Re: [CMLHope] Re: Hi..Susan's Life who did the doc recommend?
That is great! Finding the right doctor is the best medicine. I was with my first Onc for 5 years and I really liked him, and then I had so many problems he just didn't know what to do. I decided then to go to Moffitt; so glad I did. Good luck! Jeanie3 -- -- [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/groups/opt_out.
Re: [CMLHope] Re: Hi..Susan's Life who did the doc recommend?
Hi Susan, I'm wondering if you have already seen your doctor, and if you did, then how did everything go? Anyway, I once saw a movie, The Shawshank Redemption, and there was something said by a prisoner who was falsely convicted of a murder he did not commit. He was given a life sentence. What he said was, Either get busy living or get busy dying I see by all that your doing you chose to accept his first statement, get busy living. You know that life is not a bowl of cherries but since it isn't, the thing that I choose to do is to eat a bowl of cherries whenever they are in season. Get my drift? 18's Marty On Sun, Jul 21, 2013 at 1:08 PM, Susan Zimmerman rszim0...@aol.com wrote: Hi Jeanie, Dr. Pinilla recommended Jessica Altman. Since that was the second recommendation for her and she is at Northwestern, I'm going with her. Sure hope she's taking new patients, will find out Monday morning. Pat Elliott has sent me a video of her with a patient. Did you all know what a great great resource Pat is? I am amazed at her dedication to our cause and the organization she works for. Thanks so much Pat for all your help. Hope everyone is having a great and wonderful Sunday! Let's celebrate our lives together! 18's, Susan -Original Message- From: ICANDOALLTTC icandoall...@aol.com To: cmlhope cmlhope@googlegroups.com Sent: Sun, Jul 21, 2013 9:47 am Subject: Re: [CMLHope] Re: Hi..Susan's Life who did the doc recommend? Hi Susan, Great uplifting story. A question? Who did Dr Pinilla recommend to you? Hang in there. Blessing, Jeanie3 In a message dated 7/20/2013 8:34:08 P.M. Eastern Daylight Time, esd...@rogers.com writes: AWESOME Susan! That was very interesting. Keep on celebrating! What lies behind us and what lies before us are tiny matters compared to what lies within us Angie *From:* Susan Zimmerman rszim0...@aol.com *To:* cmlhope@googlegroups.com *Sent:* Saturday, July 20, 2013 6:14:10 PM *Subject:* Re: [CMLHope] Re: Hi Thanks and hats off to Marty and Millie. I realize I am no different, believe me. You guys haven't heard much about my life, and maybe I won't bore you with details today. But I do stay busy now doing the things I love. I just was slightly paralyzed about getting going to a specialist. I knew I must do that, and have researched many around the country over the years. A good kick in the butt by you blood brothers and sisters was exactly what I needed. I earned my theology degree at age 52 (year 2000), in Florida before we returned here to Indiana in 2010. Before moving to Fla., I also have done a lot of counseling to lay people and training of leaders over the years in the Christian element. Did a lot of public speaking for seventeen years within a parachurch organization. Worked for eleven years at what I called a social service agency within a large church. I coordinated all the volunteers to go to nursing homes, prisons, juvenile detention facilities, etc. Planned 3 or 4 trips a year to raise money for all this. Also had a list of shut-ins that we ministered to regularly. Did visitation to the hospitals as well. Still do that! The best part was giving food to the poor through the church. I couldn't wait to go to work each day! After that time period ended in my life I was still very active going on mission trips, conducting weekend marriage seminars, and marriage classes. Had gone into selling advertising for Christian organizations to make my living after the church thing was done. Now I do a lot of studying and hope to develop some teaching classes at our church, etc. I coordinate the prayer team at our church as well, and send out prayer requests by e-mail for two organizations. As I told Marcie, I love Israel and support them in any way I can. Sometimes our house also becomes a hotel as our friends and family pop in and out. So that's what keeps me busy, and other family things as well. To begin going back to doctors regularly again is beyond fun to think about, but the alternative is simply not acceptable. I really do thank God every day for each day and love Celebrating My Life!!! Oh, by the way, I asked Dr. Pinilla through e-mail about the vaccine he was working on, but he only answered me about his recommendation of medication and two docs he recommended. I guess I asked him too many questions for him to answer.totally understandable. Thanks again for all the encouragement, 18's, Susan F. Zimmerman Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you. Hab. 1:5 -Original Message- From: Marty Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Sat, Jul 20, 2013 4:38 pm Subject: Re: [CMLHope] Re: Hi Hi Susan, Sure you may have your problems but the important thing is that you have decided to try and do
Re: [CMLHope] Re: Hi..Susan's Life who did the doc recommend?
Hi Marty, I love cherries tooo. My hubby loved them tooo. Hope you and everyone is good. My lemons, oranges, grapefruit, and tangerines are getting bigger everyday. Just another day in paradise. Blessings, Jeanie3 In a message dated 7/22/2013 7:51:28 A.M. Eastern Daylight Time, wa2...@gmail.com writes: Hi Susan, I'm wondering if you have already seen your doctor, and if you did, then how did everything go? Anyway, I once saw a movie, The Shawshank Redemption, and there was something said by a prisoner who was falsely convicted of a murder he did not commit. He was given a life sentence. What he said was, Either get busy living or get busy dying I see by all that your doing you chose to accept his first statement, get busy living. You know that life is not a bowl of cherries but since it isn't, the thing that I choose to do is to eat a bowl of cherries whenever they are in season. Get my drift? 18's Marty On Sun, Jul 21, 2013 at 1:08 PM, Susan Zimmerman _rszim0702@aol.com_ (mailto:rszim0...@aol.com) wrote: Hi Jeanie, Dr. Pinilla recommended Jessica Altman. Since that was the second recommendation for her and she is at Northwestern, I'm going with her. Sure hope she's taking new patients, will find out Monday morning. Pat Elliott has sent me a video of her with a patient. Did you all know what a great great resource Pat is? I am amazed at her dedication to our cause and the organization she works for. Thanks so much Pat for all your help. Hope everyone is having a great and wonderful Sunday! Let's celebrate our lives together! 18's, Susan -Original Message- From: ICANDOALLTTC _ICANDOALLTTC@aol.com_ (mailto:icandoall...@aol.com) To: cmlhope _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) Sent: Sun, Jul 21, 2013 9:47 am Subject: Re: [CMLHope] Re: Hi..Susan's Life who did the doc recommend? Hi Susan, Great uplifting story. A question? Who did Dr Pinilla recommend to you? Hang in there. Blessing, Jeanie3 In a message dated 7/20/2013 8:34:08 P.M. Eastern Daylight Time, _esders@rogers.com_ (mailto:esd...@rogers.com) writes: AWESOME Susan! That was very interesting. Keep on celebrating! What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Susan Zimmerman _rszim0702@aol.com_ (mailto:rszim0...@aol.com) To: _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) Sent: Saturday, July 20, 2013 6:14:10 PM Subject: Re: [CMLHope] Re: Hi Thanks and hats off to Marty and Millie. I realize I am no different, believe me. You guys haven't heard much about my life, and maybe I won't bore you with details today. But I do stay busy now doing the things I love. I just was slightly paralyzed about getting going to a specialist. I knew I must do that, and have researched many around the country over the years. A good kick in the butt by you blood brothers and sisters was exactly what I needed. I earned my theology degree at age 52 (year 2000), in Florida before we returned here to Indiana in 2010. Before moving to Fla., I also have done a lot of counseling to lay people and training of leaders over the years in the Christian element. Did a lot of public speaking for seventeen years within a parachurch organization. Worked for eleven years at what I called a social service agency within a large church. I coordinated all the volunteers to go to nursing homes, prisons, juvenile detention facilities, etc. Planned 3 or 4 trips a year to raise money for all this. Also had a list of shut-ins that we ministered to regularly. Did visitation to the hospitals as well. Still do that! The best part was giving food to the poor through the church. I couldn't wait to go to work each day! After that time period ended in my life I was still very active going on mission trips, conducting weekend marriage seminars, and marriage classes. Had gone into selling advertising for Christian organizations to make my living after the church thing was done. Now I do a lot of studying and hope to develop some teaching classes at our church, etc. I coordinate the prayer team at our church as well, and send out prayer requests by e-mail for two organizations. As I told Marcie, I love Israel and support them in any way I can. Sometimes our house also becomes a hotel as our friends and family pop in and out. So that's what keeps me busy, and other family things as well. To begin going back to doctors regularly again is beyond fun to think about, but the alternative is simply not acceptable. I really do thank God every day for each day and love Celebrating My Life!!! Oh, by the way, I asked Dr. Pinilla through e-mail about the vaccine he was working on, but he only answered me about his recommendation of medication and two docs he recommended. I guess I asked him too
Re: [CMLHope] Re: Hi..Susan's Life who did the doc recommend?
Hi Susan, Great uplifting story. A question? Who did Dr Pinilla recommend to you? Hang in there. Blessing, Jeanie3 In a message dated 7/20/2013 8:34:08 P.M. Eastern Daylight Time, esd...@rogers.com writes: AWESOME Susan! That was very interesting. Keep on celebrating! What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Susan Zimmerman rszim0...@aol.com To: cmlhope@googlegroups.com Sent: Saturday, July 20, 2013 6:14:10 PM Subject: Re: [CMLHope] Re: Hi Thanks and hats off to Marty and Millie. I realize I am no different, believe me. You guys haven't heard much about my life, and maybe I won't bore you with details today. But I do stay busy now doing the things I love. I just was slightly paralyzed about getting going to a specialist. I knew I must do that, and have researched many around the country over the years. A good kick in the butt by you blood brothers and sisters was exactly what I needed. I earned my theology degree at age 52 (year 2000), in Florida before we returned here to Indiana in 2010. Before moving to Fla., I also have done a lot of counseling to lay people and training of leaders over the years in the Christian element. Did a lot of public speaking for seventeen years within a parachurch organization. Worked for eleven years at what I called a social service agency within a large church. I coordinated all the volunteers to go to nursing homes, prisons, juvenile detention facilities, etc. Planned 3 or 4 trips a year to raise money for all this. Also had a list of shut-ins that we ministered to regularly. Did visitation to the hospitals as well. Still do that! The best part was giving food to the poor through the church. I couldn't wait to go to work each day! After that time period ended in my life I was still very active going on mission trips, conducting weekend marriage seminars, and marriage classes. Had gone into selling advertising for Christian organizations to make my living after the church thing was done. Now I do a lot of studying and hope to develop some teaching classes at our church, etc. I coordinate the prayer team at our church as well, and send out prayer requests by e-mail for two organizations. As I told Marcie, I love Israel and support them in any way I can. Sometimes our house also becomes a hotel as our friends and family pop in and out. So that's what keeps me busy, and other family things as well. To begin going back to doctors regularly again is beyond fun to think about, but the alternative is simply not acceptable. I really do thank God every day for each day and love Celebrating My Life!!! Oh, by the way, I asked Dr. Pinilla through e-mail about the vaccine he was working on, but he only answered me about his recommendation of medication and two docs he recommended. I guess I asked him too many questions for him to answer.totally understandable. Thanks again for all the encouragement, 18's, Susan F. Zimmerman Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you. Hab. 1:5 -Original Message- From: Marty Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Sat, Jul 20, 2013 4:38 pm Subject: Re: [CMLHope] Re: Hi Hi Susan, Sure you may have your problems but the important thing is that you have decided to try and do something about them. You are no different then anyone else. Sometimes we just go through so much that we are terribly frightened to do anything about them because anything that is of the unknown always seems to frighten us. I want to tell you that you, Millie, Richard, Greenie and all of the rest of those even on different CML sites that are suffering from CML would probably not be here right now if it weren't for the TKI's that are out there now. You will see, mark my words, that there will be something coming soon that will rid you and everyone else of this terrible disease just like when the Polio vaccine got rid of Polio. Just like Penicillin and all of the rest of the antibiotics help with curing infections. I think that we all should take an example from Millie. She may have some debilitating things going on but she still keeps herself busy with making her pillow cases and shams and the like. She says that it is nuts, but is it really? She further says that, and I quote her exact words: I know it's nuts, but doing these things, keeps me going (like the energizer bunny) and takes my mind off of everything else. Enough said judge for yourself. Get doing things that you like, I guarantee that it will make you feel better. I always say that your mind is a very powerful tool, you just have to learn to use it in constructive ways. Now I'm not saying that it is going to cure you
Re: [CMLHope] Re: Hi..Susan's Life who did the doc recommend?
