strange after 14+ years. >>>> >>>> In other news, Monday a new platelet dr. decided to do a BMB. >>>> You won't believe this: It took him FOUR tries to get a viable sample. >>>> Never had this happen before. Four crunching entries. >>>> Sort of like having four BMB's at the same time. Afterwards I was almost
Re: [CMLHope] Stopping Gleevec and BMB X4 !
Hi Greenie and good to hear from you. That's a lot of tests. I think Moffitt depends on the PCR test. I had one in jan. I only had 2 with my first onc and I was with him for 5 years. My onc at Moffitt will probably want another one soon. My Motto: Faith and Pills Jeanie đđ18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center > On Aug 11, 2015, at 5:32 PM, Myvety2k via CMLHope > wrote: > > Hi my CML friends and care takers, just want to add to the BMB's that when I > received my first one was two weeks before Xmas that was 1998. If I were to > count all of them their would be around 27 to 28 of them. Now that they use > all blood to get the results that makes me a happy camper. Blood tests I > can't begin to keep count and their was a time I couldn't stand to get one, I > remember you had to get one to get married almost kept me from doing that. > > I was on active duty with the Navy for over a year before they caught up to > me and I received all of my shoots at one time, two very sore arms from that. > > greenie > > In a message dated 8/11/2015 5:20:55 P.M. Eastern Daylight Time, > cmlhope@googlegroups.com writes: > So sorry you had to go through that. It hurts!!! > I had one without any pain killer when I was first dx. It was in the doctors > office in my first visit. > My next BMA was in a hospital under sedation and my others ones were too. > The ones done at Moffitt cancer center were the best. No hip pain later. > Marty you are so right about mind set because we are all getting push back > and forward > My recent blood test was not good and it made me sad. I had been doing so > well on ponatinib. > My WBC were up 2 points 12 but what worried me most were my Kidney counts. > My PCD said I had chronic kidney disease but I have never had those high > counts before. It must be the new tki. > So I must just hang in until my next test in sept. > Blessings all > > My Motto: Faith and Pills > Jeanie đđ18,s > Dx 1/2004. CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib January 2015 > Dr Balducci Moffitt Cancer Center > >> On Aug 10, 2015, at 4:10 PM, Marty Gartenberg wrote: >> >> Hi Angie, >> >> In my long list of my bucket list I have gone through seventeen bone marrow >> "gathering" expeditions, BMB's or MBA's, to many to count so why not take >> your pick? >> >> But is each one of them they hurt but I had a name for them, A.R.P.I.T.A. >> (A real pain in the Azz) and so it was in the early days of the A.R.P.I.T.A. >> But I got through it. By the way there was nothing about having any pain >> killers only the four syringes of 2% lidocaine, which did nothing. At least >> they only lasted for several seconds. >> >> I think that the longest amount of these needles were probably around 30 or >> more. And that is still a close friend of mine Skip. Oh by the way he >> has gone through I think about 30 years or more of CML without even taking >> and TKI's or any bone marrow transplants. I believe we are looking for a >> Guiness world book of records. >> >> 18's >> >> Marty >> >>> On Wed, Jun 17, 2015 at 8:35 AM, ANGELYN ESDERS wrote: >>> Thanks, Marty. I am having no great emotional upheaval over quitting >>> Gleevec. Whatever will be, will be, and everything is a learning >>> experience. It just feels strange after 14+ years. >>> >>> In other news, Monday a new platelet dr. decided to do a BMB. >>> You won't believe this: It took him FOUR tries to get a viable sample. >>> Never had this happen before. Four crunching entries. >>> Sort of like having four BMB's at the same time. Afterwards I was almost in >>> a state of shock and could not stand, nauseous, very stressed. (In Canada >>> we do not get sedation or morphine for this procedure.) It took me 90 >>> minutes to de-stress and had to drive myself home because he had not warned >>> me that he intended to do this and to bring a driver along. There's one >>> doctor who will NOT be doing another BMB on me!! I think he needs a few >>> more lessons in how to do it. >>> >>> Anyway, I am finestill low platelets. Life goes on. >>> Angie >>> >>> >>> From: Marty Gartenberg >>> To: cmlhope@googlegroups.com >>> Sent: Wednesday, June 17, 2015 7:29 AM >>> S
Re: [CMLHope] Stopping Gleevec and BMB X4 !
