Re: [CMLHope] Just wondering if anyone has gone through unrelated bmt for cml...
I was told you have to be cancer free for like 3 to 5 years otherwise you risk the chance of antirejection for kidney transplant bringing back the cml. I am seeing my nephrologist on Fri. She wants me to go for a consult in Pgh or wherever I want. I had my transplant at johns hopkins, but I have read where Cleveland Clinic is top for kidney transplants. It's just the farthest away from home. I know it will be nothing like my 90 some day stay in Baltimore. I'm just worried about risk of rejection. That is why I saved that as a last resort for bmt. I just kept thinking try the meds, they are working on more stuff. It will buy me time. Just such a stressful situation after so much I have dealt with. Will keep you posted and will most likely be asking for more advise and opinions. Thanks! Have a great day! Terri In a message dated 7/30/2013 9:54:25 A.M. Eastern Daylight Time, wa2...@gmail.com writes: Hi Terry, Nice to see you here on this forum. I was wondering what happened to you. Sorry to hear about your kidney problems. I also have kidney failure and am on dialysis. All of this started over 23 years ago from all of the chemo and radiation I had for my bone marrow transplant and as time went by my kidneys got worse and worse. You may want to look into a kidney transplant in spite of you dealing with your CML. I think that you would probably be a candidate even though you have CML. I know that if you had any strokes or a heart attack then you would probably not be able to get a kidney transplant. No matter what, you need to get on some kidney transplant lists. If you have a live donor that is willing to donate to you then you need to have them tested as soon as possible. Just so you know there are some hospitals that have a program that if they do not match you they can still donate and in turn you will get someone else's kidney. So far I am on four lists but I also have a possible live donor. I am in Pennsylvania for the summer and once I get back to Florida I will pursue this. If I can ever help you just let me know Hang in there Terry. 18's (Symbol for life) Marty On Tue, Jul 30, 2013 at 9:28 AM, <_TEDBDD@aol.com_ (mailto:ted...@aol.com) > wrote: TheresaI haven't gone through it, but I think you have a strong case. Press on! Tom in KY In a message dated 7/30/2013 9:25:03 A.M. Eastern Daylight Time, _Terrijeff20@aol.com_ (mailto:terrijef...@aol.com) writes: Hello, I was diagnosed in May of 2000. Started on interferon and arac. Moved on to experimental drugs, Gleevec, Sprycel, Tasigna. in and out of remission until 2011. Everything quit working and I had to go with transplant at Johns Hopkins. They were terrific. I was put on disability. So now I am two years out and just became eligible for Medicare on June 1. I called to get drug coverage and they calculated the cost. Two days later I received a cessation of benefits, stating cml is in remission. I should be able to get a sedentary stress free job. In the meantime starting Feb, I developed headaches and high blood pressure. Creatinine went up. I was referred to a nephrologist with a gfr of 40%. I had a kidney biopsy showing glomulersclerosis. 65% of my kidneys are dead and dried up, this damage as I understand is irreversible. Since then I have dropped twice to 11% gfr and currently am at 21% which puts me at stage 4 chronic kidney disease. Severe function loss. Has anyone else dealt with this? I'm looking at poss transplant which they don't even know if I qualify as I am only 2 yrs remission from cml. I still take 800 mg tasigna daily to prevent it from coming back. So my other option is to prepare for dialysis. I am only 45 yrs old. Had to hire a lawyer to help with ssd, no guarantees he says. Just a lot to deal with all of a sudden. Would love to speak with someone who has gone through this or knows of anyone. Thanks, Theresa Migut Johnstown, Pa -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ---
Re: [CMLHope] Just wondering if anyone has gone through unrelated bmt for cml...