Hi Jeanie, Dr. Pinilla recommended Jessica Altman. Since that was the second recommendation for her and she is at Northwestern, I'm going with her. Sure hope she's taking new patients, will find out Monday morning. Pat Elliott has sent me a video of her with a patient. Did you all know what a great great resource Pat is? I am amazed at her dedication to our cause and the organization she works for. Thanks so much Pat for all your help. Hope everyone is having a great and wonderful Sunday! Let's celebrate our lives together! 18's, Susan -Original Message- From: ICANDOALLTTC icandoall...@aol.com To: cmlhope cmlhope@googlegroups.com Sent: Sun, Jul 21, 2013 9:47 am Subject: Re: [CMLHope] Re: Hi..Susan's Life who did the doc recommend? Hi Susan, Great uplifting story. A question? Who did Dr Pinilla recommend to you? Hang in there. Blessing, Jeanie3 In a message dated 7/20/2013 8:34:08 P.M. Eastern Daylight Time, esd...@rogers.com writes: AWESOME Susan! That was very interesting. Keep on celebrating! What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Susan Zimmerman rszim0...@aol.com To: cmlhope@googlegroups.com Sent: Saturday, July 20, 2013 6:14:10 PM Subject: Re: [CMLHope] Re: Hi Thanks and hats off to Marty and Millie. I realize I am no different, believe me. You guys haven't heard much about my life, and maybe I won't bore you with details today. But I do stay busy now doing the things I love. I just was slightly paralyzed about getting going to a specialist. I knew I must do that, and have researched many around the country over the years. A good kick in the butt by you blood brothers and sisters was exactly what I needed. I earned my theology degree at age 52 (year 2000), in Florida before we returned here to Indiana in 2010. Before moving to Fla., I also have done a lot of counseling to lay people and training of leaders over the years in the Christian element. Did a lot of public speaking for seventeen years within a parachurch organization. Worked for eleven years at what I called a social service agency within a large church. I coordinated all the volunteers to go to nursing homes, prisons, juvenile detention facilities, etc. Planned 3 or 4 trips a year to raise money for all this. Also had a list of shut-ins that we ministered to regularly. Did visitation to the hospitals as well. Still do that! The best part was giving food to the poor through the church. I couldn't wait to go to work each day! After that time period ended in my life I was still very active going on mission trips, conducting weekend marriage seminars, and marriage classes. Had gone into selling advertising for Christian organizations to make my living after the church thing was done. Now I do a lot of studying and hope to develop some teaching classes at our church, etc. I coordinate the prayer team at our church as well, and send out prayer requests by e-mail for two organizations. As I told Marcie, I love Israel and support them in any way I can. Sometimes our house also becomes a hotel as our friends and family pop in and out. So that's what keeps me busy, and other family things as well. To begin going back to doctors regularly again is beyond fun to think about, but the alternative is simply not acceptable. I really do thank God every day for each day and love Celebrating My Life!!! Oh, by the way, I asked Dr. Pinilla through e-mail about the vaccine he was working on, but he only answered me about his recommendation of medication and two docs he recommended. I guess I asked him too many questions for him to answer.totally understandable. Thanks again for all the encouragement, 18's, Susan F. Zimmerman Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you. Hab. 1:5 -Original Message- From: Marty Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Sat, Jul 20, 2013 4:38 pm Subject: Re: [CMLHope] Re: Hi Hi Susan, Sure you may have your problems but the important thing is that you have decided to try and do something about them. You are no different then anyone else. Sometimes we just go through so much that we are terribly frightened to do anything about them because anything that is of the unknown always seems to frighten us. I want to tell you that you, Millie, Richard, Greenie and all of the rest of those even on different CML sites that are suffering from CML would probably not be here right now if it weren't for the TKI's that are out there now. You will see, mark my words, that there will be something coming soon
Re: [CMLHope] Re: Hi
Thanks all so very much for the encouragement. I think I've made my decision about where to go, will contact Northwestern univ. on Monday to see a specialist who was recommended by Dr. Pinilla from Moffitt Cancer Center in Tampa (my former specialist). You have no idea how you've helped me just by your comments. After six years without medicine I needed a swift kick to get me DOING something about all this. As you say, Beth, help is out there but I just have not had the gumption to get going about it. Richard, your comments have also been so very helpful. Thanks again, 18's, Susan -Original Message- From: Richard H richard1huff...@comcast.net To: cmlhope cmlhope@googlegroups.com Sent: Sat, Jul 20, 2013 1:25 am Subject: Re: [CMLHope] Re: Hi You are spot on about having the right specialist. I am very fortunate to have an ONC that is a specialist in CML and he has at least one other CML specialist in rhe same group to concult with. Last year the total group became part of the latest desinated National Cancer Centers. Richard H.. On Friday, July 19, 2013 11:38:47 AM UTC-5, Beth wrote: Amen! Specialist who deal with CML and know the ins and outs of the disease and how to treat it are the way to go! I traveled to Oregon to see Dr. Druker and it helps me immensely. I Have found it's not a lack of concern of general oncologist, but a lack of experience with CML or the new drugs, or how they might be administered..for each unique person and theri circumstances. Sounds goodget off the a---..and get cooking. Help is out there.and we will cheer you on.I too need a swift kick in the pants some times to inspire me to further action. It's not an easy road..and sometimes we can be weary travelers...so we set and rest for atime..and then do something to inspire to get up and do what we can. we are here for you! Hang in there MIllie..I love that you are busy doing your crochetinglove ...Beth -Original Message- From: Susan Zimmerman rszi...@aol.com To: cmlhope cml...@googlegroups.com Sent: Fri, Jul 19, 2013 9:52 am Subject: Re: [CMLHope] Re: Hi Thanks so much, Beth!!! I'm getting on the phone this afternoon come hell or high water! Somebody that holds great weight with me told me to get off my a__ and get moving toward a specialist, so I guess I'll do it! 18's Susan -Original Message- From: bkbarney bkba...@aol.com To: cmlhope cml...@googlegroups.com Sent: Fri, Jul 19, 2013 11:18 am Subject: Re: [CMLHope] Re: Hi Dear Susan, So sorry you are struggling. But I am so glad you are listening to the warning sides of your body and paying attention. So often people override their own knowing or their doctors won't listen...You stay strong and be a good advocate for yourself. I am on sprycel at a lower dose nowtitrating down to whatever will hold my numbers, and give me the least complicatons..The good news about most of the newer drugs, like sprycel and ponatinib is they are so much more potent than gleevec and tasigna are, so less drug, can sometimes do the job well for some folks. I was on bosutinib, unfortunately it's the only drug that did nothing for me, I had bad side effects on it, and when I found out the cancer marched right through it for me, I stopped immediately and went back on sprycel, which at a low dose, works for me. A high dose is not an option for many. I have not tried ponatinib, but have heard good things from my oncologist that the people she is treating with it, on lowered doses, are in remission and are not suffering severe side effects. It does have the liver pancreas profile of possible side effects there, but like tasigna, it's just a personal thing how each drug affects us. I would encourage tou to work with your doc and come up with a plan to try one of the newer drugs and see how it goes. I have heard about DR PInella's idea about a vaccine. It is not yet an option, but you can read about the latest research at work for us on the LLS site, as well as Moffit'sas my friend is down there healing from a bone marrow transplant, she is in the clinic every day..I will ask her to look into Dr PInella's research and see where it stands currently. I will let you know what I find out! Take good care Susan, stay positive, this is another pot hole in the road, but you can and will figure out what the next best step is...it may take time to tweak your meds and get the numbers back in line, but it will happen...stay protective and proactive...thinking of you and all my fellow warriors...hope you all have a great weekend ahead~ Beth -Original Message- From: Susan Zimmerman rszi...@aol.com To: cmlhope cml...@googlegroups.com Sent: Fri, Jul 19, 2013 6:48 am Subject: Re: [CMLHope] Re: Hi Hello all, Thanks so much for the inspiration, Millie, Marty, Richard and Beth! You guys are fantastic and I am suddenly most aware of your help and encouragement. Marcie
Re: [CMLHope] Re: Hi
Hi Susan, I started going to Northwestern Univ. in 1999 to see a Doctor named Dr. Tallman. He saved my life when he put me into a study with Gleevec in Jan. of 2000. He has moved on to a different Hosp. but my new Doctor is just as good if not better. I'm very happy with all of the people that I have come in contact with, they are my new family. Love them all. You picked a great place to go to. Good luck and keep me posted. Greenie In a message dated 7/20/2013 11:17:36 A.M. Eastern Daylight Time, rszim0...@aol.com writes: Thanks all so very much for the encouragement. I think I've made my decision about where to go, will contact Northwestern univ. on Monday to see a specialist who was recommended by Dr. Pinilla from Moffitt Cancer Center in Tampa (my former specialist). You have no idea how you've helped me just by your comments. After six years without medicine I needed a swift kick to get me DOING something about all this. As you say, Beth, help is out there but I just have not had the gumption to get going about it. Richard, your comments have also been so very helpful. Thanks again, 18's, Susan -Original Message- From: Richard H richard1huff...@comcast.net To: cmlhope cmlhope@googlegroups.com Sent: Sat, Jul 20, 2013 1:25 am Subject: Re: [CMLHope] Re: Hi You are spot on about having the right specialist. I am very fortunate to have an ONC that is a specialist in CML and he has at least one other CML specialist in rhe same group to concult with. Last year the total group became part of the latest desinated National Cancer Centers. Richard H.. On Friday, July 19, 2013 11:38:47 AM UTC-5, Beth wrote: Amen! Specialist who deal with CML and know the ins and outs of the disease and how to treat it are the way to go! I traveled to Oregon to see Dr. Druker and it helps me immensely. I Have found it's not a lack of concern of general oncologist, but a lack of experience with CML or the new drugs, or how they might be administered..for each unique person and theri circumstances. Sounds goodget off the a---..and get cooking. Help is out there.and we will cheer you on.I too need a swift kick in the pants some times to inspire me to further action. It's not an easy road..and sometimes we can be weary travelers...so we set and rest for atime..and then do som ething to inspire to get up and do what we can. we are here for you! Hang in there MIllie..I love that you are busy doing your crochetinglove ...Beth -Original Message- From: Susan Zimmerman rszi...@aol.com To: cmlhope cml...@googlegroups.com Sent: Fri, Jul 19, 2013 9:52 am Subject: Re: [CMLHope] Re: Hi Thanks so much, Beth!!! I'm getting on the phone this afternoon come hell or high water! Somebody that holds great weight with me told me to get off my a__ and get moving toward a specialist, so I guess I'll do it! 18's Susan -Original Message- From: bkbarney bkba...@aol.com To: cmlhope cml...@googlegroups.com Sent: Fri, Jul 19, 2013 11:18 am Subject: Re: [CMLHope] Re: Hi Dear Susan, So sorry you are struggling. But I am so glad you are listening to the warning sides of your body and paying attention. So often people override their own knowing or their doctors won't listen...You stay strong and be a good advocate for yourself. I am on sprycel at a lower dose nowtitrating down to whatever will hold my numbers, and give me the least complicatons..The good news about most of the newer drugs, like sprycel and ponatinib is they are so much more potent than gleevec and tasigna are, so less drug, can sometimes do the job well for some folks. I was on bosutinib, unfortunately it's the only drug that did nothing for me, I had bad side effects on it, and when I found out the cancer marched right through it for me, I stopped immediately and went back on sprycel, which at a low dose, works for me. A high dose is not an option for many. I have not tried ponatinib, but have heard good things from my oncologist that the people she is treating with it, on lowered doses, are in remission and are not suffering severe side effects. It does have the liver pancreas profile of possible side effects there, but like tasigna, it's just a personal thing how each drug affects us. I would encourage tou to work with your doc and come up with a plan to try one of the newer drugs and see how it goes. I have heard about DR PInella's idea about a vaccine. It is not yet an option, but you can read about the latest research at work for us on the LLS site, as well as Moffit'sas my friend is down there healing from a bone marrow transplant, she is in the clinic every day..I will ask her to look into Dr PInella's research and see where it stands currently. I will let you know what I find out! Take good care Susan, stay positive, this is another pot hole in the road, but you
Re: [CMLHope] Re: Hi
Dear Susan, I am so glad you are taking action..and it sounds like you have a great action place in place. Keep us posted and let us know how you are doing! Beth -Original Message- From: Susan Zimmerman rszim0...@aol.com To: cmlhope cmlhope@googlegroups.com Sent: Sat, Jul 20, 2013 9:17 am Subject: Re: [CMLHope] Re: Hi Thanks all so very much for the encouragement. I think I've made my decision about where to go, will contact Northwestern univ. on Monday to see a specialist who was recommended by Dr. Pinilla from Moffitt Cancer Center in Tampa (my former specialist). You have no idea how you've helped me just by your comments. After six years without medicine I needed a swift kick to get me DOING something about all this. As you say, Beth, help is out there but I just have not had the gumption to get going about it. Richard, your comments have also been so very helpful. Thanks again, 18's, Susan -Original Message- From: Richard H richard1huff...@comcast.net To: cmlhope cmlhope@googlegroups.com Sent: Sat, Jul 20, 2013 1:25 am Subject: Re: [CMLHope] Re: Hi You are spot on about having the right specialist. I am very fortunate to have an ONC that is a specialist in CML and he has at least one other CML specialist in rhe same group to concult with. Last year the total group became part of the latest desinated National Cancer Centers. Richard H.. On Friday, July 19, 2013 11:38:47 AM UTC-5, Beth wrote: Amen! Specialist who deal with CML and know the ins and outs of the disease and how to treat it are the way to go! I traveled to Oregon to see Dr. Druker and it helps me immensely. I Have found it's not a lack of concern of general oncologist, but a lack of experience with CML or the new drugs, or how they might be administered..for each unique person and theri circumstances. Sounds goodget off the a---..and get cooking. Help is out there.and we will cheer you on.I too need a swift kick in the pants some times to inspire me to further action. It's not an easy road..and sometimes we can be weary travelers...so we set and rest for atime..and then do something to inspire to get up and do what we can. we are here for you! Hang in there MIllie..I love that you are busy doing your crochetinglove ...Beth -Original Message- From: Susan Zimmerman rszi...@aol.com To: cmlhope cml...@googlegroups.com Sent: Fri, Jul 19, 2013 9:52 am Subject: Re: [CMLHope] Re: Hi Thanks so much, Beth!!! I'm getting on the phone this afternoon come hell or high water! Somebody that holds great weight with me told me to get off my a__ and get moving toward a specialist, so I guess I'll do it! 18's Susan -Original Message- From: bkbarney bkba...@aol.com To: cmlhope cml...@googlegroups.com Sent: Fri, Jul 19, 2013 11:18 am Subject: Re: [CMLHope] Re: Hi Dear Susan, So sorry you are struggling. But I am so glad you are listening to the warning sides of your body and paying attention. So often people override their own knowing or their doctors won't listen...You stay strong and be a good advocate for yourself. I am on sprycel at a lower dose nowtitrating down to whatever will hold my numbers, and give me the least complicatons..The good news about most of the newer drugs, like sprycel and ponatinib is they are so much more potent than gleevec and tasigna are, so less drug, can sometimes do the job well for some folks. I was on bosutinib, unfortunately it's the only drug that did nothing for me, I had bad side effects on it, and when I found out the cancer marched right through it for me, I stopped immediately and went back on sprycel, which at a low dose, works for me. A high dose is not an option for many. I have not tried ponatinib, but have heard good things from my oncologist that the people she is treating with it, on lowered doses, are in remission and are not suffering severe side effects. It does have the liver pancreas profile of possible side effects there, but like tasigna, it's just a personal thing how each drug affects us. I would encourage tou to work with your doc and come up with a plan to try one of the newer drugs and see how it goes. I have heard about DR PInella's idea about a vaccine. It is not yet an option, but you can read about the latest research at work for us on the LLS site, as well as Moffit'sas my friend is down there healing from a bone marrow transplant, she is in the clinic every day..I will ask her to look into Dr PInella's research and see where it stands currently. I will let you know what I find out! Take good care Susan, stay positive, this is another pot hole in the road, but you can and will figure out what the next best step is...it may take time to tweak your meds and get the numbers back in line, but it will happen...stay protective and proactive...thinking of you and all my fellow warriors...hope you all have a great weekend ahead~ Beth
Re: [CMLHope] Re: Hi
Hi Susan, I'm glad that you are going to get some help with your issues. I know that once you deal with them, it will make your life so much easier. I know that I feel that dealing with my liver problem is so much better then not knowing and worrying all of the time. We all face a lot of things with this CML. It's different, but the same because we all have to deal with what is. If we had a choice, it wouldn't be to have these problems, but here we areand you are right, connecting with others going through similar things helps us all. Right now, I'm worried about being on a forced vacation from my Tasigna, but have no choice until my Doctor can come up with something. I know that he will. I have such faith in this man and he has always come through for me. My other health issues are getting worse, but am trying to deal with them too. Marty always inspires me as I know that he's going through so much and still has such a positive attitude. I try, and usually succeed in doing that. When I get down, I try to think about all of my CML friends who are dealing with so many things..and know that each day I have is precious and that's always been something I try to remember. I try to take each day as it comes and be the happiest I can be and do things that make me happy. Today has been a rough one.Mostly pain in the left side of the middle section of my back radiating around to the side. I just couldn't get rid of the pain, and ended up back in bed with pain meds and put heat on it. Usually, laying down will ease it some. They (the doctors) don't seem to know what's causing it. My Oncologist seems to think it's my gall, but the others don't agree. I think he could be correct. To bad he isn't the one to make that decision. Today the pain came clear around to the front and I had to deal with it. I finally gave up and took a shower, came down, ate a little and took my pain meds again. I'm feeling better now, and will just go on and do something I like to do I finished one pillow case last night, but need to see if I have any white crochet thread to make an edging on it. I have a quilt done in blues, white, and yellowthat I only use for good. I am making these pillow cases to go with that, and have shams to finish up for it too. I know it's nuts, but doing these things, keeps me going (like the energizer bunny) and takes my mind off of everything else. You take care, my friend. I know that you're dealing with so much, so keep us informed. Our love, prayers, and hugs are coming your way. Millie -- -- [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/groups/opt_out.
Re: [CMLHope] Re: Hi
Hi Beth, I'm trying to catch up on my e-mails now, and that's always a nice thing to do as I get to read what everyone has written again. Sometimes, I miss things in the first reading and when I go back, find out something new. I know that you deal with more then most of usor different. It is surprising how these drugs work on each one of us in different ways. They have kept us alive though, and even though we have issues, at least we are here to try to deal with them. As I told Susan, I was having a bad day (with other issues), and finally got the pain under control, so now I'll find something to do that makes me happy. I took the day off from cooking, and everyone is on their own, or we might order out. Time will tell. I'd say we'd go out, but I no longer can get up from most chairs without a lot of help, and my son, Chris, has sciatica and so we're in really good shape. He can't sit for long, and is dealing with a lot of pain. So far, my husband is able to do the shopping and tries to help, but at 83...almost 84, he is very forgetful, and the three of us, right now, are laughing matters!!! If I don't laugh, I might cry, and I certainly don't want to do that. : I do keep everyone in my daily prayers. I know that each one of us deal with so many things, but we also have a great bond with one another, and that helps me, and I'm sure everyone else too. You take care of yourself, and let us hear from you often. Many hugs, and 18's as Marty says. I think it is a wonderful thing to celebrate life. Millie -- -- [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/groups/opt_out.