Hi my CML friends and care takers, just want to add to the BMB's that when I received my first one was two weeks before Xmas that was 1998. If I were to count all of them their would be around 27 to 28 of them. Now that they use all blood to get the results that makes me a happy camper. Blood tests I can't begin to keep count and their was a time I couldn't stand to get one, I remember you had to get one to get married almost kept me from doing that. I was on active duty with the Navy for over a year before they caught up to me and I received all of my shoots at one time, two very sore arms from that. greenie In a message dated 8/11/2015 5:20:55 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: So sorry you had to go through that. It hurts!!! I had one without any pain killer when I was first dx. It was in the doctors office in my first visit. My next BMA was in a hospital under sedation and my others ones were too. The ones done at Moffitt cancer center were the best. No hip pain later. Marty you are so right about mind set because we are all getting push back and forward My recent blood test was not good and it made me sad. I had been doing so well on ponatinib. My WBC were up 2 points 12 but what worried me most were my Kidney counts. My PCD said I had chronic kidney disease but I have never had those high counts before. It must be the new tki. So I must just hang in until my next test in sept. Blessings all My Motto: Faith and Pills Jeanie đđ18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On Aug 10, 2015, at 4:10 PM, Marty Gartenberg <_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) > wrote: Hi Angie, In my long list of my bucket list I have gone through seventeen bone marrow "gathering" expeditions, BMB's or MBA's, to many to count so why not take your pick? But is each one of them they hurt but I had a name for them, A.R.P.I.T.A. (A real pain in the Azz) and so it was in the early days of the A.R.P.I.T.A. But I got through it. By the way there was nothing about having any pain killers only the four syringes of 2% lidocaine, which did nothing. At least they only lasted for several seconds. I think that the longest amount of these needles were probably around 30 or more. And that is still a close friend of mine Skip. Oh by the way he has gone through I think about 30 years or more of CML without even taking and TKI's or any bone marrow transplants. I believe we are looking for a Guiness world book of records. 18's Marty On Wed, Jun 17, 2015 at 8:35 AM, ANGELYN ESDERS <_esders@rogers.com_ (mailto:esd...@rogers.com) > wrote: Thanks, Marty. I am having no great emotional upheaval over quitting Gleevec. Whatever will be, will be, and everything is a learning experience. It just feels strange after 14+ years. In other news, Monday a new platelet dr. decided to do a BMB. You won't believe this: It took him FOUR tries to get a viable sample. Never had this happen before. Four crunching entries. Sort of like having four BMB's at the same time. Afterwards I was almost in a state of shock and could not stand, nauseous, very stressed. (In Canada we do not get sedation or morphine for this procedure.) It took me 90 minutes to de-stress and had to drive myself home because he had not warned me that he intended to do this and to bring a driver along. There's one doctor who will NOT be doing another BMB on me!! I think he needs a few more lessons in how to do it. Anyway, I am finestill low platelets. Life goes on. Angie From: Marty Gartenberg <_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) > To: _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) Sent: Wednesday, June 17, 2015 7:29 AM Subject: Re: [CMLHope] Stopping Gleevec Hi Angie, You are not thee only one that has stopped your TKI and felt that way. sometimes something that we take as far as any TKI's ends up being a crutch for us and we always seem to worry if this or that will come back to haunt us. It is a normal human response and we worry about it. Angie, since your really feeling better without the Gleevec then you should learn to live your life in the best way that you can. I have seen this many times before. A man that both Zavie and I knew was on Alpha Interferon and suffered immensely from it's horrible side effects. He suffered for many years and when he was finally PCRU everyone told him to stop using it anymore but he still continued still suffering because it had become a crutch for him. He had the same feelings as you now have and after a lot of coaching from everyone he finally stopped it.
Re: [CMLHope] Stopping Gleevec and BMB X4 !
So sorry you had to go through that. It hurts!!! I had one without any pain killer when I was first dx. It was in the doctors office in my first visit. My next BMA was in a hospital under sedation and my others ones were too. The ones done at Moffitt cancer center were the best. No hip pain later. Marty you are so right about mind set because we are all getting push back and forward My recent blood test was not good and it made me sad. I had been doing so well on ponatinib. My WBC were up 2 points 12 but what worried me most were my Kidney counts. My PCD said I had chronic kidney disease but I have never had those high counts before. It must be the new tki. So I must just hang in until my next test in sept. Blessings all My Motto: Faith and Pills Jeanie đđ18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center > On Aug 10, 2015, at 4:10 PM, Marty Gartenberg wrote: > > Hi Angie, > > In my long list of my bucket list I have gone through seventeen bone marrow > "gathering" expeditions, BMB's or MBA's, to many to count so why not take > your pick? > > But is each one of them they hurt but I had a name for them, A.R.P.I.T.A. > (A real pain in the Azz) and so it was in the early days of the A.R.P.I.T.A. > But I got through it. By the way there was nothing about having any pain > killers only the four syringes of 2% lidocaine, which did nothing. At least > they only lasted for several seconds. > > I think that the longest amount of these needles were probably around 30 or > more. And that is still a close friend of mine Skip. Oh by the way he has > gone through I think about 30 years or more of CML without even taking and > TKI's or any bone marrow transplants. I believe we are looking for a Guiness > world book of records. > > 18's > > Marty > >> On Wed, Jun 17, 2015 at 8:35 AM, ANGELYN ESDERS wrote: >> Thanks, Marty. I am having no great emotional upheaval over quitting >> Gleevec. Whatever will be, will be, and everything is a learning experience. >> It just feels strange after 14+ years. >> >> In other news, Monday a new platelet dr. decided to do a BMB. >> You won't believe this: It took him FOUR tries to get a viable sample. Never >> had this happen before. Four crunching entries. >> Sort of like having four BMB's at the same time. Afterwards I was almost in >> a state of shock and could not stand, nauseous, very stressed. (In Canada we >> do not get sedation or morphine for this procedure.) It took me 90 minutes >> to de-stress and had to drive myself home because he had not warned me that >> he intended to do this and to bring a driver along. There's one doctor who >> will NOT be doing another BMB on me!! I think he needs a few more lessons in >> how to do it. >> >> Anyway, I am finestill low platelets. Life goes on. >> Angie >> >> >> From: Marty Gartenberg >> To: cmlhope@googlegroups.com >> Sent: Wednesday, June 17, 2015 7:29 AM >> Subject: Re: [CMLHope] Stopping Gleevec >> >> Hi Angie, >> >> You are not thee only one that has stopped your TKI and felt that way. >> sometimes something that we take as far as any TKI's ends up being a crutch >> for us and we always seem to worry if this or that will come back to haunt >> us. It is a normal human response and we worry about it. >> >> Angie, since your really feeling better without the Gleevec then you should >> learn to live your life in the best way that you can. >> >> I have seen this many times before. A man that both Zavie and I knew was on >> Alpha Interferon and suffered immensely from it's horrible side effects. He >> suffered for many years and when he was finally PCRU everyone told him to >> stop using it anymore but he still continued still suffering because it had >> become a crutch for him. He had the same feelings as you now have and after >> a lot of coaching from everyone he finally stopped it. >> >> He has been off of it for many years and no reoccurrence of CML ever came >> back to him. His system finally "burned out" his CML. >> >> Remember that everything in life has a double edged soared. If you do >> something will it come back to haunt you or if you don't do something will >> it come back to haunt you?? >> >> I just can't live my life that way, and if something does come back then I >> will deal with it. >> Remember me telling everyone that Leukemia is both a disease of not only
Re: [CMLHope] Stopping Gleevec and BMB X4 !
