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Old Wed Sep 6, 2017, 01:19 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Rarity,

I am sorry to hear about your husband's diagnosis. As for your question about timing, I would say that it is individualized based on your husband's condition, progress of the disease, and ultimately the risk versus reward matrix. My doctor thought that it was best to watch and wait until it became obvious that a transplant was needed. There are various studies out there that have some conflicting information, but the biggest problem is that you only get to see aggregate data, not data that may match any individual's situation very well.

The big picture guideline is that you want to do the transplant prior to MDS converting to AML - which is defined by 20% blasts. You also want to make sure that it is done prior to suffering damage to the organs, and prior to becoming severely overloaded with iron from too many transfusions. For some reason, iron overload has been correlated with poor transplant outcomes, although most of that data is older.

In my case, I was diagnosed in 2010 with MDS RCMD, trisomy 8 and bone marrow fibrosis. The only true sign of the disease was that I had thrombocytopenia. This persisted for almost 4 years where I had 20k to 30k platelets - (150k is low normal), but I did not require transfusions or treatment. Then one day in late 2013, it all changed - it became very obvious that a transplant was required to give me a chance to live, and so within 2 months of the change, I was in for transplant. I am now 3.5 years post-transplant. The doctor told me I would know when it was time, and I certainly knew at that point that it was time.

The unpredictability of the course of MDS along with the personal health history makes it hard to pinpoint a date or a timeline, which might be why the doctors seem to be playing coy with your husband. I received 3 separate opinions, and all three said the same thing in the beginning, "you are too healthy for a transplant, there is too much risk right now."

I think that it is wise to get that second opinion both for the confirmation of diagnosis, and for a confirmation of treatment plan. I know that I was able to feel a lot more comfortable once I was told the same thing by different, completely unaffiliated doctors that specialized in bone marrow failure and transplant.

Along with being proactive self-advocates, maintaining a positive attitude and confidence in the outcome are key to your husband's long-term success.

I wish you both well.
Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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