Re: [CMLHope] Re: Hi
Hi MartyHope that you're having a wonderful day in Pennsylvania. I wish I could get out, but today hasn't been wonderful. I'm dealing with a lot of pain, and now have it under control, so will enjoy the rest of my day the best way I can. I just wanted to touch base with you and tell you that you are never far from my thoughts. Lately, we have all come together in such a positive way. It sure helps having friends like the people in this group. I hope that we will all continue to be there for one another. I tried to download the site you said could connect us all. The name escapes me right now, but it wouldn't download it completely, and also wouldn't let me get rid of it all, so on Monday, I'll call my computer guy and see if he can get on here and fix everything I've messed up. He can do it from his office, so that makes our lives easier. I'll see if he can download it for meand correct whatever I did to mess things up. Usually, I'm pretty good at these things, but he has put things (walls) whatever, in here that prevent me from getting some pictures and also prevents my downloading some things, so perhaps that's what has happened. I'll keep trying until I get it right. You have a great weekend. God knew what he was doing when he put you into our lives. You inspire each and everyone of us with your life stories and just the way you look at things. I'm working on being that way. I will talk to you soon. Many hugs and 18's my friend, Millie -- -- [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/groups/opt_out.
Re: [CMLHope] Re: Hi
Hi Susan, Sure you may have your problems but the important thing is that you have decided to try and do something about them. You are no different then anyone else. Sometimes we just go through so much that we are terribly frightened to do anything about them because anything that is of the unknown always seems to frighten us. I want to tell you that you, Millie, Richard, Greenie and all of the rest of those even on different CML sites that are suffering from CML would probably not be here right now if it weren't for the TKI's that are out there now. You will see, mark my words, that there will be something coming soon that will rid you and everyone else of this terrible disease just like when the Polio vaccine got rid of Polio. Just like Penicillin and all of the rest of the antibiotics help with curing infections. I think that we all should take an example from Millie. She may have some debilitating things going on but she still keeps herself busy with making her pillow cases and shams and the like. She says that it is nuts, but is it really? She further says that, and I quote her exact words: *I know it's nuts, but doing these things, keeps me going (like the energizer bunny) and takes my mind off of everything else.* Enough said judge for yourself. Get doing things that you like, I guarantee that it will make you feel better. I always say that your mind is a very powerful tool, you just have to learn to use it in constructive ways. Now I'm not saying that it is going to cure you of any disease but you will feel better when your doing something that you enjoy. Isn't that what life is all about? Busy hands make happy minds. 18's, Marty On Sat, Jul 20, 2013 at 4:06 PM, C.M. Houtz ho...@ptd.net wrote: ** *Hi Susan,* ** *I'm glad that you are going to get some help with your issues. I know that once you deal with them, it will make your life so much easier. I know that I feel that dealing with my liver problem is so much better then not knowing and worrying all of the time. We all face a lot of things with this CML. It's different, but the same because we all have to deal with what is. If we had a choice, it wouldn't be to have these problems, but here we areand you are right, connecting with others going through similar things helps us all. Right now, I'm worried about being on a forced vacation from my Tasigna, but have no choice until my Doctor can come up with something. I know that he will. I have such faith in this man and he has always come through for me. My other health issues are getting worse, but am trying to deal with them too. Marty always inspires me as I know that he's going through so much and still has such a positive attitude. I try, and usually succeed in doing that. When I get down, I try to think about all of my CML friends who are dealing with so many things..and know that each day I have is precious and that's always been something I try to remember. I try to take each day as it comes and be the happiest I can be and do things that make me happy. Today has been a rough one.Mostly pain in the left side of the middle section of my back radiating around to the side. I just couldn't get rid of the pain, and ended up back in bed with pain meds and put heat on it. Usually, laying down will ease it some. They (the doctors) don't seem to know what's causing it. My Oncologist seems to think it's my gall, but the others don't agree. I think he could be correct. To bad he isn't the one to make that decision. Today the pain came clear around to the front and I had to deal with it. I finally gave up and took a shower, came down, ate a little and took my pain meds again. I'm feeling better now, and will just go on and do something I like to do* ** *I finished one pillow case last night, but need to see if I have any white crochet thread to make an edging on it. I have a quilt done in blues, white, and yellowthat I only use for good. I am making these pillow cases to go with that, and have shams to finish up for it too. I know it's nuts, but doing these things, keeps me going (like the energizer bunny) and takes my mind off of everything else.* ** *You take care, my friend. I know that you're dealing with so much, so keep us informed. Our love, prayers, and hugs are coming your way. Millie * -- -- [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
Re: [CMLHope] Re: Hi
Thanks and hats off to Marty and Millie. I realize I am no different, believe me. You guys haven't heard much about my life, and maybe I won't bore you with details today. But I do stay busy now doing the things I love. I just was slightly paralyzed about getting going to a specialist. I knew I must do that, and have researched many around the country over the years. A good kick in the butt by you blood brothers and sisters was exactly what I needed. I earned my theology degree at age 52 (year 2000), in Florida before we returned here to Indiana in 2010. Before moving to Fla., I also have done a lot of counseling to lay people and training of leaders over the years in the Christian element. Did a lot of public speaking for seventeen years within a parachurch organization. Worked for eleven years at what I called a social service agency within a large church. I coordinated all the volunteers to go to nursing homes, prisons, juvenile detention facilities, etc. Planned 3 or 4 trips a year to raise money for all this. Also had a list of shut-ins that we ministered to regularly. Did visitation to the hospitals as well. Still do that! The best part was giving food to the poor through the church. I couldn't wait to go to work each day! After that time period ended in my life I was still very active going on mission trips, conducting weekend marriage seminars, and marriage classes. Had gone into selling advertising for Christian organizations to make my living after the church thing was done. Now I do a lot of studying and hope to develop some teaching classes at our church, etc. I coordinate the prayer team at our church as well, and send out prayer requests by e-mail for two organizations. As I told Marcie, I love Israel and support them in any way I can. Sometimes our house also becomes a hotel as our friends and family pop in and out. So that's what keeps me busy, and other family things as well. To begin going back to doctors regularly again is beyond fun to think about, but the alternative is simply not acceptable. I really do thank God every day for each day and love Celebrating My Life!!! Oh, by the way, I asked Dr. Pinilla through e-mail about the vaccine he was working on, but he only answered me about his recommendation of medication and two docs he recommended. I guess I asked him too many questions for him to answer.totally understandable. Thanks again for all the encouragement, 18's, Susan F. Zimmerman Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you. Hab. 1:5 -Original Message- From: Marty Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Sat, Jul 20, 2013 4:38 pm Subject: Re: [CMLHope] Re: Hi Hi Susan, Sure you may have your problems but the important thing is that you have decided to try and do something about them. You are no different then anyone else. Sometimes we just go through so much that we are terribly frightened to do anything about them because anything that is of the unknown always seems to frighten us. I want to tell you that you, Millie, Richard, Greenie and all of the rest of those even on different CML sites that are suffering from CML would probably not be here right now if it weren't for the TKI's that are out there now. You will see, mark my words, that there will be something coming soon that will rid you and everyone else of this terrible disease just like when the Polio vaccine got rid of Polio. Just like Penicillin and all of the rest of the antibiotics help with curing infections. I think that we all should take an example from Millie. She may have some debilitating things going on but she still keeps herself busy with making her pillow cases and shams and the like. She says that it is nuts, but is it really? She further says that, and I quote her exact words: I know it's nuts, but doing these things, keeps me going (like the energizer bunny) and takes my mind off of everything else. Enough said judge for yourself. Get doing things that you like, I guarantee that it will make you feel better. I always say that your mind is a very powerful tool, you just have to learn to use it in constructive ways. Now I'm not saying that it is going to cure you of any disease but you will feel better when your doing something that you enjoy. Isn't that what life is all about? Busy hands make happy minds. 18's, Marty On Sat, Jul 20, 2013 at 4:06 PM, C.M. Houtz ho...@ptd.net wrote: Hi Susan, I'm glad that you are going to get some help with your issues. I know that once you deal with them, it will make your life so much easier. I know that I feel that dealing with my liver problem is so much better then not knowing and worrying all of the time. We all face a lot of things with this CML. It's different, but the same because we all
Re: [CMLHope] Re: Hi..Susan's Life
AWESOME Susan! That was very interesting. Keep on celebrating! What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Susan Zimmerman rszim0...@aol.com To: cmlhope@googlegroups.com Sent: Saturday, July 20, 2013 6:14:10 PM Subject: Re: [CMLHope] Re: Hi Thanks and hats off to Marty and Millie. I realize I am no different, believe me. You guys haven't heard much about my life, and maybe I won't bore you with details today. But I do stay busy now doing the things I love. I just was slightly paralyzed about getting going to a specialist. I knew I must do that, and have researched many around the country over the years. A good kick in the butt by you blood brothers and sisters was exactly what I needed. I earned my theology degree at age 52 (year 2000), in Florida before we returned here to Indiana in 2010. Before moving to Fla., I also have done a lot of counseling to lay people and training of leaders over the years in the Christian element. Did a lot of public speaking for seventeen years within a parachurch organization. Worked for eleven years at what I called a social service agency within a large church. I coordinated all the volunteers to go to nursing homes, prisons, juvenile detention facilities, etc. Planned 3 or 4 trips a year to raise money for all this. Also had a list of shut-ins that we ministered to regularly. Did visitation to the hospitals as well. Still do that! The best part was giving food to the poor through the church. I couldn't wait to go to work each day! After that time period ended in my life I was still very active going on mission trips, conducting weekend marriage seminars, and marriage classes. Had gone into selling advertising for Christian organizations to make my living after the church thing was done. Now I do a lot of studying and hope to develop some teaching classes at our church, etc. I coordinate the prayer team at our church as well, and send out prayer requests by e-mail for two organizations. As I told Marcie, I love Israel and support them in any way I can. Sometimes our house also becomes a hotel as our friends and family pop in and out. So that's what keeps me busy, and other family things as well. To begin going back to doctors regularly again is beyond fun to think about, but the alternative is simply not acceptable. I really do thank God every day for each day and love Celebrating My Life!!! Oh, by the way, I asked Dr. Pinilla through e-mail about the vaccine he was working on, but he only answered me about his recommendation of medication and two docs he recommended. I guess I asked him too many questions for him to answer.totally understandable. Thanks again for all the encouragement, 18's, Susan F. Zimmerman Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you. Hab. 1:5 -Original Message- From: Marty Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Sat, Jul 20, 2013 4:38 pm Subject: Re: [CMLHope] Re: Hi Hi Susan, Sure you may have your problems but the important thing is that you have decided to try and do something about them. You are no different then anyone else. Sometimes we just go through so much that we are terribly frightened to do anything about them because anything that is of the unknown always seems to frighten us. I want to tell you that you, Millie, Richard, Greenie and all of the rest of those even on different CML sites that are suffering from CML would probably not be here right now if it weren't for the TKI's that are out there now. You will see, mark my words, that there will be something coming soon that will rid you and everyone else of this terrible disease just like when the Polio vaccine got rid of Polio. Just like Penicillin and all of the rest of the antibiotics help with curing infections. I think that we all should take an example from Millie. She may have some debilitating things going on but she still keeps herself busy with making her pillow cases and shams and the like. She says that it is nuts, but is it really? She further says that, and I quote her exact words: I know it's nuts, but doing these things, keeps me going (like the energizer bunny) and takes my mind off of everything else. Enough said judge for yourself. Get doing things that you like, I guarantee that it will make you feel better. I always say that your mind is a very powerful tool, you just have to learn to use it in constructive ways. Now I'm not saying that it is going to cure you of any disease but you will feel better when your doing something that you enjoy. Isn't that what life is all about? Busy hands make happy minds. 18's, Marty On Sat, Jul 20, 2013 at 4:06 PM, C.M. Houtz ho...@ptd.net
Re: [CMLHope] Re: Hi
Hi Millie, You want to know something? No matter what you are and have been going through your still here and kicking. You Millie are just like that pink ever-ready bunny. You just keep going and going. You ended your last statement with *That's what we all do, so nothing new..!* * * *Well Millie, you your correct, that's what we all do, but there is something new. Another day!* * * *18's* * * *Marty* On Thu, Jul 18, 2013 at 11:11 PM, Richard H richard1huff...@comcast.netwrote: Sorry to hear about your new health challenge. I am adding you to my special list for prayers. I wll be praying for this to be a bump in the road and not a mountain to climb. Richard H. On Tuesday, July 16, 2013 9:59:14 AM UTC-5, millie wrote: *Hello to everyone. I didn't get on here yesterday as I was sick to my stomach (from what I don't know), and still have it a little today, but not as bad. I did see my Oncologist and he was able to get the results of my biopsy. Well, it is cirrhosis of the liver and so we have to deal with it. Since I've been on Tasigna for 6 years he is confused as this would normally happen during the first year on the drug, so we have to find out how to deal with it. He's going to call the people that make the drug and see what they can find out. Meanwhile, I'm off of the Tasigna until further notice. He did blood work, so he'll call me with the results when he gets them. He is also going to put me on the list for a liver transplant. I didn't think they would consider that at my age, and with my other health issues, but he says that they will. He works for Geisinger Hospital, which is huge in this area and they do lots of advanced things, so we shall see. I went to their new cancer clinic in Pottsville, and it was nice and brand new, so it was a pleasant experience. * ** *Your prayers, etc. will be appreciated. I just have to deal with what is. That's what we all do, so nothing new..! * ** *Talk to you soon.* *Many hugs,* *Millie* -- -- [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/groups/opt_out. -- -- [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/groups/opt_out.