Hi Angie, In my long list of my bucket list I have gone through seventeen bone marrow "gathering" expeditions, BMB's or MBA's, to many to count so why not take your pick? But is each one of them they hurt but I had a name for them, A.R.P.I.T.A. (A real pain in the Azz) and so it was in the early days of the A.R.P.I.T.A. But I got through it. By the way there was nothing about having any pain killers only the four syringes of 2% lidocaine, which did nothing. At least they only lasted for several seconds. I think that the longest amount of these needles were probably around 30 or more. And that is still a close friend of mine Skip. Oh by the way he has gone through I think about 30 years or more of CML without even taking and TKI's or any bone marrow transplants. I believe we are looking for a Guiness world book of records. 18's Marty On Wed, Jun 17, 2015 at 8:35 AM, ANGELYN ESDERS wrote: > Thanks, Marty. I am having no great emotional upheaval over quitting > Gleevec. Whatever will be, will be, and everything is a learning > experience. It just feels strange after 14+ years. > > In other news, Monday a new platelet dr. decided to do a BMB. > You won't believe this: It took him FOUR tries to get a viable sample. > Never had this happen before. Four crunching entries. > Sort of like having four BMB's at the same time. Afterwards I was almost > in a state of shock and could not stand, nauseous, very stressed. (In > Canada we do not get sedation or morphine for this procedure.) It took me > 90 minutes to de-stress and had to drive myself home because he had not > warned me that he intended to do this and to bring a driver along. There's > one doctor who will NOT be doing another BMB on me!! I think he needs a few > more lessons in how to do it. > > Anyway, I am finestill low platelets. Life goes on. > Angie > > > -- > *From:* Marty Gartenberg > *To:* cmlhope@googlegroups.com > *Sent:* Wednesday, June 17, 2015 7:29 AM > *Subject:* Re: [CMLHope] Stopping Gleevec > > Hi Angie, > > You are not thee only one that has stopped your TKI and felt that way. > sometimes something that we take as far as any TKI's ends up being a crutch > for us and we always seem to worry if this or that will come back to haunt > us. It is a normal human response and we worry about it. > > Angie, since your really feeling better without the Gleevec then you > should learn to live your life in the best way that you can. > > I have seen this many times before. A man that both Zavie and I knew was > on Alpha Interferon and suffered immensely from it's horrible side effects. > He suffered for many years and when he was finally PCRU everyone told him > to stop using it anymore but he still continued still suffering because it > had become a crutch for him. He had the same feelings as you now have and > after a lot of coaching from everyone he finally stopped it. > > He has been off of it for many years and no reoccurrence of CML ever came > back to him. His system finally "burned out" his CML. > > Remember that everything in life has a double edged soared. If you do > something will it come back to haunt you or if you don't do something will > it come back to haunt you?? > > I just can't live my life that way, and if something does come back then I > will deal with it. > Remember me telling everyone that Leukemia is both a disease of not only > the body but it also poisons the mind. > > Angie, why not start writing a diary and put everything in there that you > have gone through the day? I do it and it lets me reflect about what I > could have done better or worse during the day. I call it my frustrations > and how to deal with them, and it really works for me as I am sure it will > also work for you or anyone else. By the way I see that Giora sent you his > response. read it if you haven't as yet. > > Here is something called "expect the best" Please read it and it will also > help you with yourself. > > One last thing. I am not a doctor but have gone through a lot of things in > my life health wise as you already know. Have you ever wondered why I am > still alive? I did at one time but maybe it is because I try helping others > as a promise that I once made to GOD and also received help myself from > others. It is a two way street, or I am the luckiest son of a bitch on this > planet ??? > 18's, > > Marty > > > *EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF > CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN > YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET > (MIND OVER MATTER) IF YOU EXPECT THE
Re: [CMLHope] Stopping Gleevec and BMB X4 !
