[Jack L]

Jeff,

I had a BMT in September 2004 with roughly the same regimen as you are on. During the Busulfan I recall some nausea and fatigue. I believe I was taking Compazine or some other med for nausea. I just remember getting tired of popping the see-through capsules in my mouth for the allotted days and having to drink tons of water.(Although the drinking tons of water continues for quite awhile, so get used to it)!
The Cytoxan made me a bit queezy also but not to a point of vomiting. Hair loss started at this point with a diminishing appetite. Along with that I also had Methotrexate. The big side effect of that was the mouth sores. Those were no fun.
The big thing is to take advantage of the meds for nausea. These help tremendously and it was nowhere near as bad as I thought it would be.
Keep a positive attitude and best wishes.
BTW, I had my transplant at the Fred Hutchinson Center in Seattle, WA. I am 2+ years post.
Good luck-

[Jack L]

Hi Pamela,

As most of the previous posts have suggested, getting a knowledgable hemo/onco doctor is very important. More and more information is coming out about new ways to tackle MDS, depending on your situation.
I am now 37 years old but was diagnosed at 33. MDS was actually a secondary disease to me as it spawned from SAA (severe aplastic anemia).
I underwent an unrelated mismatched BMT in September 2004. I did have a few complications and battles but in the bigger picture, minor to what others have been through. I am 2+ years post now and have not had a transfusion since October 2004.
I have to credit the core group of doctors I had for helping me understand my options and being very knowledgable with my disease. I was treated at the Fred Hutchinson Cancer Research Center in Seattle, WA.
I have too much information floating around in my head to blurb about here. If you would like to pick my brain please feel free to email me.
Best Wishes.

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