Re: [CMLHope] Re: Hi
Hello all, Thanks so much for the inspiration, Millie, Marty, Richard and Beth! You guys are fantastic and I am suddenly most aware of your help and encouragement. Marcie has also helped amazingly with that! During the six years while not on gleevec against my doc's orders, I skipped over most cml google group posts as I was not dwelling on the illness, and I usually get about 200 e-mails a day. So I am not up on the latest thing. Thanks Pat Elliott for helping with direction on docs in certain cities. You are always johnny-on-the-spot and fulfilling your role s very well! I wish you all the very best. Now my numbers from the bcr/abl test were 23.8.horribly high, I know. However, after 15 days on lightest dose of tasigna, my right eye stopped moving with the left for a short time, giving me a warning signal about another stroke. Now I must find a specialist somewhere that will help me use some (maybe new?) medicine to bring those numbers down. Is anyone here on bosutinib or ponatinib??? Very interested to converse with you, if you are! Has anyone heard about the vaccination process that Moffitt in Tampa had told me years ago that was being worked on? They (Dr. Javier Pinilla) hoped six years ago that would lead to a cure. With all your encouragement and determination to enjoy every day, I am with ya! You all are absolutely fantastic as you each do your best to leave a positive word. I am hoping and praying I don't go into blast phase before something good happens. G_d is definitely in control, so no fear here! Praying for you all. 18's, Susan F. Zimmerman -Original Message- From: Marty Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Fri, Jul 19, 2013 5:29 am Subject: Re: [CMLHope] Re: Hi Hi Millie, You want to know something? No matter what you are and have been going through your still here and kicking. You Millie are just like that pink ever-ready bunny. You just keep going and going. You ended your last statement with That's what we all do, so nothing new..! Well Millie, you your correct, that's what we all do, but there is something new. Another day! 18's Marty On Thu, Jul 18, 2013 at 11:11 PM, Richard H richard1huff...@comcast.net wrote: Sorry to hear about your new health challenge. I am adding you to my special list for prayers. I wll be praying for this to be a bump in the road and not a mountain to climb. Richard H. On Tuesday, July 16, 2013 9:59:14 AM UTC-5, millie wrote: Hello to everyone. I didn't get on here yesterday as I was sick to my stomach (from what I don't know), and still have it a little today, but not as bad. I did see my Oncologist and he was able to get the results of my biopsy. Well, it is cirrhosis of the liver and so we have to deal with it. Since I've been on Tasigna for 6 years he is confused as this would normally happen during the first year on the drug, so we have to find out how to deal with it. He's going to call the people that make the drug and see what they can find out. Meanwhile, I'm off of the Tasigna until further notice. He did blood work, so he'll call me with the results when he gets them. He is also going to put me on the list for a liver transplant. I didn't think they would consider that at my age, and with my other health issues, but he says that they will. He works for Geisinger Hospital, which is huge in this area and they do lots of advanced things, so we shall see. I went to their new cancer clinic in Pottsville, and it was nice and brand new, so it was a pleasant experience. Your prayers, etc. will be appreciated. I just have to deal with what is. That's what we all do, so nothing new..! Talk to you soon. Many hugs, Millie -- -- [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/groups/opt_out. -- -- [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
Re: [CMLHope] Re: Hi
Dear Susan, So sorry you are struggling. But I am so glad you are listening to the warning sides of your body and paying attention. So often people override their own knowing or their doctors won't listen...You stay strong and be a good advocate for yourself. I am on sprycel at a lower dose nowtitrating down to whatever will hold my numbers, and give me the least complicatons..The good news about most of the newer drugs, like sprycel and ponatinib is they are so much more potent than gleevec and tasigna are, so less drug, can sometimes do the job well for some folks. I was on bosutinib, unfortunately it's the only drug that did nothing for me, I had bad side effects on it, and when I found out the cancer marched right through it for me, I stopped immediately and went back on sprycel, which at a low dose, works for me. A high dose is not an option for many. I have not tried ponatinib, but have heard good things from my oncologist that the people she is treating with it, on lowered doses, are in remission and are not suffering severe side effects. It does have the liver pancreas profile of possible side effects there, but like tasigna, it's just a personal thing how each drug affects us. I would encourage tou to work with your doc and come up with a plan to try one of the newer drugs and see how it goes. I have heard about DR PInella's idea about a vaccine. It is not yet an option, but you can read about the latest research at work for us on the LLS site, as well as Moffit'sas my friend is down there healing from a bone marrow transplant, she is in the clinic every day..I will ask her to look into Dr PInella's research and see where it stands currently. I will let you know what I find out! Take good care Susan, stay positive, this is another pot hole in the road, but you can and will figure out what the next best step is...it may take time to tweak your meds and get the numbers back in line, but it will happen...stay protective and proactive...thinking of you and all my fellow warriors...hope you all have a great weekend ahead~ Beth -Original Message- From: Susan Zimmerman rszim0...@aol.com To: cmlhope cmlhope@googlegroups.com Sent: Fri, Jul 19, 2013 6:48 am Subject: Re: [CMLHope] Re: Hi Hello all, Thanks so much for the inspiration, Millie, Marty, Richard and Beth! You guys are fantastic and I am suddenly most aware of your help and encouragement. Marcie has also helped amazingly with that! During the six years while not on gleevec against my doc's orders, I skipped over most cml google group posts as I was not dwelling on the illness, and I usually get about 200 e-mails a day. So I am not up on the latest thing. Thanks Pat Elliott for helping with direction on docs in certain cities. You are always johnny-on-the-spot and fulfilling your role s very well! I wish you all the very best. Now my numbers from the bcr/abl test were 23.8.horribly high, I know. However, after 15 days on lightest dose of tasigna, my right eye stopped moving with the left for a short time, giving me a warning signal about another stroke. Now I must find a specialist somewhere that will help me use some (maybe new?) medicine to bring those numbers down. Is anyone here on bosutinib or ponatinib??? Very interested to converse with you, if you are! Has anyone heard about the vaccination process that Moffitt in Tampa had told me years ago that was being worked on? They (Dr. Javier Pinilla) hoped six years ago that would lead to a cure. With all your encouragement and determination to enjoy every day, I am with ya! You all are absolutely fantastic as you each do your best to leave a positive word. I am hoping and praying I don't go into blast phase before something good happens. G_d is definitely in control, so no fear here! Praying for you all. 18's, Susan F. Zimmerman -Original Message- From: Marty Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Fri, Jul 19, 2013 5:29 am Subject: Re: [CMLHope] Re: Hi Hi Millie, You want to know something? No matter what you are and have been going through your still here and kicking. You Millie are just like that pink ever-ready bunny. You just keep going and going. You ended your last statement with That's what we all do, so nothing new..! Well Millie, you your correct, that's what we all do, but there is something new. Another day! 18's Marty On Thu, Jul 18, 2013 at 11:11 PM, Richard H richard1huff...@comcast.net wrote: Sorry to hear about your new health challenge. I am adding you to my special list for prayers. I wll be praying for this to be a bump in the road and not a mountain to climb. Richard H. On Tuesday, July 16, 2013 9:59:14 AM UTC-5, millie wrote: Hello to everyone. I didn't get on here yesterday as I was sick to my stomach (from what I don't know), and still have it a little today, but not as bad. I did see
Re: [CMLHope] Re: Hi
Thanks so much, Beth!!! I'm getting on the phone this afternoon come hell or high water! Somebody that holds great weight with me told me to get off my a__ and get moving toward a specialist, so I guess I'll do it! 18's Susan -Original Message- From: bkbarney bkbar...@aol.com To: cmlhope cmlhope@googlegroups.com Sent: Fri, Jul 19, 2013 11:18 am Subject: Re: [CMLHope] Re: Hi Dear Susan, So sorry you are struggling. But I am so glad you are listening to the warning sides of your body and paying attention. So often people override their own knowing or their doctors won't listen...You stay strong and be a good advocate for yourself. I am on sprycel at a lower dose nowtitrating down to whatever will hold my numbers, and give me the least complicatons..The good news about most of the newer drugs, like sprycel and ponatinib is they are so much more potent than gleevec and tasigna are, so less drug, can sometimes do the job well for some folks. I was on bosutinib, unfortunately it's the only drug that did nothing for me, I had bad side effects on it, and when I found out the cancer marched right through it for me, I stopped immediately and went back on sprycel, which at a low dose, works for me. A high dose is not an option for many. I have not tried ponatinib, but have heard good things from my oncologist that the people she is treating with it, on lowered doses, are in remission and are not suffering severe side effects. It does have the liver pancreas profile of possible side effects there, but like tasigna, it's just a personal thing how each drug affects us. I would encourage tou to work with your doc and come up with a plan to try one of the newer drugs and see how it goes. I have heard about DR PInella's idea about a vaccine. It is not yet an option, but you can read about the latest research at work for us on the LLS site, as well as Moffit'sas my friend is down there healing from a bone marrow transplant, she is in the clinic every day..I will ask her to look into Dr PInella's research and see where it stands currently. I will let you know what I find out! Take good care Susan, stay positive, this is another pot hole in the road, but you can and will figure out what the next best step is...it may take time to tweak your meds and get the numbers back in line, but it will happen...stay protective and proactive...thinking of you and all my fellow warriors...hope you all have a great weekend ahead~ Beth -Original Message- From: Susan Zimmerman rszim0...@aol.com To: cmlhope cmlhope@googlegroups.com Sent: Fri, Jul 19, 2013 6:48 am Subject: Re: [CMLHope] Re: Hi Hello all, Thanks so much for the inspiration, Millie, Marty, Richard and Beth! You guys are fantastic and I am suddenly most aware of your help and encouragement. Marcie has also helped amazingly with that! During the six years while not on gleevec against my doc's orders, I skipped over most cml google group posts as I was not dwelling on the illness, and I usually get about 200 e-mails a day. So I am not up on the latest thing. Thanks Pat Elliott for helping with direction on docs in certain cities. You are always johnny-on-the-spot and fulfilling your role s very well! I wish you all the very best. Now my numbers from the bcr/abl test were 23.8.horribly high, I know. However, after 15 days on lightest dose of tasigna, my right eye stopped moving with the left for a short time, giving me a warning signal about another stroke. Now I must find a specialist somewhere that will help me use some (maybe new?) medicine to bring those numbers down. Is anyone here on bosutinib or ponatinib??? Very interested to converse with you, if you are! Has anyone heard about the vaccination process that Moffitt in Tampa had told me years ago that was being worked on? They (Dr. Javier Pinilla) hoped six years ago that would lead to a cure. With all your encouragement and determination to enjoy every day, I am with ya! You all are absolutely fantastic as you each do your best to leave a positive word. I am hoping and praying I don't go into blast phase before something good happens. G_d is definitely in control, so no fear here! Praying for you all. 18's, Susan F. Zimmerman -Original Message- From: Marty Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Fri, Jul 19, 2013 5:29 am Subject: Re: [CMLHope] Re: Hi Hi Millie, You want to know something? No matter what you are and have been going through your still here and kicking. You Millie are just like that pink ever-ready bunny. You just keep going and going. You ended your last statement with That's what we all do, so nothing new..! Well Millie, you your correct, that's what we all do, but there is something new. Another day! 18's Marty On Thu, Jul 18, 2013 at 11:11 PM, Richard H richard1huff...@comcast.net wrote: Sorry to hear
Re: [CMLHope] Re: Hi
You are spot on about having the right specialist. I am very fortunate to have an ONC that is a specialist in CML and he has at least one other CML specialist in rhe same group to concult with. Last year the total group became part of the latest desinated National Cancer Centers. Richard H.. On Friday, July 19, 2013 11:38:47 AM UTC-5, Beth wrote: Amen! Specialist who deal with CML and know the ins and outs of the disease and how to treat it are the way to go! I traveled to Oregon to see Dr. Druker and it helps me immensely. I Have found it's not a lack of concern of general oncologist, but a lack of experience with CML or the new drugs, or how they might be administered..for each unique person and theri circumstances. Sounds goodget off the a---..and get cooking. Help is out there.and we will cheer you on.I too need a swift kick in the pants some times to inspire me to further action. It's not an easy road..and sometimes we can be weary travelers...so we set and rest for atime..and then do something to inspire to get up and do what we can. we are here for you! Hang in there MIllie..I love that you are busy doing your crochetinglove ...Beth -Original Message- From: Susan Zimmerman rszi...@aol.com javascript: To: cmlhope cml...@googlegroups.com javascript: Sent: Fri, Jul 19, 2013 9:52 am Subject: Re: [CMLHope] Re: Hi Thanks so much, Beth!!! I'm getting on the phone this afternoon come hell or high water! Somebody that holds great weight with me told me to get off my a__ and get moving toward a specialist, so I guess I'll do it! 18's Susan -Original Message- From: bkbarney bkba...@aol.com javascript: To: cmlhope cml...@googlegroups.com javascript: Sent: Fri, Jul 19, 2013 11:18 am Subject: Re: [CMLHope] Re: Hi Dear Susan, So sorry you are struggling. But I am so glad you are listening to the warning sides of your body and paying attention. So often people override their own knowing or their doctors won't listen...You stay strong and be a good advocate for yourself. I am on sprycel at a lower dose nowtitrating down to whatever will hold my numbers, and give me the least complicatons..The good news about most of the newer drugs, like sprycel and ponatinib is they are so much more potent than gleevec and tasigna are, so less drug, can sometimes do the job well for some folks. I was on bosutinib, unfortunately it's the only drug that did nothing for me, I had bad side effects on it, and when I found out the cancer marched right through it for me, I stopped immediately and went back on sprycel, which at a low dose, works for me. A high dose is not an option for many. I have not tried ponatinib, but have heard good things from my oncologist that the people she is treating with it, on lowered doses, are in remission and are not suffering severe side effects. It does have the liver pancreas profile of possible side effects there, but like tasigna, it's just a personal thing how each drug affects us. I would encourage tou to work with your doc and come up with a plan to try one of the newer drugs and see how it goes. I have heard about DR PInella's idea about a vaccine. It is not yet an option, but you can read about the latest research at work for us on the LLS site, as well as Moffit'sas my friend is down there healing from a bone marrow transplant, she is in the clinic every day..I will ask her to look into Dr PInella's research and see where it stands currently. I will let you know what I find out! Take good care Susan, stay positive, this is another pot hole in the road, but you can and will figure out what the next best step is...it may take time to tweak your meds and get the numbers back in line, but it will happen...stay protective and proactive...thinking of you and all my fellow warriors...hope you all have a great weekend ahead~ Beth -Original Message- From: Susan Zimmerman rszi...@aol.com javascript: To: cmlhope cml...@googlegroups.com javascript: Sent: Fri, Jul 19, 2013 6:48 am Subject: Re: [CMLHope] Re: Hi Hello all, Thanks so much for the inspiration, Millie, Marty, Richard and Beth! You guys are fantastic and I am suddenly most aware of your help and encouragement. Marcie has also helped amazingly with that! During the six years while not on gleevec against my doc's orders, I skipped over most cml google group posts as I was not dwelling on the illness, and I usually get about 200 e-mails a day. So I am not up on the latest thing. Thanks Pat Elliott for helping with direction on docs in certain cities. You are always johnny-on-the-spot and fulfilling your role s very well! I wish you all the very best. Now my numbers from the bcr/abl test were 23.8.horribly high, I know. However, after 15 days on lightest dose of tasigna, my right eye stopped moving with the left
[CMLHope] Re: Hi
Sorry to hear about your new health challenge. I am adding you to my special list for prayers. I wll be praying for this to be a bump in the road and not a mountain to climb. Richard H. On Tuesday, July 16, 2013 9:59:14 AM UTC-5, millie wrote: *Hello to everyone. I didn't get on here yesterday as I was sick to my stomach (from what I don't know), and still have it a little today, but not as bad. I did see my Oncologist and he was able to get the results of my biopsy. Well, it is cirrhosis of the liver and so we have to deal with it. Since I've been on Tasigna for 6 years he is confused as this would normally happen during the first year on the drug, so we have to find out how to deal with it. He's going to call the people that make the drug and see what they can find out. Meanwhile, I'm off of the Tasigna until further notice. He did blood work, so he'll call me with the results when he gets them. He is also going to put me on the list for a liver transplant. I didn't think they would consider that at my age, and with my other health issues, but he says that they will. He works for Geisinger Hospital, which is huge in this area and they do lots of advanced things, so we shall see. I went to their new cancer clinic in Pottsville, and it was nice and brand new, so it was a pleasant experience. * ** *Your prayers, etc. will be appreciated. I just have to deal with what is. That's what we all do, so nothing new..! * ** *Talk to you soon.* *Many hugs,* *Millie* -- -- [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/groups/opt_out.
