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kdevito Tue Oct 24, 2017 02:32 PM

Bone Marrow Transplant
My father, age 72 now, diagnosed with RCMD at 70 is in the preparation stages of a transplant. I see here that several have successfully completed this procedure and am looking for tips. The decision has been excruciating. He did well upon initial diagnosis, no real issues, still low blast count, hovers around 4 to 5% no one concerned about that...but all three lines impacted, WBC, RBC and Platelets and very fatigued. Initially started Neupogen to deal with low WBC and neutrophil. It worked well for awhile, then spleen very enlarged and took over the process of making blood cells since basically in total bone marrow failure. He went downhill, hemoglobin dropped into the low 7's and needed transfusions. Plan was transplant but was not "fit"...lost a lot of weight....Then he started Dacogen over the summer and in 4th cycle now. He has turned around and feeling pretty good...the goal was to do a few rounds to see if he could become fit enough for transplant. However, now that he's feeling better and doing more, it's hard not to say, let's just stay on the Dacogen.....3 of 4 doctors recommend transplant now. The only doctor saying no is the Doc administering the chemo. Hard to think about going backward when he's so much better, but all involved in his care say this is only temporary and that he may lose the window for transplant a second time if he does not do this now...Eventually the Dacogen will stop working and he will go downhill quickly based on where he was before....he likely only had a few months left the way we were headed. Looking for advice and anyone whose had long term success with Dacogen and anyone else dealing with this decision making process. Thanks!!

rar Tue Oct 24, 2017 03:24 PM

3+ years ago I had MDS RAEB 2. I was on a clinical trial for a drug that gave me remarkable results. All my doctors said all medications eventually fail, have a transplant while you are relapsed and strong. I did and it worked with some side effects. Without the transplant I had a 4% chance of living for 3 years. Transplants are the best bet if you are at high risk.


Callie Tue Oct 24, 2017 08:50 PM

For my dad (Bailie), the choice was easy - he never doubted needing to go to transplant. His disease (at diagnosis) was moving fast. Fortunately Vidaza got him into the best place possible for transplant while they searched for a donor. We (his family), like you, really didn't want him to go to transplant right then. He was doing great, enjoying life, feeling good. I really wanted as much of that for him as possible. But, while everyone is different, and each transplant (including gvhd) outcome is different, it's probably a good thing he didn't listen to us. If the plan is transplant, it is very important to do it at the optimal time healthwise. If he'd not gone through with the transplant, there is almost no doubt he wouldn't have lived as long as he did. He did remarkably well at transplant because of the shape he was in. But it was amazing the difference 3 years later when he had to go through induction chemo (treatment wasn't all that different) - he just didn't have the strength, both mentally and physically, that time around.

We all wish your dad the very, very best. Please make sure to ask as many questions as needed!!

kdevito Tue Oct 31, 2017 09:24 AM

Thank you for the responses.....Bailie, I'm sorry you lost your father to this disease. I appreciate your insight. Getting biopsy today and all other tests complete. Guess a final decision roll be made soon. While he's getting a response to dacogen, the last round wore him out out and he doesn't have the stamina he's had the last 2 months. Maybe this is a sign that it's time for transplant. I keep praying for a sign that will lead us to the right decision. Someone's the signs are subtle I suppose!

kdevito Tue Oct 31, 2017 02:25 PM

Kellie, I just realized, by reading another thread that you are Gary's daughter... I'm sorry I'm new to this forum and haven't looked through everything. I read your original post regarding your father's passing... Again, I'm so sorry for your loss and thank you for continuing to post and offer guidance. Your words resonated with me. Interesting that I'm a Kellie too with same spelling...not too common! Best regards and I hope that you are finding some peace and comfort knowing that your words here are helping others.

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