Marty I read your email to qtk. Your story is interesting. You may be interested in hearing mine so here goes. In 2007 my kidneys failed, secondary to polycystic kidney disease. My transplant surgeon asked me to participate in a study whose purpose was to produce chimera (the donation of my brother's stem cells along with his kidney). The stem cell transplant failed. I did not achieve chimera. His cells are not detectable in my body. Approximately 6 months following the kidney transplant I developed CML. Approximately 2 years following the kidney transplant the kidney failed. I am now seeking a second kidney transplant. Tomorrow I find out if I go back on Gleevac. It was stopped following bilateral eye bleeds. Sprycel was initiated then stopped following a problem with my lungs. They may start me on a lower dose of Gleevac than before. Thanks for listening. Maggs
From: Martin Gartenberg <[email protected]> To: [email protected] Sent: Monday, July 25, 2011 6:45 PM Subject: Re: [CMLHope] Transplants Hi (QTK98) or should I call you Karen. I am kind of confused about that. Anyway, I read your story and wanted to make a sugesstion to you as well as some comments. I read about your transplant failure and I am sorry about that. However, did your doctor ever suggest that you might want to try getting your donors Lymphocytes rather then using the frozen cells? I'm also not to clear about exactly what cells that remain are? Are they actual bone marrow or stem cells? Was your transplant a T cell depleated transplant? If so then you also might want to have the T cells of your donor included in your next transplant if possible. Yes, I know about GVHD from having a T cell transplant but did you know that the chances of relapes are much less, about 30% less when the T cells are included. You sort have to gamble between the GVHD and the relapes. Depending on the amount of GVHD you may get. You also mention about your donor and yourself having a 10 out of 10 HLA match, which is a very good match, and even if you do get a bit of GVHD your probably not going to relapes. Let me tell you something about myself: I had CML over 22+ years ago and had a BMT using my sisters Bone Marrow. We were a 6 out of 6 HLA match which was at that time considered a "perfect" match. I also had total body rediation and a very high regimen of chemothreapy. I had to live in a small plastic bubble, Laminous Air Flow unit for more then seven months. That was the way it was done then, and there were no drugs like Gleevec or Sprycell or the rest of them at that time, so I had no other choice except for pushing up Daisy's. I did develope some GVHD, and till this day I still have a small bit of it. Usually in my eye lids by itching every so often just like having allergies. I can live with that because as of today I still remain at PCRU. I am sort of oppsite from you. As I understand it you had a kidney transplant after you were diagnosed with CML. I now have kidney failure from all of that radiation and chemothreapy twenty two years ago, but I am what's called a Chimera. This means that I was born with O+ blood type but my sister who was my donor was B+ now my blood type is B+ but my organs are still O+ It is like there are two people living in my body, but hey, I am still alive and don't hear any voices except when my wife calls me to dinner Karen, why don't you also check into [email protected] There are a lot of CML'ers there that can give you some excellent advice. I am a part of that and I must say some of these people are really very learned about CML. Both this group and the CML2 group are very good with a lot of very caring people. I usaally end any of my posts with the number 18. In the Hebrew language the number 18 means life, and it is pronounced CHI like clearing your throat. And that is exactly what I wish for you 18's Marty Gartenberg Original Birthday May 21 1944 Diagnosed CML Summer of 1989 BMT May 21 1990 On my birthday Seven months confinement in LAF Chamber PCRU as of today, July 25 2011, 22+ years post BMT Number 1 on Zavies Zero list On Sat, Jul 23, 2011 at 9:24 AM, <[email protected]> wrote: Hi Susan, > >I was diagnosed with CML November, 2008. I was on Gleevec, Sprycel and >Nilotinib, all of which decreased my numbers so much that I had to go off and >on the meds all the time to allow my numbers to increase. Therefore, I never >got a response from the drugs because I was never able to be on them long >enough to get a response. I sought out 3 opinions before my transplant and >was told, by all three doctors, I needed the transplant. They found a 10 out >of 10 match for me thru the Donor Registry and I felt, because I was in >relatively good health otherwise, I would do the transplant. The donor >cells grafted 95% after the 1st transplant, however then it failed, most >likely because my CML cells took over and rejected the donor cells. Since we >had some cells frozen from my donor, my doctor decided the best thing to do >was give me the remaining cells, but to do it using a different conditioning >regimen before transplant. That transplant never grafted and on top of that, because I didn't have an immune system due to the conditioning chemo, I ended up in the hospital for 11 days because of a virus and pneumonia. I'm currently recovering from that. I have now sought out another opinion and there is a chance my sister, who is a half match to me, may be able to be used as my donor. Hope this information helps. > >Karen >-- >[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 [email protected] >To unsubscribe from this group, send email to >[email protected] >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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope
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