Re: [CMLHope] Re: Hi Greenie
Yaho, Yes, he is Italian and I love him also. He will love you too. Tell him you know me. Good luck, Jeanie,3 In a message dated 7/20/2010 4:33:17 P.M. Pacific Daylight Time, nadia...@earthlink.net writes: Jeanie…..Thank you so much. I went to Moffit this morning and I see Dr Balducci on the 9th next months. I am so happy, because I can speak Italian whit Him. Thank you to all of you at CMLWarriors, you hare a real support take care Nadia -- [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
Re: [CMLHope] Re: Hi Greenie
Welcome Nadia, I think that your english is just fine. Frank In a message dated 7/5/2010 9:45:13 P.M. Eastern Daylight Time, nadia...@earthlink.net writes: Thank you so much to all of you. I read all yours mail every days, but never post because my poor English. You make me feel good and proud to be part of the CML Warriors. Merci. Nadia From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of C.M. Houtz Sent: Monday, July 05, 2010 7:46 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Re: Hi Greenie Hello Nadiia Welcome to our group. We do have a great bunch here, and everyone tries to help everyone else when we can. Glad you're joining usMillie - Original Message - From: _Nadiia Noles_ (mailto:nadia...@earthlink.net) To: _cmlh...@googlegroups.com_ (mailto:cmlhope@googlegroups.com) Sent: Monday, July 05, 2010 7:32 PM Subject: RE: [CMLHope] Re: Hi Greenie Hi Jeanie: My name is Nadia and I just moved to Florida in Winter Haven. I’d like to go to Moffit , but I don’t know the right Hematologist. Can you recommend yours? And if you can would you give me his name please? I’ve been diagnosed with CML since 8/2006, and am on Gleevac , 300/mg a day and feeling good. Thank you and thanks to all of you. Your mail has been a big help. Thanks From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of icandoall...@aol.com Sent: Monday, July 05, 2010 6:25 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Re: Hi Greenie Good luck on your move to Florida. I'm a Florida Cracker so I love it. What doctor will you go to in Florida. I go to Moffitt Cancer Center. Blessings, Jeanie3 In a message dated 7/2/2010 11:43:19 A.M. Pacific Daylight Time, myvet...@aol.com writes: Hi Suzieq, Port Richey is nice, we checked it out put my brother wants us to move his way. Sorry, we are not looking for a house. We are looking to rent, condo, etc. No more up keep, would like to find some folks in our age group. Not much into golf, but we do like to go fishing. Grace likes just to be near water and I like to check out the babes (smile). I'll be 71 on July 22nd, my body no's it's 71 but my mind thinks it's 21. We are selling all our belongings and just taking our cloths, and of course my fishing gear. This part is for the guys, one thing that did happen to me yesterday is my wife gives me a shot of testosterone every Wednesday. I've been back on the shots for almost two months. About 30 min. after my shot I started to get fatigue and I do mean fatigue, it lasted all day into the night. Then it went away almost as fast as it started. This is the third time in the last 2 months. I know this is not a women thing but maybe one of the guys out their may have had this same thing happen to them. I use to take a gel each day but that didn't do much for me, always had a lack of energy, etc. When I first started STI-571 in 2000 my study at Northwestern I was on the shots and never had a problem, now 9 years later something new. I still think that their are things out their that they don't know what side effects and others drugs will not mix with Gleevec. I called my nurse this morning and told her what happened and her reply was take the shot before bed time and sleep through the fatigue. WOMEN, they just don't understand us men. (smile) Greenie In a message dated 7/1/2010 4:11:15 P.M. Central Daylight Time, sheila.a.wat...@gmail.com writes: Greenie: If you want to live a little further up the coast line, my mom still has her house in Port Richey, Fl. It's north of Tampa off Hwy. 19. It's not far from Hudson Beach, so that's a plus. She still wants to sell it, if you're interested. It's not on the market right now. she plans to go back down in a few months and get it ready to list once again. Her house sits on a corner lot..has nice full size treesan extremely nice retired elderly couple across the street from her that always helps with anything she needs. Course, you'll might looking more for a condo or something.and be closer to your brother. This is a wee bit back up the other way. Anyway, just wanted to let you know. Are you'll gonna be going to do this just through the winter time and then go back up North in the summer months? Suzieq -- [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 -- [CMLHope] A support group of _http://cmlhope.com_ (http
Re: [CMLHope] Re: Hi group
Oh also, My cholesterol went way down on Gleevec. In a message dated 6/25/2010 9:43:30 A.M. Pacific Daylight Time, sheila.a.wat...@gmail.com writes: I've not been getting anything either, Greenie. Like Martin says, you probably just need to give it a good cleaning to get rid of some unwanted malware or trogan that you picked up somewhere. It's easy to do that without realizing. I use to use Noadware which cleaned off all the spyware cookies and such, but since having a problem with a program that was on my computer that interfered with internet service and just gave me general grief period, my son cleaned everything off and added Malwarebytes Anti-malware as well as Avast! Anti-virus and I just use all that frequently. It won't let me activate the Noadware program anymore, but it was a good program to use and simple. AVG is also a very good one to use as well. I use Facebook and have no problem. Just set your privacy controls and also block what or who you do not want. I do not know of any other CML'ers on there except maybe a couple from other countries. I, too, miss all our fellow CML survivors that use to post frequently here. It helped us all tremendously. I do hope they are doing well. I finally broke down and visited my doctor's nurse practitioner (primary doc.) who I was told is better than he is. I have to agree, I liked her very well. Told her what was going on with the pain in my side and wanting to schedule the colonoscopy to see what is going on, so it is set for the end of July. Everyone still thinks it's most likely Diversticulitis, which I do too. Along with not having a gall bladder. All the years since having that removed, I never once thought about my intestinal problems stemming from that. LOL!!! My mom being a nurse for many years (she's 81 now) came up with that saying that it seems that doctors quit giving their patients information on what not to eat after having their gall bladders removed like they did back in the earlier years such as fifties and sixties when she worked for our family doctor in one of the local clinics and hospitals. I had mine removed in '77 and they never told me one thing about certain foods causing digestive intestinal problems afterwards. Oh well, we live and learn, don't we? She did run blood work, and all really looked good. My total cholesterol is down to 190, I can remember back in fall of 2004 after being on Gleevec since Feb. of that year, it ran around 356 with my good being a high number. The reason he let me work on it through diet and stuff..but, I am pretty sure it's the Gleevec that has brought it down and under control. The only red flag I saw was my platelets were 182 and I need to get my last blood work done at my Hem./Onc. last Feb., cause I thought they were up around 240 something. Not sure why they've dropped like that if it's true. I see her the 12th of July, so am not concerned. If there is a problem, I know she'll catch it. Everyone have a great day. Suzieq -- [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 -- [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
Re: [CMLHope] Re: Hi group
Hi SusieQ, If it works don't fix it; That is what my doctor told me hehe. All the pills have some side effects, and I have been on all three so I know. I am at Moffitt Cancer Center now and I really like it although they were doing BMA every three months. They put me to sleep so it wasn't so bad. I finally got my o count and don't have to have them unless something else goes wrong. Good luck, Jeanie3 In a message dated 6/29/2010 7:11:11 A.M. Pacific Daylight Time, sheila.a.wat...@gmail.com writes: Sorry Greenie to hear this.but, you are right about some of these doctors that act like they do not care. Even after being on Gleevec since Feb. 2004, I still have a few showing up each time. My doctor told me that that was just the way it seems to be with me each time. Only twice have my tests come back negative. I counted up the doctors I went through in the beginning..5 different onc./hem. before getting to Dr. Cashen I kind of like her. She's the one who said I didn't have to have the BMB's unless a change in the drawn blood tests..for that, I loved her immediately. (smile) And, her nurse practitioner is even better...so, for now, I'm happy with my medical team. I do wonder sometimes if it would be worth it to try something different get off of Gleevec because of all the awful side effects, but then think, what if they didn't work for me, then what? I woke up this morning with the worse case of edema I've had in some time, but, I know it'll go down eventually. Just glad I didn't have to get up and leave early, (smile) You hang in there, I'm sure you'll find somebody up there who knows what they're doing. God bless you, Suziq -- [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
[CMLHope] Re: Hi Greenie
Greenie: If you want to live a little further up the coast line, my mom still has her house in Port Richey, Fl. It's north of Tampa off Hwy. 19. It's not far from Hudson Beach, so that's a plus. She still wants to sell it, if you're interested. It's not on the market right now. she plans to go back down in a few months and get it ready to list once again. Her house sits on a corner lot..has nice full size treesan extremely nice retired elderly couple across the street from her that always helps with anything she needs. Course, you'll might looking more for a condo or something.and be closer to your brother. This is a wee bit back up the other way. Anyway, just wanted to let you know. Are you'll gonna be going to do this just through the winter time and then go back up North in the summer months? Suzieq -- [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
[CMLHope] Re: Hi group
Sorry Greenie to hear this.but, you are right about some of these doctors that act like they do not care. Even after being on Gleevec since Feb. 2004, I still have a few showing up each time. My doctor told me that that was just the way it seems to be with me each time. Only twice have my tests come back negative. I counted up the doctors I went through in the beginning..5 different onc./hem. before getting to Dr. Cashen I kind of like her. She's the one who said I didn't have to have the BMB's unless a change in the drawn blood tests..for that, I loved her immediately. (smile) And, her nurse practitioner is even better...so, for now, I'm happy with my medical team. I do wonder sometimes if it would be worth it to try something different get off of Gleevec because of all the awful side effects, but then think, what if they didn't work for me, then what? I woke up this morning with the worse case of edema I've had in some time, but, I know it'll go down eventually. Just glad I didn't have to get up and leave early, (smile) You hang in there, I'm sure you'll find somebody up there who knows what they're doing. God bless you, Suziq -- [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
[CMLHope] Re: Hi group
Hi Greenie, We talked through e-mail a few years back I am from DeMotte, IN and was diagnosed coming up in August 5 years ago. I used to drive all the way to Mayo Clinic until a couple years ago Zavie had mentioned Dr. Talpz at the University of Michigan, he is now my doctor and is absolutely WONDERFUL! You are treated as a person and not just a number. When I go to see him I get atleast 20 minutes if not more of his time he always tells me of the new stuff they are working on and always goes over my concerns and doesn't leave the room until we've had a good discussion. My case is probably a little different than most I have been on 800 mgs since close to being diagnosed a year. The University is under 4 hours for us to drive, better than the 8 it used to take us to get to Mayo and to get my 2 minutes worth there and drive back! Dr. Talpaz was on the team that invented gleevec and tasigna and is doing a trial right now with gleevec and another drug (can't remeber the name, it's what they used at the very beginning~hydrea??? that kinda sounds right) and told me that when he can get the other drug for his patients for free through the pharmaceutical company he will let me in on this. He thinks it could be a cure, so we'll see. If there is anyway you could get up to see him I would highly advise it, you won't be sorry. I have his number if interested, just let me know! Take care! Sheila Hoffman dsh...@midwaynet.net On Jun 23, 10:30 am, myvet...@aol.com wrote: Hi, I've noticed the same thing about less mail. I had blood work at Northwestern Hosp. in Chicago June 2nd. and my new Doctor called me to let me know that cancer cells were showing up in my blood. I've been in a study beginning Feb 5, 2000 and now after all these years I'm having problems. She wants me back June 30 for more blood work, if their is no change then she wants to do a BMB. Of course she told me not to worry, yea sure. She said, their are other drugs out their that we can use. But she didn't know that I get my Gleevec for free from Northwestern. That I'm grand fathered in for life. Some of these Doctors have no idea what's going on, their in their own little world and don't have cancer. They just go to work each day, spend 3 min. with you in a room and out the door. Their are some good Doctor's out their that will listen but this one I have now, she's got to go. I'm going to ask for a different one on my next visit. Sorry lady, don't mean to hurt your feelings but you just don't understand. Greenie In a message dated 6/22/2010 4:39:21 P.M. Central Daylight Time, margoo...@aol.com writes: Hi Greenie: This is Marcie in Baltimore. I have not received any undesirable mail from you either. I'm a relative newcomer to the group. The main thing I notice is that there seems to be less traffic between all of us. Hope everyone is doing well. I was dx in March '09, 400 mg Gleevec, did well until February '10 and got bumped up to 600 mg. Getting used to the higher dose was just like starting out new, very difficult, but my numbers are greatly improved. I have needed red cell infusions due to the Gleevec and I just found out that my throid is out of whack, unrelated to the CML. All in all, I am so grateful to have an illness that is manageable. Best wishes to all of you and thanks for always being so supportive of our group. -Original Message- From: C.M. Houtz ho...@ptd.net To: cmlhope@googlegroups.com Sent: Tue, Jun 22, 2010 4:53 pm Subject: Re: [CMLHope] Hi group Hi GreenieHope that this finds you wellor as well as any of us can be. I haven't received any xxx rated mail from you. In fact my mail is working just fine. I get most of the things sent out, if not all. I went on facebook, but got off fast as I was getting unsolicited mail from different men, and this 71 year old lady doesn't need that. I actually didn't put my information out on it, but decided it wasn't something I wanted to participate in. I never did connect with any of the CML people. Oh wellHope that this gets through to you okay. Millie - Original Message - From: myvet...@aol.com To: CMLHope@googlegroups.com Sent: Saturday, June 19, 2010 7:53 AM Subject: [CMLHope] Hi group For some odd reason some sort of unwanted mail is going out to people in my address book. Some of the mail is mail that I wouldn't sent to anyone. I don't know how this happened but I must have received some spam, etc. I've reformatted my computer but that has not helped. I have friends that send me mail that I would not send out to anyone if you know what I mean. I've send them back telling them Not to send me anything that xxx rated. I hope that nothing like this has gone out to our CML web site. I seen to have stopped getting any mail from our CML site and I don't know why. greenie -- [CMLHope] A support
Re: [CMLHope] Re: Hi group
Thanks for your reply Suziq In a message dated 6/29/2010 9:11:07 A.M. Central Daylight Time, sheila.a.wat...@gmail.com writes: Sorry Greenie to hear this.but, you are right about some of these doctors that act like they do not care. Even after being on Gleevec since Feb. 2004, I still have a few showing up each time. My doctor told me that that was just the way it seems to be with me each time. Only twice have my tests come back negative. I counted up the doctors I went through in the beginning..5 different onc./hem. before getting to Dr. Cashen I kind of like her. She's the one who said I didn't have to have the BMB's unless a change in the drawn blood tests..for that, I loved her immediately. (smile) And, her nurse practitioner is even better...so, for now, I'm happy with my medical team. I do wonder sometimes if it would be worth it to try something different get off of Gleevec because of all the awful side effects, but then think, what if they didn't work for me, then what? I woke up this morning with the worse case of edema I've had in some time, but, I know it'll go down eventually. Just glad I didn't have to get up and leave early, (smile) You hang in there, I'm sure you'll find somebody up there who knows what they're doing. God bless you, Suziq -- [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 -- [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
Re: [CMLHope] Re: Hi group