Great video Marty. Thanks My Motto: Faith and Pills Jeanie đđ18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center > On Aug 10, 2015, at 10:24 AM, Marty Gartenberg wrote: > > Dear Angie, and everyone else for that matter. > > Please don't ever be disappointed in whatever your problems may be. I have > said this time and time again, and you know what? Just look at what happened > to me. > > Now I don't profess to be a man of "9 lives" but only to be a human being > that has been through a great deal but I just take everything in stride one > day at a time and have been doing this until now for the past 71 years. > > And I guess that I must know what I am talking about, or hopefully I do? Of > course not since I was a child, but the was the time for having fun and > growing up, and to see what everyone around me was teaching me. > > You know what, things haven't really changed that much because life is a > learning experience > > I have seen many things in my life, but there is and has been something in my > life as of age 45 years old/young? And that is I just know that there WILL be > a cure for Leukemia!!! You just have to sit down and keep this in your minds. > > I would like you to see something that "tugs" at me heart strings and > basically has little to do with Leukemia but has a lot of things to do with > two events that I had to do through in my life, and after these I sill am > living proof that so far I have survived. And by the way so far. so have you. > > This video has brought some tears as well as some joy to myself. It just > shows what one human can do for each other, and then for good luck add in a > dog. Yes GOD has a way of sorting in a dog, if you so should spell dog > backwards it comes up with GOD. I always wondered about that. > > www.youtube.com/watch?v=mz2kDH0MCn4 > > 18's, > > Marty > > > > >> On Wed, Jun 17, 2015 at 11:48 AM, 'Icandoallttc' via CMLHope >> wrote: >> Not every one gets to pcr on tkis. I never did on gleevec. It quit on me >> instead of me quitting. >> I finally reached pcr on sprycel. If you do quit keep a close check on >> your counts. >> Remember there are more tkis you can take if you have problems on down the >> line. >> I am now on the newest one out. >> Live each day for that day and enjoy it to its fullest. I have been taking >> tkis for 11 years as of last January and I'm still here. >> >> >> Prayers & Blessings Jeanie đđ18,s >> Dx 1/2004 >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib January 2015 >> Dr Balducci Moffitt Cancer Center >> >>> On Jun 17, 2015, at 8:35 AM, ANGELYN ESDERS wrote: >>> >>> Thanks, Marty. I am having no great emotional upheaval over quitting >>> Gleevec. Whatever will be, will be, and everything is a learning >>> experience. It just feels strange after 14+ years. >>> >>> In other news, Monday a new platelet dr. decided to do a BMB. >>> You won't believe this: It took him FOUR tries to get a viable sample. >>> Never had this happen before. Four crunching entries. >>> Sort of like having four BMB's at the same time. Afterwards I was almost in >>> a state of shock and could not stand, nauseous, very stressed. (In Canada >>> we do not get sedation or morphine for this procedure.) It took me 90 >>> minutes to de-stress and had to drive myself home because he had not warned >>> me that he intended to do this and to bring a driver along. There's one >>> doctor who will NOT be doing another BMB on me!! I think he needs a few >>> more lessons in how to do it. >>> >>> Anyway, I am finestill low platelets. Life goes on. >>> Angie >>> >>> >>> From: Marty Gartenberg >>> To: cmlhope@googlegroups.com >>> Sent: Wednesday, June 17, 2015 7:29 AM >>> Subject: Re: [CMLHope] Stopping Gleevec >>> >>> Hi Angie, >>> >>> You are not thee only one that has stopped your TKI and felt that way. >>> sometimes something that we take as far as any TKI's ends up being a crutch >>> for us and we always seem to worry if this or that will come back to haunt >>> us. It is a normal human response and we worry about it. >>> >>> Angie, since your really feeling better without the Gleeve
Re: [CMLHope] Stopping Gleevec and BMB X4 !
Dear Angie, and everyone else for that matter. Please don't ever be disappointed in whatever your problems may be. I have said this time and time again, and you know what? Just look at what happened to me. Now I don't profess to be a man of "9 lives" but only to be a human being that has been through a great deal but I just take everything in stride one day at a time and have been doing this until now for the past 71 years. And I guess that I must know what I am talking about, or hopefully I do? Of course not since I was a child, but the was the time for having fun and growing up, and to see what everyone around me was teaching me. You know what, things haven't really changed that much because life is a learning experience I have seen many things in my life, but there is and has been something in my life as of age 45 years old/young? And that is I just know that there WILL be a cure for Leukemia!!! You just have to sit down and keep this in your minds. I would like you to see something that "tugs" at me heart strings and basically has little to do with Leukemia but has a lot of things to do with two events that I had to do through in my life, and after these I sill am living proof that so far I have survived. And by the way so far. so have you. This video has brought some tears as well as some joy to myself. It just shows what one human can do for each other, and then for good luck add in a dog. Yes GOD has a way of sorting in a dog, if you so should spell dog backwards it comes up with GOD. I always wondered about that. *www.youtube.com/watch?v=mz2kDH0MCn4 <http://www.youtube.com/watch?v=mz2kDH0MCn4>* 18's, Marty On Wed, Jun 17, 2015 at 11:48 AM, 'Icandoallttc' via CMLHope < cmlhope@googlegroups.com> wrote: > Not every one gets to pcr on tkis. I never did on gleevec. It quit on > me instead of me quitting. > I finally reached pcr on sprycel. If you do quit keep a close check on > your counts. > Remember there are more tkis you can take if you have problems on down the > line. > I am now on the newest one out. > Live each day for that day and enjoy it to its fullest. I have been taking > tkis for 11 years as of last January and I'm still here. > > > Prayers & Blessings Jeanie đđ18,s > Dx 1/2004 > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib January 2015 > Dr Balducci Moffitt Cancer Center > > On Jun 17, 2015, at 8:35 AM, ANGELYN ESDERS wrote: > > Thanks, Marty. I am having no great emotional upheaval over quitting > Gleevec. Whatever will be, will be, and everything is a learning > experience. It just feels strange after 14+ years. > > In other news, Monday a new platelet dr. decided to do a BMB. > You won't believe this: It took him FOUR tries to get a viable sample. > Never had this happen before. Four crunching entries. > Sort of like having four BMB's at the same time. Afterwards I was almost > in a state of shock and could not stand, nauseous, very stressed. (In > Canada we do not get sedation or morphine for this procedure.) It took me > 90 minutes to de-stress and had to drive myself home because he had not > warned me that he intended to do this and to bring a driver along. There's > one doctor who will NOT be doing another BMB on me!! I think he needs a few > more lessons in how to do it. > > Anyway, I am finestill low platelets. Life goes on. > Angie > > > -- > *From:* Marty Gartenberg > *To:* cmlhope@googlegroups.com > *Sent:* Wednesday, June 17, 2015 7:29 AM > *Subject:* Re: [CMLHope] Stopping Gleevec > > Hi Angie, > > You are not thee only one that has stopped your TKI and felt that way. > sometimes something that we take as far as any TKI's ends up being a crutch > for us and we always seem to worry if this or that will come back to haunt > us. It is a normal human response and we worry about it. > > Angie, since your really feeling better without the Gleevec then you > should learn to live your life in the best way that you can. > > I have seen this many times before. A man that both Zavie and I knew was > on Alpha Interferon and suffered immensely from it's horrible side effects. > He suffered for many years and when he was finally PCRU everyone told him > to stop using it anymore but he still continued still suffering because it > had become a crutch for him. He had the same feelings as you now have and > after a lot of coaching from everyone he finally stopped it. > > He has been off of it for many years and no reoccurrence of CML ever came > back to him. His system finally "burned out" his CML. > > Remember that everything in life has a double edged soared. If you do > some
Re: [CMLHope] Stopping Gleevec
Dear Angie, I stopped gleevec after being on 400 mg for 2 yrs and 2 mos. It was because I had a brain bleed, then another. I decided back in 2007 before it was popular that I'd rather take my chances and keep myself monitored by blood tests than die of a stroke. I did have a big stroke then in 2010. So I went for 7 yrs without a tki, and my IS numbers were up to 23 when my doc and I decided to start bosulif at 100 mg. This was at Northwestern Medical in Chicago. I am doing fine on it. It took about 9 mos. to come into remission and my doc would have preferred to have me on a higher dose. I am convinced they are all finding out that many patients don't need the high dosages they are prescribing. Don't be afraid to go off!!! They can monitor you and do something quick if you go up fast, which you probably will not. Trust me, the benefits outweigh any fear. No fear, Angie, no fear! 18's, Susan F. Zimmerman -Original Message- From: Giora Sharf To: cmlhope Sent: Wed, Jun 17, 2015 2:35 am Subject: RE: [CMLHope] Stopping Gleevec Hi Angie We have similar story. I started Glivec on 14.2.2001 and was on 400 mg till 10.6.2014 when I agreed to my Dr's advise to stop. I am now 1 year without treatment doing very well, monthly PCR are all in deep MR4.5 response. I fully understand your concern, I had the same issues and didnât agree to stop for couple of years. When I saw the data indicating that all the patients who stop and relapse (about 50-60 %) respond well when they restart treatment, I agreed to stop. I also didnât have severe side effects on Glivec, but I am happy to be drug free and do very strict monthly or 6 weeks monitoring. Please remember if you decide to stop- the most important thing is a very strict monthly PCR on international scale. (IS) Good luck whatever you decide Giora From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of ANGELYN ESDERS Sent: Wednesday, June 17, 2015 4:03 AM To: cmlhope@googlegroups.com Subject: [CMLHope] Stopping Gleevec I just received an email from my oncologist telling me that it is safe for me to stop Gleevec for 3 months. I started Gleevec in January 2001, and reached cytogenic remission in July 2001. I've continued on 300mg per day. I was in the study for 12 years. I feel like it is my safety net between wellness and reoccurrence of CML. I am almost afraid to stop it. I no longer have any side effects from it. Who has stopped Gleevec, and what have you experienced as a result of doing so? Thanking you all for your input... Angie in Canada -- -- [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. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Stopping Gleevec and BMB X4 !
