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Transplants Bone marrow and stem cell transplantation

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Old Thu Jul 25, 2013, 09:19 PM
MrHandy2013 MrHandy2013 is offline
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Join Date: May 2013
Location: Westchester,NY
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Thumbs up My Transplant.

I have been in treatment for B-Cell Lymphoma and MDS for 3 years. My B-Cell Lymphoma was to be treated first before the MDS. At the time of my diagnosis, my platelet count was just 5%. After the required 4 rounds of Rituxan (B Cell Count was 30%), the B Cell count had dropped to less than 1% and has decreased even more in the last year. MY blast count on the other hand increased to a total of 14% and I was started on Vidaza. I went through four rounds of that and there was some improvement but not enough to satisfy my Transplant doctor and primary oncologist PLUS, it did not like me at all!!! was given about 7 weeks off from any chemo then started on Dacogen (decitibine).
I have become transfusion dependent(3 units of HLA platelets every 5 days and Packed Red Blood cells(HLA matched) every 2 weeks. I have had a few close calls with the bleeding but if it starts in the obvious places,( my gums) I go directly to the hospital which is only about 15 minutes away. Having to have HLA matched blood products, especially Platelets. is difficult for the Blood Bank to get quickly but so far they have ben able to get them within 48 hours,,,,

My transplant Doctor believes that now is the time to go ahead and do the procedure. All of my marrow tests show the improvement necessary to proceed with a good prognostic outcome. I have no other health issues and never have had anything major. I have been extremely lucky with my white count going very low (.6) and responding well without getting sick. Doctor believes that i a really good thing too..

So on September 6th I will enter the Transplant Unit at Westchester College Of Medicine and prepare for my transplant on the 11th. My older brother (64) is my donor because he is a 100% DNA match. WE are ready. I am ready...and I am going to kick the ass of this disease and move ahead with my life. I have not given up yet and I intend to not do it at all.
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Old Thu Jul 25, 2013, 09:53 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
MrHandy2013,

I applaud your determination to keep fighting back, and I understand your decision to go ahead with a transplant. It's clear that these diseases aren't going to disappear on their own and it's fortunate that you're transplant eligible and otherwise healthy.

A sibling match is clearly a plus. I assume that you are in your 50s or early 60s so waiting years more could make a transplant less of a possibility (even if your brother stays healthy enough). If you're going to have a transplant, the sooner the better.

If you could coast through the coming years with only transfusions then that would be another choice, but needing transfusions so frequently isn't a very sustainable way of living. You'd be tied to the hospital and your constant need to check blood counts.

None of your choices is risk-free, but that's the nature of MDS. I wish you the best of luck and hope you'll keep us up to date.
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Old Fri Jul 26, 2013, 01:18 AM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Best wishes for a successful transplant!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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