Hi Sheila, I remember the name. How could I forget, my X-wife's name is Sheila. I have to stay with Northwestern because they are supplying me with the drug for free. BUT, if things change I would like to have their phone number. Thanks, Greenie In a message dated 6/29/2010 10:19:32 A.M. Central Daylight Time, dsh...@midwaynet.net writes: Hi Greenie, We talked through e-mail a few years back I am from DeMotte, IN and was diagnosed coming up in August 5 years ago. I used to drive all the way to Mayo Clinic until a couple years ago Zavie had mentioned Dr. Talpz at the University of Michigan, he is now my doctor and is absolutely WONDERFUL! You are treated as a person and not just a number. When I go to see him I get atleast 20 minutes if not more of his time he always tells me of the new stuff they are working on and always goes over my concerns and doesn't leave the room until we've had a good discussion. My case is probably a little different than most I have been on 800 mgs since close to being diagnosed a year. The University is under 4 hours for us to drive, better than the 8 it used to take us to get to Mayo and to get my 2 minutes worth there and drive back! Dr. Talpaz was on the team that invented gleevec and tasigna and is doing a trial right now with gleevec and another drug (can't remeber the name, it's what they used at the very beginning~hydrea??? that kinda sounds right) and told me that when he can get the other drug for his patients for free through the pharmaceutical company he will let me in on this. He thinks it could be a cure, so we'll see. If there is anyway you could get up to see him I would highly advise it, you won't be sorry. I have his number if interested, just let me know! Take care! Sheila Hoffman dsh...@midwaynet.net On Jun 23, 10:30 am, myvet...@aol.com wrote: Hi, I've noticed the same thing about less mail. I had blood work at Northwestern Hosp. in Chicago June 2nd. and my new Doctor called me to let me know that cancer cells were showing up in my blood. I've been in a study beginning Feb 5, 2000 and now after all these years I'm having problems. She wants me back June 30 for more blood work, if their is no change then she wants to do a BMB. Of course she told me not to worry, yea sure. She said, their are other drugs out their that we can use. But she didn't know that I get my Gleevec for free from Northwestern. That I'm grand fathered in for life. Some of these Doctors have no idea what's going on, their in their own little world and don't have cancer. They just go to work each day, spend 3 min. with you in a room and out the door. Their are some good Doctor's out their that will listen but this one I have now, she's got to go. I'm going to ask for a different one on my next visit. Sorry lady, don't mean to hurt your feelings but you just don't understand. Greenie In a message dated 6/22/2010 4:39:21 P.M. Central Daylight Time, margoo...@aol.com writes: Hi Greenie: This is Marcie in Baltimore. I have not received any undesirable mail from you either. I'm a relative newcomer to the group. The main thing I notice is that there seems to be less traffic between all of us. Hope everyone is doing well. I was dx in March '09, 400 mg Gleevec, did well until February '10 and got bumped up to 600 mg. Getting used to the higher dose was just like starting out new, very difficult, but my numbers are greatly improved. I have needed red cell infusions due to the Gleevec and I just found out that my throid is out of whack, unrelated to the CML. All in all, I am so grateful to have an illness that is manageable.Best wishes to all of you and thanks for always being so supportive of our group. -Original Message- From: C.M. Houtz ho...@ptd.net To: cmlhope@googlegroups.com Sent: Tue, Jun 22, 2010 4:53 pm Subject: Re: [CMLHope] Hi group Hi GreenieHope that this finds you wellor as well as any of us can be. I haven't received any xxx rated mail from you. In fact my mail is working just fine. I get most of the things sent out, if not all. I went on facebook, but got off fast as I was getting unsolicited mail from different men, and this 71 year old lady doesn't need that. I actually didn't put my information out on it, but decided it wasn't something I wanted to participate in. I never did connect with any of the CML people. Oh wellHope that this gets through to you okay. Millie - Original Message - From: myvet...@aol.com To: CMLHope@googlegroups.com Sent: Saturday, June 19, 2010 7:53 AM Subject: [CMLHope] Hi group For some odd reason some sort of unwanted mail is going out to people in my address book. Some of the mail is mail that I wouldn't sent to anyone. I don't know how this happened but I must have received some
Re: [CMLHope] Re: Hi group
Suzieq, it's always nice to hear from you. Thanks for the reply. Greenie In a message dated 6/25/2010 11:43:32 A.M. Central Daylight Time, sheila.a.wat...@gmail.com writes: I've not been getting anything either, Greenie. Like Martin says, you probably just need to give it a good cleaning to get rid of some unwanted malware or trogan that you picked up somewhere. It's easy to do that without realizing. I use to use Noadware which cleaned off all the spyware cookies and such, but since having a problem with a program that was on my computer that interfered with internet service and just gave me general grief period, my son cleaned everything off and added Malwarebytes Anti-malware as well as Avast! Anti-virus and I just use all that frequently. It won't let me activate the Noadware program anymore, but it was a good program to use and simple. AVG is also a very good one to use as well. I use Facebook and have no problem. Just set your privacy controls and also block what or who you do not want. I do not know of any other CML'ers on there except maybe a couple from other countries. I, too, miss all our fellow CML survivors that use to post frequently here. It helped us all tremendously. I do hope they are doing well. I finally broke down and visited my doctor's nurse practitioner (primary doc.) who I was told is better than he is. I have to agree, I liked her very well. Told her what was going on with the pain in my side and wanting to schedule the colonoscopy to see what is going on, so it is set for the end of July. Everyone still thinks it's most likely Diversticulitis, which I do too. Along with not having a gall bladder. All the years since having that removed, I never once thought about my intestinal problems stemming from that. LOL!!! My mom being a nurse for many years (she's 81 now) came up with that saying that it seems that doctors quit giving their patients information on what not to eat after having their gall bladders removed like they did back in the earlier years such as fifties and sixties when she worked for our family doctor in one of the local clinics and hospitals. I had mine removed in '77 and they never told me one thing about certain foods causing digestive intestinal problems afterwards. Oh well, we live and learn, don't we? She did run blood work, and all really looked good. My total cholesterol is down to 190, I can remember back in fall of 2004 after being on Gleevec since Feb. of that year, it ran around 356 with my good being a high number. The reason he let me work on it through diet and stuff..but, I am pretty sure it's the Gleevec that has brought it down and under control. The only red flag I saw was my platelets were 182 and I need to get my last blood work done at my Hem./Onc. last Feb., cause I thought they were up around 240 something. Not sure why they've dropped like that if it's true. I see her the 12th of July, so am not concerned. If there is a problem, I know she'll catch it. Everyone have a great day. Suzieq -- [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 -- [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
Re: [CMLHope] Re: Hi group
The Facebook group for CMLHope is http://www.facebook.com/pages/manage/#!/pages/CMLHopeCom/294037421385 http://www.facebook.com/pages/manage/#!/pages/CMLHopeCom/294037421385It has different messages from what is seen here in the Google Group. Rob On Fri, Jun 25, 2010 at 2:37 PM, Ana anab...@hotmail.com wrote: how can I use facebook to read these emails? -- From: Suzieq sheila.a.wat...@gmail.com Sent: Friday, June 25, 2010 6:43 PM To: CMLHope cmlhope@googlegroups.com Subject: [CMLHope] Re: Hi group I've not been getting anything either, Greenie. Like Martin says, you probably just need to give it a good cleaning to get rid of some unwanted malware or trogan that you picked up somewhere. It's easy to do that without realizing. I use to use Noadware which cleaned off all the spyware cookies and such, but since having a problem with a program that was on my computer that interfered with internet service and just gave me general grief period, my son cleaned everything off and added Malwarebytes Anti-malware as well as Avast! Anti-virus and I just use all that frequently. It won't let me activate the Noadware program anymore, but it was a good program to use and simple. AVG is also a very good one to use as well. I use Facebook and have no problem. Just set your privacy controls and also block what or who you do not want. I do not know of any other CML'ers on there except maybe a couple from other countries. I, too, miss all our fellow CML survivors that use to post frequently here. It helped us all tremendously. I do hope they are doing well. I finally broke down and visited my doctor's nurse practitioner (primary doc.) who I was told is better than he is. I have to agree, I liked her very well. Told her what was going on with the pain in my side and wanting to schedule the colonoscopy to see what is going on, so it is set for the end of July. Everyone still thinks it's most likely Diversticulitis, which I do too. Along with not having a gall bladder. All the years since having that removed, I never once thought about my intestinal problems stemming from that. LOL!!! My mom being a nurse for many years (she's 81 now) came up with that saying that it seems that doctors quit giving their patients information on what not to eat after having their gall bladders removed like they did back in the earlier years such as fifties and sixties when she worked for our family doctor in one of the local clinics and hospitals. I had mine removed in '77 and they never told me one thing about certain foods causing digestive intestinal problems afterwards. Oh well, we live and learn, don't we? She did run blood work, and all really looked good. My total cholesterol is down to 190, I can remember back in fall of 2004 after being on Gleevec since Feb. of that year, it ran around 356 with my good being a high number. The reason he let me work on it through diet and stuff..but, I am pretty sure it's the Gleevec that has brought it down and under control. The only red flag I saw was my platelets were 182 and I need to get my last blood work done at my Hem./Onc. last Feb., cause I thought they were up around 240 something. Not sure why they've dropped like that if it's true. I see her the 12th of July, so am not concerned. If there is a problem, I know she'll catch it. Everyone have a great day. Suzieq -- [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 -- [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 -- [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
[CMLHope] Re: Hi group
I've not been getting anything either, Greenie. Like Martin says, you probably just need to give it a good cleaning to get rid of some unwanted malware or trogan that you picked up somewhere. It's easy to do that without realizing. I use to use Noadware which cleaned off all the spyware cookies and such, but since having a problem with a program that was on my computer that interfered with internet service and just gave me general grief period, my son cleaned everything off and added Malwarebytes Anti-malware as well as Avast! Anti-virus and I just use all that frequently. It won't let me activate the Noadware program anymore, but it was a good program to use and simple. AVG is also a very good one to use as well. I use Facebook and have no problem. Just set your privacy controls and also block what or who you do not want. I do not know of any other CML'ers on there except maybe a couple from other countries. I, too, miss all our fellow CML survivors that use to post frequently here. It helped us all tremendously. I do hope they are doing well. I finally broke down and visited my doctor's nurse practitioner (primary doc.) who I was told is better than he is. I have to agree, I liked her very well. Told her what was going on with the pain in my side and wanting to schedule the colonoscopy to see what is going on, so it is set for the end of July. Everyone still thinks it's most likely Diversticulitis, which I do too. Along with not having a gall bladder. All the years since having that removed, I never once thought about my intestinal problems stemming from that. LOL!!! My mom being a nurse for many years (she's 81 now) came up with that saying that it seems that doctors quit giving their patients information on what not to eat after having their gall bladders removed like they did back in the earlier years such as fifties and sixties when she worked for our family doctor in one of the local clinics and hospitals. I had mine removed in '77 and they never told me one thing about certain foods causing digestive intestinal problems afterwards. Oh well, we live and learn, don't we? She did run blood work, and all really looked good. My total cholesterol is down to 190, I can remember back in fall of 2004 after being on Gleevec since Feb. of that year, it ran around 356 with my good being a high number. The reason he let me work on it through diet and stuff..but, I am pretty sure it's the Gleevec that has brought it down and under control. The only red flag I saw was my platelets were 182 and I need to get my last blood work done at my Hem./Onc. last Feb., cause I thought they were up around 240 something. Not sure why they've dropped like that if it's true. I see her the 12th of July, so am not concerned. If there is a problem, I know she'll catch it. Everyone have a great day. Suzieq -- [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
[CMLHope] Re: Hi Millie, my onc just put me on Tasigna; need your input
Hi Jeanie: Let me know how you do on the Tasigna, and I'll try to keep you up on my progress. It's nice to have people to talk to about these things. Good Luck with it all.I'll keep you in my prayers.Millie - Original Message - From: [EMAIL PROTECTED] To: CMLHope@googlegroups.com Sent: Tuesday, September 23, 2008 4:21 PM Subject: [CMLHope] Re: Hi Millie, my onc just put me on Tasigna; need your input Hi Millie and thanks for the quick input. I'm so happy you are doing good on Tasigna. I am looking forward to feeling better also. I am trying now to get the drug through my insurance; has to have preapproval. The onc gave me a 7 day starter kit. Thanks again. I am taking it at 5 AM and 5 PM. I am awake early so it doesn't bother me. It will soon be time for my second dose. Hang in there Millie. You sound like a warrior to me. Blessings, Jeanie3 In a message dated 9/22/2008 5:12:58 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: Hi Jeanie.I was scared to death and didn't want to take it, mostly because I do have a heart condition. At any rate, I had 3 EKG's in the first few weeks and just had another one recently and they've been fine. My cardiologist knew nothing about this Tasigna, but learned and is 100% for it. I am feeling better then I have in years and none of the side effects I had with Gleevec like diarrhea, water retention, weight gain, and on and on. I just saw my Oncologist today and he is so pleased with me. My blood work is perfect and I'll see him again in 6 weeks when he'll run the test for the Philadelphia T Cell thing. I'm hoping for the best and will let you know. I am happy today, and that's what counts, right? I didn't take a vacation from one before starting the other. Good luckand let me know how you're doing. I'll keep you in my prayers..Millie P.S. It took me a couple of weeks to get the Tasigna through my local Rite Aid Drug Store.so I did stay on the Gleevec until then. - Original Message - -- Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi Millie, my onc just put me on Tasigna; need your input
Hi Millie and thanks for the quick input. I'm so happy you are doing good on Tasigna. I am looking forward to feeling better also. I am trying now to get the drug through my insurance; has to have preapproval. The onc gave me a 7 day starter kit. Thanks again. I am taking it at 5 AM and 5 PM. I am awake early so it doesn't bother me. It will soon be time for my second dose. Hang in there Millie. You sound like a warrior to me. Blessings, Jeanie3 In a message dated 9/22/2008 5:12:58 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: Hi Jeanie.I was scared to death and didn't want to take it, mostly because I do have a heart condition. At any rate, I had 3 EKG's in the first few weeks and just had another one recently and they've been fine. My cardiologist knew nothing about this Tasigna, but learned and is 100% for it. I am feeling better then I have in years and none of the side effects I had with Gleevec like diarrhea, water retention, weight gain, and on and on. I just saw my Oncologist today and he is so pleased with me. My blood work is perfect and I'll see him again in 6 weeks when he'll run the test for the Philadelphia T Cell thing. I'm hoping for the best and will let you know. I am happy today, and that's what counts, right? I didn't take a vacation from one before starting the other. Good luckand let me know how you're doing. I'll keep you in my prayers..Millie P.S. It took me a couple of weeks to get the Tasigna through my local Rite Aid Drug Store.so I did stay on the Gleevec until then. - Original Message - **Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. (http://www.walletpop.com/?NCID=emlcntuswall0001) --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi Millie, my onc just put me on Tasigna; need your input