Not every one gets to pcr on tkis. I never did on gleevec. It quit on me instead of me quitting. I finally reached pcr on sprycel. If you do quit keep a close check on your counts. Remember there are more tkis you can take if you have problems on down the line. I am now on the newest one out. Live each day for that day and enjoy it to its fullest. I have been taking tkis for 11 years as of last January and I'm still here. Prayers & Blessings Jeanie đđ18,s Dx 1/2004 Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center > On Jun 17, 2015, at 8:35 AM, ANGELYN ESDERS wrote: > > Thanks, Marty. I am having no great emotional upheaval over quitting Gleevec. > Whatever will be, will be, and everything is a learning experience. It just > feels strange after 14+ years. > > In other news, Monday a new platelet dr. decided to do a BMB. > You won't believe this: It took him FOUR tries to get a viable sample. Never > had this happen before. Four crunching entries. > Sort of like having four BMB's at the same time. Afterwards I was almost in a > state of shock and could not stand, nauseous, very stressed. (In Canada we do > not get sedation or morphine for this procedure.) It took me 90 minutes to > de-stress and had to drive myself home because he had not warned me that he > intended to do this and to bring a driver along. There's one doctor who will > NOT be doing another BMB on me!! I think he needs a few more lessons in how > to do it. > > Anyway, I am finestill low platelets. Life goes on. > Angie > > > From: Marty Gartenberg > To: cmlhope@googlegroups.com > Sent: Wednesday, June 17, 2015 7:29 AM > Subject: Re: [CMLHope] Stopping Gleevec > > Hi Angie, > > You are not thee only one that has stopped your TKI and felt that way. > sometimes something that we take as far as any TKI's ends up being a crutch > for us and we always seem to worry if this or that will come back to haunt > us. It is a normal human response and we worry about it. > > Angie, since your really feeling better without the Gleevec then you should > learn to live your life in the best way that you can. > > I have seen this many times before. A man that both Zavie and I knew was on > Alpha Interferon and suffered immensely from it's horrible side effects. He > suffered for many years and when he was finally PCRU everyone told him to > stop using it anymore but he still continued still suffering because it had > become a crutch for him. He had the same feelings as you now have and after a > lot of coaching from everyone he finally stopped it. > > He has been off of it for many years and no reoccurrence of CML ever came > back to him. His system finally "burned out" his CML. > > Remember that everything in life has a double edged soared. If you do > something will it come back to haunt you or if you don't do something will it > come back to haunt you?? > > I just can't live my life that way, and if something does come back then I > will deal with it. > Remember me telling everyone that Leukemia is both a disease of not only the > body but it also poisons the mind. > > Angie, why not start writing a diary and put everything in there that you > have gone through the day? I do it and it lets me reflect about what I could > have done better or worse during the day. I call it my frustrations and how > to deal with them, and it really works for me as I am sure it will also work > for you or anyone else. By the way I see that Giora sent you his response. > read it if you haven't as yet. > > Here is something called "expect the best" Please read it and it will also > help you with yourself. > > One last thing. I am not a doctor but have gone through a lot of things in my > life health wise as you already know. Have you ever wondered why I am still > alive? I did at one time but maybe it is because I try helping others as a > promise that I once made to GOD and also received help myself from others. It > is a two way street, or I am the luckiest son of a bitch on this planet ??? > 18's, > > Marty > > > EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. > TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF > YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER > MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET. > WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF > MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING > INTO THE REALM OF POSSIBILITY. WH
Re: [CMLHope] Stopping Gleevec and BMB X4 !
Thanks, Marty. I am having no great emotional upheaval over quitting Gleevec. Whatever will be, will be, and everything is a learning experience. It just feels strange after 14+ years. In other news, Monday a new platelet dr. decided to do a BMB. You won't believe this: It took him FOUR tries to get a viable sample. Never had this happen before. Four crunching entries. Sort of like having four BMB's at the same time. Afterwards I was almost in a state of shock and could not stand, nauseous, very stressed. (In Canada we do not get sedation or morphine for this procedure.) It took me 90 minutes to de-stress and had to drive myself home because he had not warned me that he intended to do this and to bring a driver along. There's one doctor who will NOT be doing another BMB on me!! I think he needs a few more lessons in how to do it. Anyway, I am finestill low platelets. Life goes on.Angie  From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Wednesday, June 17, 2015 7:29 AM Subject: Re: [CMLHope] Stopping Gleevec Hi Angie, You are not thee only one that has stopped your TKI and felt that way. sometimes something that we take as far as any TKI's ends up being a crutch for us and we always seem to worry if this or that will come back to haunt us. It is a normal human response and we worry about it. Angie, since your really feeling better without the Gleevec then you should learn to live your life in the best way that you can. I have seen this many times before. A man that both Zavie and I knew was on Alpha Interferon and suffered immensely from it's horrible side effects. He suffered for many years and when he was finally PCRU everyone told him to stop using it anymore but he still continued still suffering because it had become a crutch for him. He had the same feelings as you now have and after a lot of coaching from everyone he finally stopped it. He has been off of it for many years and no reoccurrence of CML ever