Hi "Maggs", It sounds like you have been through the mill. I am sorry to hear that you didn't reach the Chimera stage, and that your kidney transplant went "South".
I would assume that your now on Dialysis? That is where I will probably be soon. I am wondering if you have ever heard of Home Peritneal Dialysis (PD)? What are your plans now? I really do wish you well, and I have added you onto my prayer list. *18's* ** *Marty* On Tue, Jul 26, 2011 at 7:56 AM, [email protected] < [email protected]> wrote: > 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 -- [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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