Hi Jeanie.I was scared to death and didn't want to take it, mostly because I do have a heart condition. At any rate, I had 3 EKG's in the first few weeks and just had another one recently and they've been fine. My cardiologist knew nothing about this Tasigna, but learned and is 100% for it. I am feeling better then I have in years and none of the side effects I had with Gleevec like diarrhea, water retention, weight gain, and on and on. I just saw my Oncologist today and he is so pleased with me. My blood work is perfect and I'll see him again in 6 weeks when he'll run the test for the Philadelphia T Cell thing. I'm hoping for the best and will let you know. I am happy today, and that's what counts, right? I didn't take a vacation from one before starting the other. Good luckand let me know how you're doing. I'll keep you in my prayers..Millie P.S. It took me a couple of weeks to get the Tasigna through my local Rite Aid Drug Store.so I did stay on the Gleevec until then. - Original Message - From: [EMAIL PROTECTED] To: CMLHope@googlegroups.com Sent: Monday, September 22, 2008 4:04 PM Subject: [CMLHope] Hi Millie, my onc just put me on Tasigna; need your input Hi Millie, I just got back from my Onc's office visit. He put me on Tasigna; I was wanting Sprycel, but this is what he recommended. I need to know what to expect. Did you clean out the Gleevec before starting the Tasigna? As you can see, I'm a little nervous about the new drug. He wants EKG every week. Thanks for all you input. Blessings, Jeanie3 In a message dated 9/17/2008 2:06:00 P.M. Pacific Daylight Time, [EMAIL PROTECTED] writes: Hi Jeanie.Just on my way out to take my Tasigna, but it can wait a moment. I then will start supper and that will give me time to wait the extra hour. It's not difficult, once I started. No, I didn't need the EKG's every day, but probably once a week, for a while. They just did another one yesterday, but it's been a while since I had one. Everything is great with that. I've noticed a few things since on the new med. I don't have the weight gain, or the swelling (water), and don't miss it at all. On Gleevec I had diarrhea and that seems to be gone too. I feel my life is so much better. Please let me know what your doctor decides for you. As I said before, I don't know why he switched me.just said the Gleevec wasn't working as well as he wanted it too. You're in my thoughts and prayers. Millie - Original Message - From: [EMAIL PROTECTED] To: CMLHope@googlegroups.com Sent: Wednesday, September 17, 2008 4:52 PM Subject: [CMLHope] Re: CML HAS GONE INTO ACCELERATED PHASE to millie Hi Millie and thanks so much for your prayers and uplifting note. Did you go into accelerated phase when he switched you? On the Tasigna, did you have to have cardiograms daily? Yes, that would be hard; I remember taken an antibiotic that had to be taken on an empty stomach; hard to time it. I am just waiting for my Dr to call and tell me what he wants to do. I think they are still doing cytogenics on the test and they aren't ready yet. I'm 70, and am still hanging in there. I noticed my left leg was swelling today, and that has never happened to me before. I do know some of our cml'ers have swelling. Also the front of leg is hurting. Blessings to you and your e-mail has helped me so much. Jeanie3 In a message dated 9/16/2008 1:48:48 P.M. Pacific Daylight Time, [EMAIL PROTECTED] writes: Hi Jeanie3 I've been reading some of the messages you've posted and know that you are having a time with it all. Just recently my meds had to be changed. You might laugh, but my Onc. of 15 yrs and I have decided that I don't need to know everything and it works best for me. If it's something I must know, he'll tell me. All I know is that my Gleevec wasn't working for me anymore. He switched me to Tasigna and , although I worried a lot about the side effects, things have worked out for me. I'm not having nearly as many side affects and that's a good thing. The hardest part about taking it is doing it every 12 hours and trying to fit my meals in so that I can do this. It has ended up that I have to set the alarm for 5:00 A.M. and take my meds then, and that's fine. You can't eat 2 hours prior, or an hour after taking the meds. At any rate this has worked out for me. I'm due to take it in about 15 min. and then will start working on my supper for the day. I do have a heart condition too...I have a Pace Maker..just had a new one put in a few months ago. All in all am doing well for a 69 yr. old. I am in a wheel chair and walker, do to other problems, but am not giving up the fight. You take care and know that we're all out there keeping up with what you're dealing
[CMLHope] Re: hi potassium in blood? to suzzie
Hi Suzzie, the same thing happened to me. I took the med for the high potassium and was sick all weekend but all the doctors were gone until Tues. I hope your platelets will be good. Blessings, Jeanie3 In a message dated 8/31/2008 9:54:13 A.M. Pacific Daylight Time, [EMAIL PROTECTED] writes: Hi Jeanie: I see everyone talking about different hospitals etc. I live in N.J.,and I have been to a few hospitals in NJ well they were deciding if I could get a BMT. Now thats back in 99.I really did not want one for fear of GVHD, and my doctors said NO because I had no match, and it just made my percentages worse to survive. My oncologist is a very good doctor, but I think he is getting older. He is still trying to handle what he did when he was younger, and personally I think its too much for him now. I never received the slips to go for further testing, and when I called his office I got the answering service. They are gone till Tues. for the holiday. I will just enjoy my weekend, and handle it next week. Everyone has been so kind, and answering my questions the best they can. Thank You for your prayers also. I do have a strong faith, and I have to keep believing there is a reason why I am still here. God Bless You Suzzie **It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv000547) --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: hi potassium in blood? to suzzie
Hi Jeanie: I see everyone talking about different hospitals etc. I live in N.J.,and I have been to a few hospitals in NJ well they were deciding if I could get a BMT. Now thats back in 99.I really did not want one for fear of GVHD, and my doctors said NO because I had no match, and it just made my percentages worse to survive. My oncologist is a very good doctor, but I think he is getting older. He is still trying to handle what he did when he was younger, and personally I think its too much for him now. I never received the slips to go for further testing, and when I called his office I got the answering service. They are gone till Tues. for the holiday. I will just enjoy my weekend, and handle it next week. Everyone has been so kind, and answering my questions the best they can. Thank You for your prayers also. I do have a strong faith, and I have to keep believing there is a reason why I am still here. God Bless You Suzzie --- On Fri, 8/29/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: [CMLHope] Re: hi potassium in blood? to suzzie To: CMLHope@googlegroups.com Date: Friday, August 29, 2008, 10:16 AM Hi Suzzie and so sorry to hear about your platelets. Mine are just the opposite; too high. The only time I had low platelets was in the beginning and they took me off all meds until they came back up. How are your WBC? Are you going to Moffit? I have been having a big problem with my potassium, to high. My PP was very concerned and said I might have to go into the hospital if they can't bring it down; well it came down, but they had me take more meds and it has made nauseous. I can't remember the name but it is a sweet liquid. I wonder why we have to tell our oncs what is happening to us; it seems they should be on it, but I know, I just had a visit with my Onc and I wanted him to do a PCR or something, and he said just wait until the potassium problem was solved; bottom line; after I left his office, I felt he had done nothing for me; no advice or etc. My WBC is 15 and I think he should have at least addressed that problem. I will keep you in my prayers, so hang in there Warrior and let me know what's happening, Blessings, Jeanie3 In a message dated 8/28/2008 9:39:50 A.M. Pacific Daylight Time, [EMAIL PROTECTED] writes: Hi Jeanie: We need to pray for each other. I am having a bad day too. My Platelet count is dropping steadily month bymonth. My Oncologist never picked-up on this, and I had to send him a Fax to show him the pattern. Now he wants me to get more testing. I need someone who has had this problem. You have been through so much yourself. Who would be a good one to ask. I sent a message to Trey, because one of the girls told me he probably could help. Suzzie It's only a deal if it's where you want to go. Find your travel deal here. --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: hi potassium in blood? to suzzie
Hi Frank: Thank You for your prayers, and I will keep you in mine also. I lived in South River, therefore, I know exactly where Kendall Park is. We moved to South Jersey after we got married. The homes were cheaper down here. Keep in Touch and Take Care. --- On Sun, 8/31/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: [CMLHope] Re: hi potassium in blood? to suzzie To: CMLHope@googlegroups.com Date: Sunday, August 31, 2008, 2:34 PM Hi Suzzie, I live in central New Jersey my onc. is Dr. Stephen Young whom I have a lot of confidence in. Having had two cancers I know what it is dealing with doctors office staffs that sometimes drop the ball when we need help. I was diagnosed with CML in June 2005 have been taking 400 mil of Gleevec all along. Lately some of my blood work has been a little off but my doctor keeps a close watch on what's going on with me. In regards to the BMT, I was diagnosed at age 62 a little to old for it. The good lord has taken care of me as he is taking care of you I'll pray for you and the rest of my brothers sisters that's fighting the good fight. God bless Frank M, Kendall Pk, N.J. In a message dated 8/31/2008 12:54:14 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: Hi Jeanie: I see everyone talking about different hospitals etc. I live in N.J.,and I have been to a few hospitals in NJ well they were deciding if I could get a BMT. Now thats back in 99.I really did not want one for fear of GVHD, and my doctors said NO because I had no match, and it just made my percentages worse to survive. My oncologist is a very good doctor, but I think he is getting older. He is still trying to handle what he did when he was younger, and personally I think its too much for him now. I never received the slips to go for further testing, and when I called his office I got the answering service. They are gone till Tues. for the holiday. I will just enjoy my weekend, and handle it next week. Everyone has been so kind, and answering my questions the best they can. Thank You for your prayers also. I do have a strong faith, and I have to keep believing there is a reason why I am still here. God Bless You Suzzie --- On Fri, 8/29/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: [CMLHope] Re: hi potassium in blood? to suzzie To: CMLHope@googlegroups.com Date: Friday, August 29, 2008, 10:16 AM Hi Suzzie and so sorry to hear about your platelets. Mine are just the opposite; too high. The only time I had low platelets was in the beginning and they took me off all meds until they came back up. How are your WBC? Are you going to Moffit? I have been having a big problem with my potassium, to high. My PP was very concerned and said I might have to go into the hospital if they can't bring it down; well it came down, but they had me take more meds and it has made nauseous. I can't remember the name but it is a sweet liquid. I wonder why we have to tell our oncs what is happening to us; it seems they should be on it, but I know, I just had a visit with my Onc and I wanted him to do a PCR or something, and he said just wait until the potassium problem was solved; bottom line; after I left his office, I felt he had done nothing for me; no advice or etc. My WBC is 15 and I think he should have at least addressed that problem. I will keep you in my prayers, so hang in there Warrior and let me know what's happening, Blessings, Jeanie3 In a message dated 8/28/2008 9:39:50 A.M. Pacific Daylight Time, [EMAIL PROTECTED] writes: Hi Jeanie: We need to pray for each other. I am having a bad day too. My Platelet count is dropping steadily month bymonth. My Oncologist never picked-up on this, and I had to send him a Fax to show him the pattern. Now he wants me to get more testing. I need someone who has had this problem. You have been through so much yourself. Who would be a good one to ask. I sent a message to Trey, because one of the girls told me he probably could help. Suzzie It's only a deal if it's where you want to go. Find your travel deal here. --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: hi potassium in blood? to suzzie
Hi Suzzie and so sorry to hear about your platelets. Mine are just the opposite; too high. The only time I had low platelets was in the beginning and they took me off all meds until they came back up. How are your WBC? Are you going to Moffit? I have been having a big problem with my potassium, to high. My PP was very concerned and said I might have to go into the hospital if they can't bring it down; well it came down, but they had me take more meds and it has made nauseous. I can't remember the name but it is a sweet liquid. I wonder why we have to tell our oncs what is happening to us; it seems they should be on it, but I know, I just had a visit with my Onc and I wanted him to do a PCR or something, and he said just wait until the potassium problem was solved; bottom line; after I left his office, I felt he had done nothing for me; no advice or etc. My WBC is 15 and I think he should have at least addressed that problem. I will keep you in my prayers, so hang in there Warrior and let me know what's happening, Blessings, Jeanie3 In a message dated 8/28/2008 9:39:50 A.M. Pacific Daylight Time, [EMAIL PROTECTED] writes: Hi Jeanie: We need to pray for each other. I am having a bad day too. My Platelet count is dropping steadily month bymonth. My Oncologist never picked-up on this, and I had to send him a Fax to show him the pattern. Now he wants me to get more testing. I need someone who has had this problem. You have been through so much yourself. Who would be a good one to ask. I sent a message to Trey, because one of the girls told me he probably could help. Suzzie **It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv000547) --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: hi potassium in blood?
Hi Jeanie: We need to pray for each other. I am having a bad day too. My Platelet count is dropping steadily month bymonth. My Oncologist never picked-up on this, and I had to send him a Fax to show him the pattern. Now he wants me to get more testing. I need someone who has had this problem. You have been through so much yourself. Who would be a good one to ask. I sent a message to Trey, because one of the girls told me he probably could help. Suzzie --- On Tue, 8/26/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: [CMLHope] hi potassium in blood? To: CMLHope@googlegroups.com Date: Tuesday, August 26, 2008, 11:14 AM Hi all, I just found out I have high potassium counts in my blood. My dr was concerned and called in a prescription. Has anyone else had this? Thanks and Blessings. Also my WBC was 15 not good. Jeanie3 It's only a deal if it's where you want to go. Find your travel deal here. --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: hi potassium in blood?
No, unfortunately I have consistently low blood potassium and calcium. On Aug 26, 11:14 am, [EMAIL PROTECTED] wrote: Hi all, I just found out I have high potassium counts in my blood. My dr was concerned and called in a prescription. Has anyone else had this? Thanks and Blessings. Also my WBC was 15 not good. Jeanie3 **It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv000547) --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: hi potassium in blood?
In a message dated 8/26/2008 6:42:54 P.M. Pacific Daylight Time, [EMAIL PROTECTED] writes: Hi I was wondering about that. My PP is talking about putting me in the hospital for it. I'm going to see my onc tomorrow and see what he says. Thanks a lot, Blessings Jeanie3 You can read about excess potassium issues (also called Hyperkalemia) at this link: http://en.wikipedia.org/wiki/Hyperkalemia Hyperkalemia can be associated with kidney issues, so you should ask your doc to check for any kidney issues. It can also occur when a person has high platelets, as you have had recently. There is also a Pseudohyperkalemia (false high reading) that can be caused by excessive fist clenching during blood draw or having a tournequet too tight or on for too long: Pseudohyperkalemia is a rise in the amount of potassium that occurs due to excessive leakage of potassium from cells, during or after blood is drawn. It is a laboratory artifact rather than a biological abnormality and can be misleading to caregivers. Pseudohyperkalemia is typically caused by hemolysis during venipuncture (by either excessive vacuum of the blood draw or by a collection needle that is of too fine a gauge); excessive tournequet time or fist clenching during phlebotomy (which presumably leads to efflux of potassium from the muscle cells into the bloodstream); or by a delay in the processing of the blood specimen. It can also occur in specimens from patients with abnormally high numbers of platelets (1,000,000/mm³), leukocytes ( 100 000/mm³), or erythrocytes (hematocrit 55%). People with leakier cell membranes have been found, whose blood must be separated immediately to avoid pseudohyperkalemia. **It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv000547) --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: hi potassium in blood?
In a message dated 8/26/2008 8:28:31 A.M. Pacific Daylight Time, [EMAIL PROTECTED] writes: I only had a high potassium level when I followed an athlete's recommendation and took a potassium supplement to ease the muscle cramping caused by Gleevec. I only took ONE pill a day, yet it really shot my potassium up. My onc. asked me to cease taking them. Angie Hi Angie, I always make sure I eat bananas because I thought we needed more Potassium. He gave me something to take it out of my blood; it was liquid and you have to take it every 3 hours for 3 doses. yukk it wasn't good. Then he called me this moring and said it had gone up again 7.7 and to come in for another test. I told him I wanted to wait and see if the meds worked first. Then he said I might have to be put in the hospital; go figure. Thanks for you input. Blessings3 Jeanie3 **It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv000547) --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: hi potassium in blood?
You can read about excess potassium issues (also called Hyperkalemia) at this link: http://en.wikipedia.org/wiki/Hyperkalemia Hyperkalemia can be associated with kidney issues, so you should ask your doc to check for any kidney issues. It can also occur when a person has high platelets, as you have had recently. There is also a Pseudohyperkalemia (false high reading) that can be caused by excessive fist clenching during blood draw or having a tournequet too tight or on for too long: Pseudohyperkalemia is a rise in the amount of potassium that occurs due to excessive leakage of potassium from cells, during or after blood is drawn. It is a laboratory artifact rather than a biological abnormality and can be misleading to caregivers. Pseudohyperkalemia is typically caused by hemolysis during venipuncture (by either excessive vacuum of the blood draw or by a collection needle that is of too fine a gauge); excessive tournequet time or fist clenching during phlebotomy (which presumably leads to efflux of potassium from the muscle cells into the bloodstream); or by a delay in the processing of the blood specimen. It can also occur in specimens from patients with abnormally high numbers of platelets (1,000,000/mm³), leukocytes ( 100 000/mm³), or erythrocytes (hematocrit 55%). People with leakier cell membranes have been found, whose blood must be separated immediately to avoid pseudohyperkalemia. --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: hi potassium in blood?