came back to him. His system finally "burned out" his CML. Remember that everything in life has a double edged soared. If you do something will it come back to haunt you or if you don't do something will it come back to haunt you?? I just can't live my life that way, and if something does come back then I will deal with it.Remember me telling everyone that Leukemia is both a disease of not only the body but it also poisons the mind. Angie, why not start writing a diary and put everything in there that you have gone through the day? I do it and it lets me reflect about what I could have done better or worse during the day. I call it my frustrations and how to deal with them, and it really works for me as I am sure it will also work for you or anyone else. By the way I see that Giora sent you his response. read it if you haven't as yet. Here is something called "expect the best" Please read it and it will also help you with yourself. One last thing. I am not a doctor but have gone through a lot of things in my life health wise as you already know. Have you ever wondered why I am still alive? I did at one time but maybe it is because I try helping others as a promise that I once made to GOD and also received help myself from others. It is a two way street, or I am the luckiest son of a bitch on this planet ???18's, Marty    EXPECT THE BEST, MINDOVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO HAVE SUCCESS ATANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU EXPECT THE WORSETHEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF YOU EXPECT THEBEST THEN THAT IS WHAT YOU WILL GET.WHAT WE HAVE TO LEARNTO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TO EXPECT ANDNOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OF POSSIBILITY.WHEN YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVESINTO THE AREA OF POSSIBILITY.EVERY GREAT THINGEVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE BEGINNING OF A DOUBTFULUNDERTAKING IS THE ONE THING THAT INSURES THE SUCCESSFUL OUTCOME...FOCUS... 18's,Marty On Tue, Jun 16, 2015 at 9:02 PM, ANGELYN ESDERS wrote: I just received an email from my oncologist telling me that it is safe for me to stop Gleevec for 3 months.I started Gleevec in January 2001, and reached cytogenic remission in July 2001. I've continued on 300mg per day.I was in the study for 12 years.I feel like it is my safety net between wellness and reoccurrence of CML.I am almost afraid to stop it. I no longer have any side effects from it.Who has stopped Gleevec, and what have you experienced as a result of doing so?Thanking you all for your input...Angie in Canada-- -- [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 th
Re: [CMLHope] Stopping Gleevec
Hi Angie, You are not thee only one that has stopped your TKI and felt that way. sometimes something that we take as far as any TKI's ends up being a crutch for us and we always seem to worry if this or that will come back to haunt us. It is a normal human response and we worry about it. Angie, since your really feeling better without the Gleevec then you should learn to live your life in the best way that you can. I have seen this many times before. A man that both Zavie and I knew was on Alpha Interferon and suffered immensely from it's horrible side effects. He suffered for many years and when he was finally PCRU everyone told him to stop using it anymore but he still continued still suffering because it had become a crutch for him. He had the same feelings as you now have and after a lot of coaching from everyone he finally stopped it. He has been off of it for many years and no reoccurrence of CML ever came back to him. His system finally "burned out" his CML. Remember that everything in life has a double edged soared. If you do something will it come back to haunt you or if you don't do something will it come back to haunt you?? I just can't live my life that way, and if something does come back then I will deal with it. Remember me telling everyone that Leukemia is both a disease of not only the body but it also poisons the mind. Angie, why not start writing a diary and put everything in there that you have gone through the day? I do it and it lets me reflect about what I could have done better or worse during the day. I call it my frustrations and how to deal with them, and it really works for me as I am sure it will also work for you or anyone else. By the way I see that Giora sent you his response. read it if you haven't as yet. Here is something called "expect the best" Please read it and it will also help you with yourself. One last thing. I am not a doctor but have gone through a lot of things in my life health wise as you already know. Have you ever wondered why I am still alive? I did at one time but maybe it is because I try helping others as a promise that I once made to GOD and also received help myself from others. It is a two way street, or I am the luckiest son of a bitch on this planet ??? 18's, Marty *EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.* *WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY.* *EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE SUCCESSFUL OUTCOME...* *FOCUS...* 18's, Marty On Tue, Jun 16, 2015 at 9:02 PM, ANGELYN ESDERS wrote: > I just received an email from my oncologist telling me that it is safe for > me to stop Gleevec for 3 months. > I started Gleevec in January 2001, and reached cytogenic remission in July > 2001. > I've continued on 300mg per day. > I was in the study for 12 years. > I feel like it is my safety net between wellness and reoccurrence of CML. > I am almost afraid to stop it. I no longer have any side effects from it. > Who has stopped Gleevec, and what have you experienced as a result of > doing so? > Thanking you all for your input... > Angie in Canada > > -- > -- > [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
RE: [CMLHope] Stopping Gleevec