Hi Terry, Nice to see you here on this forum. I was wondering what happened to you. Sorry to hear about your kidney problems. I also have kidney failure and am on dialysis. All of this started over 23 years ago from all of the chemo and radiation I had for my bone marrow transplant and as time went by my kidneys got worse and worse. You may want to look into a kidney transplant in spite of you dealing with your CML. I think that you would probably be a candidate even though you have CML. I know that if you had any strokes or a heart attack then you would probably not be able to get a kidney transplant. No matter what, you need to get on some kidney transplant lists. If you have a live donor that is willing to donate to you then you need to have them tested as soon as possible. Just so you know there are some hospitals that have a program that if they do not match you they can still donate and in turn you will get someone else's kidney. So far I am on four lists but I also have a possible live donor. I am in Pennsylvania for the summer and once I get back to Florida I will pursue this. If I can ever help you just let me know Hang in there Terry. 18's (Symbol for life) Marty On Tue, Jul 30, 2013 at 9:28 AM, wrote: > ** > TheresaI haven't gone through it, but I think you have a strong case. > Press on! Tom in KY > > In a message dated 7/30/2013 9:25:03 A.M. Eastern Daylight Time, > terrijef...@aol.com writes: > > Hello, > > I was diagnosed in May of 2000. Started on interferon and arac. Moved on > to experimental drugs, Gleevec, Sprycel, Tasigna. in and out of remission > until 2011. Everything quit working and I had to go with transplant at > Johns Hopkins. They were terrific. I was put on disability. So now I am two > years out and just became eligible for Medicare on June 1. I called to get > drug coverage and they calculated the cost. Two days later I received a > cessation of benefits, stating cml is in remission. I should be able to get > a sedentary stress free job. > > In the meantime starting Feb, I developed headaches and high blood > pressure. Creatinine went up. I was referred to a nephrologist with a gfr > of 40%. I had a kidney biopsy showing glomulersclerosis. 65% of my kidneys > are dead and dried up, this damage as I understand is irreversible. Since > then I have dropped twice to 11% gfr and currently am at 21% which puts me > at stage 4 chronic kidney disease. Severe function loss. > > Has anyone else dealt with this? I'm looking at poss transplant which they > don't even know if I qualify as I am only 2 yrs remission from cml. I still > take 800 mg tasigna daily to prevent it from coming back. So my other > option is to prepare for dialysis. I am only 45 yrs old. > > Had to hire a lawyer to help with ssd, no guarantees he says. Just a lot > to deal with all of a sudden. Would love to speak with someone who has gone > through this or knows of anyone. > > Thanks, > Theresa Migut > Johnstown, Pa > > -- > -- > [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. > > > -- -- [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 uns
Re: [CMLHope] Just wondering if anyone has gone through unrelated bmt for cml...
Hi Theresa, I also live in PA, only in the Eastern part of the state. I know people that have got it with a lot less wrong, so my advice is to find a lawyer that just does SS and I'm sure you could get it. Sometimes it takes 3 or 4 tries to get it. I know it isn't easy, but you need to keep pushing them and get it. They always say no the first time. You probably will need a doctor to back you up on what your health issues are. Please keep in touch and let us know if you get it. I know it can take a long time, but, in the end, it will be worth it for you. I'm not sure if that covers medical too, but think it does. My nephew is on it and only in his 50's. He lost a few fingers on his left hand and got it right away. I know the hand they have made for him cost almost a million dollars and they paid for that. He also could get a job doing something, but is collecting for a few years now. Take care of yourself. 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] Just wondering if anyone has gone through unrelated bmt for cml...
TheresaI haven't gone through it, but I think you have a strong case. Press on! Tom in KY In a message dated 7/30/2013 9:25:03 A.M. Eastern Daylight Time, terrijef...@aol.com writes: Hello, I was diagnosed in May of 2000. Started on interferon and arac. Moved on to experimental drugs, Gleevec, Sprycel, Tasigna. in and out of remission until 2011. Everything quit working and I had to go with transplant at Johns Hopkins. They were terrific. I was put on disability. So now I am two years out and just became eligible for Medicare on June 1. I called to get drug coverage and they calculated the cost. Two days later I received a cessation of benefits, stating cml is in remission. I should be able to get a sedentary stress free job. In the meantime starting Feb, I developed headaches and high blood pressure. Creatinine went up. I was referred to a nephrologist with a gfr of 40%. I had a kidney biopsy showing glomulersclerosis. 65% of my kidneys are dead and dried up, this damage as I understand is irreversible. Since then I have dropped twice to 11% gfr and currently am at 21% which puts me at stage 4 chronic kidney disease. Severe function loss. Has anyone else dealt with this? I'm looking at poss transplant which they don't even know if I qualify as I am only 2 yrs remission from cml. I still take 800 mg tasigna daily to prevent it from coming back. So my other option is to prepare for dialysis. I am only 45 yrs old. Had to hire a lawyer to help with ssd, no guarantees he says. Just a lot to deal with all of a sudden. Would love to speak with someone who has gone through this or knows of anyone. Thanks, Theresa Migut Johnstown, Pa -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/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.