I swear we have some amazing people in our group. The information that we receive from this web-site is unreal. I myself have no idea what I would do if Rob would have not started it. I get more information here then I could ever get from any Doctor. Thank you Rob. You hate to call the Doctor you feel like your a pest, and you always get his or her nurse. But here you can vent and you will get an helpful respond from someone. Greenie **It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv000547) --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi Zavie maybe we're twins hehe
HAPPY BIRTHDAY ALL YOU MAY BABIES. Good luck with your new meds Skip. Blessings, Jeanie3 In a message dated 5/9/2008 1:26:13 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: Gosh my Birthday is in May as well the 30th..Happy B'day to us May babies now that I have a note going Zavie suggested I tell you all what is going on with me... As of today I started Dasatinib.. at 100mg a day. My doctor said (holding his Hand at approx the 6ft level) when I first met you your cml was at this level, now after Gleevec and nilotinib your at this level (holding his hand approx 18 inches from the floor. But he said I cannot increase your dose of Nilotinib as it attacks your pancreas, so I am switching you to Dasatinib. If this does not work, I can always switch you back to nilotinib at 400mg a day. My doctor want to see if he can get my leukemia down lower. I had a BMA B done last week heart monitor etc.. I will need blood samples with all kinds of different blood samples for at least 6 weeks. My Doctor's hope is that I could reduce the amout of Platelet and Hgb that I receive every week. So anyone that is now on either Gleevec, or Nilotinib take heart Dasatinib is or could be the winner if not well always can go back when it is approved in Canada, now if my doctor could have increased the dose to 600mg a day he may have stayed with nilotinib but the company have strict rules governing their drugs on trial. So for now I am as of today on Dasatinib at 100 mg a day (expensive little bugger too, thank God for my insurance) One of my Doctors said they were using me as a test case for people who have survived long time CML (not sure how many years he means as long term survivor LOL) Be safe all and be kind to each other. SkipD Dx 30 years ago **Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. (http://food.aol.com/dinner-tonight?NCID=aolfod000301) --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi Zavie maybe we're twins hehe
In a message dated 5/9/2008 9:24:40 A.M. Eastern Daylight Time, I CAN DO ALL TTC writes: Hi Zavie and yes my birthday is in May. I'll be 70; it has been a wonderful 70 years. We are going to celebrate with a big dinner with all the family. I was doing so good and then all of a sudden my blood went haywire. I'm a warrior and I'm hanging in there. I'll be getting a PCR soon, and I'll let you know what happens. Blessings, Jeanie3 **Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. (http://food.aol.com/dinner-tonight?NCID=aolfod000301) --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi Zavie maybe we're twins hehe
Gosh my Birthday is in May as well the 30th..Happy B'day to us May babies now that I have a note going Zavie suggested I tell you all what is going on with me... As of today I started Dasatinib.. at 100mg a day. My doctor said (holding his Hand at approx the 6ft level) when I first met you your cml was at this level, now after Gleevec and nilotinib your at this level (holding his hand approx 18 inches from the floor. But he said I cannot increase your dose of Nilotinib as it attacks your pancreas, so I am switching you to Dasatinib. If this does not work, I can always switch you back to nilotinib at 400mg a day. My doctor want to see if he can get my leukemia down lower. I had a BMA B done last week heart monitor etc.. I will need blood samples with all kinds of different blood samples for at least 6 weeks. My Doctor's hope is that I could reduce the amout of Platelet and Hgb that I receive every week. So anyone that is now on either Gleevec, or Nilotinib take heart Dasatinib is or could be the winner if not well always can go back when it is approved in Canada, now if my doctor could have increased the dose to 600mg a day he may have stayed with nilotinib but the company have strict rules governing their drugs on trial. So for now I am as of today on Dasatinib at 100 mg a day (expensive little bugger too, thank God for my insurance) One of my Doctors said they were using me as a test case for people who have survived long time CML (not sure how many years he means as long term survivor LOL) Be safe all and be kind to each other. SkipD Dx 30 years ago --- [EMAIL PROTECTED] wrote: In a message dated 5/9/2008 9:24:40 A.M. Eastern Daylight Time, I CAN DO ALL TTC writes: Hi Zavie and yes my birthday is in May. I'll be 70; it has been a wonderful 70 years. We are going to celebrate with a big dinner with all the family. I was doing so good and then all of a sudden my blood went haywire. I'm a warrior and I'm hanging in there. I'll be getting a PCR soon, and I'll let you know what happens. Blessings, Jeanie3 **Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. (http://food.aol.com/dinner-tonight?NCID=aolfod000301) Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi I'm New and have a couple of questions
Sorry to hear about Vanessa. I was diagnosed in April of 04 and put on 400mg of gleevec and have been in remission for almost two years now. My blood counts go up and down but now stay within safe guidelines. As has been mentioned Gleevec can cause some side effects, but some people have them worst then others. In my experience I had allot of swelling around the eyes, but that has nearly gone away. Vanessa may go through some nausea, and bone pain, and fatigue,or she may not, it seems the drug effects people differently. The one great thing about Gleevec is it works and can help her have a very long life. My doctor has pretty much ruled out me having to get a bone marrow transplant as long as the Gleevec maintains my remission. I think the main reason they placed her on a higher dosage was the level her WBC was when they found the disease. It is awesome to see you are being so supportive, keep it up because that is what she will need. I know my doctor stressed that aspect of living with CML. She will need support, because with CML many of us do not look sick on the outside, and many people do not really understand what having a chronic disease means. I mentioned Gleevec allowing her to live a long life, a good example is what my doctor explained to my fiance when she went on her first doctor visit with me. He told her of a patient he has that was diagnosed in his early twenties. This was before Gleevec was available so he told that patient he would most likely live 4 to six years tops. Well that patient was treated with what was available, and when Gleevec came out, my doctor put him on it. That same patient is now my age, which is 39, and is showing no signs of going anywhere anytime soon. To make a long story short. Gleevec has given him, myself, and many others a very good chance of living a long relatively normal life. The life expectancy went from 4 to 6 years to 15 to 20 years. My doctor also explained with advances coming down the pike that the outlook for people with CML is very bright. It may have been mentioned but I cannot stress enough the importance of having a doctor that is knowledgeable about CML, and shows compassion. I fired my first doctor, basically because he was clueless about CML, and could not even tell me what to expect while taking Gleevec. So if her doctor is treating her well as a person and is understanding, keep them. If not look else where. The main thing is to keep doing what your doing...being supportive, and giving her your love. I know it can be scary, but hang in there, I believe you will have her around for a very long time. Take care, Terry On 7/9/06, mburwen [EMAIL PROTECTED] wrote: It is common for some blood counts (especially WBC and Platelets) tooscillate a bit during the first few months on Gleevec.I assume your wife is being tested every month at this stage, so you will be able totrack the blood counts. The initial dose of Gleevec, whether 400,600, or 800, is Dr.s' choice.I'd say it is more usual to start on 400 because, the Dr.s sometimes want to see how well you handle the drug,but there is a lot of evidence to suggest higher doses are moreeffective.You really aren't going to know for sure for severalmonths. Since you are new here, I'll repeat my oft-repeated mantra again.Thatis, make sure that you have a Dr. that is a CML expert on your medicalteam.Mike Burwen --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi I'm New and have a couple of questions
Looks like you have gotten losts of responses already. I started out on 400mg/daily or Gleevec. After 6 months, the dosage was up'd to 600mg/daily. My oncologist said that 600mg was the optimal dosage. I wish you and your wife great success with Gleevec. It does have a lot of side effects, but it has been a true miracle for me and many others with CML. --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi I'm New and have a couple of questions
Steve, I don't have much more to add than what everyone else has said. I was diagnosed in June/06. I was put on Allopurinol for two weeks, and started 400 mg of Gleevec a few days after the Allopurinol. In the beginning I was a little more tired than usual, and experienced some heartburn which is also a side effect of both medications. But I have been blessed to have no other side effects. After one month of being on Gleevec both my WBC and platelets have dropped significantly. I agree with the others that you need to have an Oncologist that is very experienced in what your wife has. My Dr. has been involved in alot of Research and he is so easy to communicate with. Best of luck to your wife. Having a supportive husband is a good thing. I am blessed on that part too. Caron --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi I'm New and have a couple of questions
Many of us who have CML do not have a normal blood count. Gleevec is an outside regulator that cannot duplicate the internal regulators perfectly, but it often gets close enough. You might call our blood count status CML normal, because it is normal enough for a healthy life, but would look odd otherwise. You can expect continual fluctuations in blood counts over many months or longer. But the first rule is don't panic over the temporary lows and highs. It is better to watch longer term trends, and only take action when absolutely necessary. Reference Mike Burwen's advice above about CML experts, because most Oncologists deal so much with other cancers that they do not understand CML very well. Some will panic and pull a patient off Gleevec prematurely. That is necessary sometimes, but often waiting for the next couple blood counts will show improvement. There are also WBC boosters available if the counts go too low and stay there. For instance, my Onc said she would not worry unless my WBC count stayed well below 2,000. Staying on Gleevec is very important, if at all possible. It is also a good idea to keep your own chart of blood counts to show trends, which is helpful when talking with the Onc. While the WBC is low, one should avoid cuts and wash any skin breaks well. Keep hands washed and avoid sick people (good luck with that). But generally, even with CML, the body can usually respond to illness by making more good WBC when needed. Vanessa sounds like she is having a relatively normal response to 600mg. Gleevec is a powerful drug, and that power is not always perfectly directed. Watch the long term trends and don't panic. She can always reduce to 400mg or get WBC booster shots if counts do not stabilize. --Trey dx Oct 2005 --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi I'm New and have a couple of questions
Thanks for the response Rob, we don t know that. Vanessa has another Bone Marrow Biopsy in just over a week to check that cheers steve --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi I'm New and have a couple of questions
All thank you so much for the responses so far, it is great to have an opportunity to share with with people that truely understand. thanks Steve --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi I'm New and have a couple of questions
It is common for some blood counts (especially WBC and Platelets) to oscillate a bit during the first few months on Gleevec. I assume your wife is being tested every month at this stage, so you will be able to track the blood counts. The initial dose of Gleevec, whether 400, 600, or 800, is Dr.s' choice. I'd say it is more usual to start on 400 because, the Dr.s sometimes want to see how well you handle the drug, but there is a lot of evidence to suggest higher doses are more effective. You really aren't going to know for sure for several months. Since you are new here, I'll repeat my oft-repeated mantra again. That is, make sure that you have a Dr. that is a CML expert on your medical team. Mike Burwen --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi I'm New and have a couple of questions
Welcome to the group.The higher doses of Gleevec have had good results. What percentage Philidelphia did she have?RobOn 7/8/06, Priesty [EMAIL PROTECTED] wrote: HiI'm Steve and my wife Vanessa was diagnosed with CML 4 weeks ago. Ifound CML Hope on the net last night and it looks like a terrificsupport network. Vanessa's WBC count was 250,000 she was treated with Interferon and once the Philadelphia Chromozone was detected putstraight onto 600Mg of Gleevec. Her WBC last week was at 5200 which wasterrific, but now she is down to 2,000.Has anyone else experienced this with Gleevec that the WBC drops below the normal levels before normalising and how long did it take tonormalise?The other question is around doseage of Gleevec. I gather there aresome proponents of 400Mg to start with, but Vanessa was put straight onto 600Mg. Is this common?Let me knowthanksStevehttp://neworleansemail.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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi I'm New and have a couple of questions
Hi Steve,I'm sorry to hear about Vaessa. I was diagnosed in Feb., 2003. To give you some simple answers. Yes, it is common to begin with 600 or 800 mg of Gleevec. The theory is that the quicker a patient achieves remission, the better the long term outcome. Most people take, on average, 18 months to reach this point. Yes, it is also common for the WBC counts to dip when first starting Gleevec and then rebound, but only slightly. My WBC bounces between 3,000 and 4,000 regularly. Some people get normal counts. What is really important is the Absolute Neutrophil Count or ANC. Vanessa's oncologist should follow this as it is determined by a formula using the WBC and Neutrophil percentage. I'm sure he will not let her WBC drop below 1,000. I hope this helps.Richard TroxelAge 62, LA Calif. dx 2/2003 pcru 9/2004 --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi - I am new
Gayle, Welcome. You will get lots of good information from this group. You did not mention your Mother's age. Many people here have had good results on Gleevec, including me. I have been on a trial since 1999 and have continually decreasing counts of Ph+ cells. It is not a cure, but for most has worked wonderfully well. There are documented side effects and low blood counts is one of them. Usually the dose can be altered to help the situation. Others include diarrhea episodes, eye bleeds, thin skin that tears easily, puffy eyes, etc. Most of the time the problems are minor compared to those from medications before Gleevec existed. Doctors with lots of experience with Gleevec can usually handle these problems. Best wishes to you and your Mom. Gay Bratton -Original Message- From: CMLHope@googlegroups.com [mailto:[EMAIL PROTECTED] On Behalf Of disneyprincess Sent: Thursday, June 08, 2006 5:20 AM To: CMLHope Subject: [CMLHope] Hi - I am new My mother was diagnosed with CML last week. She is into her 2nd week in the hospital due to a very high platelet count which they can't seem to get under control. I joined this group to gather information about cml and I am sure once she is out of the hospital she will join as well. They aren't yet treating it but were talking about using Gleevex. She has been on Hydroxy for the platelets and so far has had 3 plasmaferesis treatments to get the platelets down. Yesterday her white count dropped so they did not give her a dose last night. In addition, 6 years ago she developed 2 lung embolisms which were treated. Because she isn't getting better and is continuing to have seizure like episodes, blacking out and losing her bodily functions, they are now looking to make sure she does not have any blood clots in her system. Gayle --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi - I am new/Sandy
Thank you so much for your wishes for my mom. She is 73. Gayle --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi - I am new/Gay
Thank you for that information. This is going to be a big learning experience for our family. Today they took the catheter out of her neck as her platelets seem to have stablilized at about 650,000 for the past two days, still too high but the medication seems to be kicking in. Has anyone here had passing out associated either with high platelets before they were under control? Gayle --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi - I am new/Rob
Thanks so much for your best wishes. Gayle --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi - I am new/Anjana
When my mom had her lung embolisms they never mentioned anything about high platelets. Gayle --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: HI
Hi Rosie, Like it has been said, welcome to the group that no one wants to join. As my doctor said when I was diagnosed 2-13-02, you have won the lottery. Problem is this is not the lottery you wanted to win. I have that somewhat of a strange twist, I too work for a company that makes Radiation Treatment Planning systems but none of the software we create deals with blood disorders. However I did find that I have many resorces available to me through my company because of what we do. So keep that in mind. At the very least your co-workers will be able ot point you in the right direction. As said before, you are now part of (unfortunately) a group that have more knowledge than we ever wanted to know, so ask your question because I am sure that someone here will at least know where to send you to get more information. This sight for sure can help you if you have any side effects. How much Gleevec we you started on? I was dx on 2-13-02, started 400mg gleevec on 3-11-02, went to 600mg 10-15-04 and joined the zero club (973 I think) 4-15-05 ( 5 days before my 45 bday). Good luck and remember we are all here for each other and together we will all get through this! John Rosie wrote: I not very good at this. I am 47 yrs and was just offically diagnosed last Thursday. I started on Gleevec on Friday. I just went to the Dr for a yearly phyiscal and surprise my WBCs were out of the ballpark. 98% of my cell were positive for BCR/ABL. The somewhat strange twist to this is that I have been working in clinical research in oncology for the last 7yrs. Only in solid tumor so this is very new to me. --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi everyone!
Renee, Welcome to the zero club. I believe I am number 973. You did what took me 3 plus years to achieve. Great job!!! I would say the rerason your siblings have not been tested is that Gleevec is doing such a great job. If you feel better know this information then ask your doctor about it. Don't wait for them. I was diagnosed 2-13-02 (age 41, April bday) and had my 4 siblings tested that summer (however none were a good match) and went to the global donor list and found several good matches. That always made me feel good to know this. But then again when I was DX, Gleevec was on the market for less than 4 months so the doctors continue to make sure backups were in place. In fact, my bone marrow transplant doctor had me go through a stem cell harvest last summer (after I reached the zero club) as a back up for myself. This way if anything turns south, I can atleast put myself back at ground zero (at least that is the idea). On the side effects, talk to your doctor about taking something for the acid reflux. I did in the beginning and now take nexium (purple pill) and that problem has gone away. As far as the other side effects, hang in there because they will get better. I am now 4 plus years with dealing with them and the episodes are happening further and futher apart. (Many good posts here about things to help with the side effects.) Remember (unfortunately) you are not alone and together we will all get through this. John Renee wrote: I am 41 years old. I was diagnosed with CML 2 years ago. In 2004, the cytogenetics test was positive for 19 of 20 cells and the FISH test was positve for 200 of 200 cells. I went on 400mg of Gleevec daily and after 6 months increased to 600mg daily. I have a lot of the same side effects as others: nausea, diarrhea, muscle cramps, water retention, loss of appetite, some changes in my complexion and hair, lack of energy, acid reflux, etc... In 2005, when I had my 2nd bone marrow biopsy, my cytogenetics test shows 0 of 20, FISH showed 0 of 200, and PCR showed 0 of 10,000 cells positive. So after one year on Gleevec, I had what my doctor called an excellent remission of the CML. I have to agree after reading some of the other posts. I feel very fortunate to have responded so well to Gleevec. My next bone marrow biopsy is coming up soon - June 22, 2006. My oncologist has not said anything about testing any of my siblings (for compatibility) for possible bone marrow transplant. In the back of my mind, I keep wondering when I will stop responding to the Gleevec or when my doctor is going to start pressing me toward getting the bone marrow transplant. --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: HI
Welcome, Rosie. to the club no one wants to join!A lot of good people here and a lot of good information, both scientific and anecdotal, to help you through. Do be shy about asking anything, we've been through it all, when you look at us collectively. Richard Troxeldx 2/2003On 6/6/06, Rosie [EMAIL PROTECTED] wrote:I not very good at this.I am 47 yrs and was just offically diagnosed last Thursday. I started on Gleevec on Friday.I just went to the Drfor a yearly phyiscal and surprise my WBCs were out of the ballpark.98% of my cell were positive for BCR/ABL.The somewhat strange twist to this is that I have been working in clinical research in oncologyfor the last 7yrs.Only in solid tumor so this is very new to me. --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: HI
Welcome to the group.RobOn 6/6/06, Rosie [EMAIL PROTECTED] wrote: I not very good at this.I am 47 yrs and was just offically diagnosedlast Thursday. I started on Gleevec on Friday.I just went to the Drfor a yearly phyiscal and surprise my WBCs were out of the ballpark. 98% of my cell were positive for BCR/ABL.The somewhat strange twistto this is that I have been working in clinical research in oncologyfor the last 7yrs.Only in solid tumor so this is very new to me. -- Powered by NewOrleansEmail.Com http://neworleansemail.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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi Rob
There are several new drugs BMS-354825 and AMN-107 are the two that are currently the best known. BMS-354825 is dasatinib which has been shown in clinical trials to be more effective than Gleevec and has much fewer side effects. It is expected to be approved by FDA in the next 4 to 6 weeks and will be available by prescription at that time. There are clinical trials ongoing currently which would be an option for CML patients who need to get on the drug before FDA approval. There is a link to all of the latest CML trials at the top of the page at http://cmlhope.comIn addition to the BMS and AMN drugs there are other drugs in the pipeline as well. RobOn 4/28/06, Joseph Cancemi [EMAIL PROTECTED] wrote: I saw your post on the new treatment about to be approved for Gleevec resistent cml patients. What is that new drug called? Thanks, JC -- Powered by NewOrleansEmail.Com http://neworleansemail.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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