Dear Angie I am living in a beautiful beach city named Netanya, 30 Kms north of Tel Aviv. We have few oldies on this list and it is always nice to hear how well we are doing. It is not easy for the new patients to understand that it wasnât like this when we were diagnosed 15 years ago. Here is to health and life Giora From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of ANGELYN ESDERS Sent: Wednesday, June 17, 2015 1:12 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Stopping Gleevec Thank you for your kind letter, Giora. I remember you from years back. You live in Tel Aviv? I am so happy to hear that you are doing so well. I feel encouraged. Angie _ From: Giora Sharf To: cmlhope@googlegroups.com Sent: Wednesday, June 17, 2015 2:35 AM Subject: RE: [CMLHope] Stopping Gleevec Hi Angie We have similar story. I started Glivec on 14.2.2001 and was on 400 mg till 10.6.2014 when I agreed to my Dr's advise to stop. I am now 1 year without treatment doing very well, monthly PCR are all in deep MR4.5 response. I fully understand your concern, I had the same issues and didnât agree to stop for couple of years. When I saw the data indicating that all the patients who stop and relapse (about 50-60 %) respond well when they restart treatment, I agreed to stop. I also didnât have severe side effects on Glivec, but I am happy to be drug free and do very strict monthly or 6 weeks monitoring. Please remember if you decide to stop- the most important thing is a very strict monthly PCR on international scale. (IS) Good luck whatever you decide Giora From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of ANGELYN ESDERS Sent: Wednesday, June 17, 2015 4:03 AM To: cmlhope@googlegroups.com Subject: [CMLHope] Stopping Gleevec I just received an email from my oncologist telling me that it is safe for me to stop Gleevec for 3 months. I started Gleevec in January 2001, and reached cytogenic remission in July 2001. I've continued on 300mg per day. I was in the study for 12 years. I feel like it is my safety net between wellness and reoccurrence of CML. I am almost afraid to stop it. I no longer have any side effects from it. Who has stopped Gleevec, and what have you experienced as a result of doing so? Thanking you all for your input... Angie in Canada -- -- [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. 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
Re: [CMLHope] Stopping Gleevec
Thank you for your kind letter, Giora. I remember you from years back. You live in Tel Aviv? I am so happy to hear that you are doing so well. I feel encouraged.Angie  From: Giora Sharf To: cmlhope@googlegroups.com Sent: Wednesday, June 17, 2015 2:35 AM Subject: RE: [CMLHope] Stopping Gleevec #yiv1061552755 #yiv1061552755 -- _filtered #yiv1061552755 {panose-1:2 4 5 3 5 4 6 3 2 4;} _filtered #yiv1061552755 {font-family:Calibri;panose-1:2 15 5 2 2 2 4 3 2 4;} _filtered #yiv1061552755 {font-family:Tahoma;panose-1:2 11 6 4 3 5 4 4 2 4;} _filtered #yiv1061552755 {font-family:Garamond;panose-1:2 2 4 4 3 3 1 1 8 3;}#yiv1061552755 #yiv1061552755 p.yiv1061552755MsoNormal, #yiv1061552755 li.yiv1061552755MsoNormal, #yiv1061552755 div.yiv1061552755MsoNormal {margin:0cm;margin-bottom:.0001pt;font-size:12.0pt;}#yiv1061552755 a:link, #yiv1061552755 span.yiv1061552755MsoHyperlink {color:blue;text-decoration:underline;}#yiv1061552755 a:visited, #yiv1061552755 span.yiv1061552755MsoHyperlinkFollowed {color:purple;text-decoration:underline;}#yiv1061552755 p {margin-right:0cm;margin-left:0cm;font-size:12.0pt;}#yiv1061552755 span.yiv1061552755EmailStyle18 {color:#1F497D;}#yiv1061552755 .yiv1061552755MsoChpDefault {font-size:10.0pt;} _filtered #yiv1061552755 {margin:72.0pt 90.0pt 72.0pt 90.0pt;}#yiv1061552755 div.yiv1061552755WordSection1 {}#yiv1061552755 Hi AngieWe have similar story. I started Glivec on 14.2.2001 and was on 400 mg till 10.6.2014 when I agreed to my Dr's advise to stop. I am now 1 year without treatment doing very well, monthly PCR are all in deep MR4.5 response.I fully understand your concern, I had the same issues and didnât agree to stop for couple of years. When I saw the data indicating that all the patients who stop and relapse (about 50-60 %) respond well when they restart treatment, I agreed to stop. I also didnât have severe side effects on Glivec, but I am happy to be drug free and do very strict monthly or 6 weeks monitoring. Please remember if you decide to stop- the most important thing is a very strict monthly PCR on international scale. (IS)Good luck whatever you decideGiora  From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of ANGELYN ESDERS Sent: Wednesday, June 17, 2015 4:03 AM To: cmlhope@googlegroups.com Subject: [CMLHope] Stopping Gleevec  I just received an email from my oncologist telling me that it is safe for me to stop Gleevec for 3 months.I started Gleevec in January 2001, and reached cytogenic remission in July 2001. I've continued on 300mg per day.I was in the study for 12 years.I feel like it is my safety net between wellness and reoccurrence of CML.I am almost afraid to stop it. I no longer have any side effects from it.Who has stopped Gleevec, and what have you experienced as a result of doing so?Thanking you all for your input...Angie in Canada-- -- [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
RE: [CMLHope] Stopping Gleevec
Hi Angie We have similar story. I started Glivec on 14.2.2001 and was on 400 mg till 10.6.2014 when I agreed to my Dr's advise to stop. I am now 1 year without treatment doing very well, monthly PCR are all in deep MR4.5 response. I fully understand your concern, I had the same issues and didnât agree to stop for couple of years. When I saw the data indicating that all the patients who stop and relapse (about 50-60 %) respond well when they restart treatment, I agreed to stop. I also didnât have severe side effects on Glivec, but I am happy to be drug free and do very strict monthly or 6 weeks monitoring. Please remember if you decide to stop- the most important thing is a very strict monthly PCR on international scale. (IS) Good luck whatever you decide Giora From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of ANGELYN ESDERS Sent: Wednesday, June 17, 2015 4:03 AM To: cmlhope@googlegroups.com Subject: [CMLHope] Stopping Gleevec I just received an email from my oncologist telling me that it is safe for me to stop Gleevec for 3 months. I started Gleevec in January 2001, and reached cytogenic remission in July 2001. I've continued on 300mg per day. I was in the study for 12 years. I feel like it is my safety net between wellness and reoccurrence of CML. I am almost afraid to stop it. I no longer have any side effects from it. Who has stopped Gleevec, and what have you experienced as a result of doing so? Thanking you all for your input... Angie in Canada -- -- [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.