What can I expect?

[Iron Mike]

I've been diagnosed with MDS and will be receiving an allogeneic stem cell transplant from my brother at the Mayo Clinic Hospital in Phoenix. I've been living with the diagnosis for about 4 years now (I'm 50), have been in and out of "the system" due to lack of insurance, but now that I'm back on, so is the transplant. I've received a course of Dacogen treatment (last year) and 2 blood transfusions (in the past 2 months). I'm just curious about what to expect with the stem cell transplant - anyone out there had a similar experience they can share? Thanks to any and all of you who are here to discuss and help.

[Debbie W]

but try and stay active and put on a few extra pounds if possible, keep moving and eating if only a little bit. Use whatever drugs you need to in order to get through this period, that was from my husband's doctor.
Best wishes,
Debbie

[Lori Patrick]

Unlike Debbie's advice to put on extra pounds now... I gained weight through the process. During induction I had many milk shakes and the same during the transplant. I did not, luckily, experience any mouth sores at all. I still have 25 pounds on that will not shed until my prednisone is stopped.

The transplant itself is painless. For me, the induction was by far the worst. Ditto to Debbie on taking medicines. This is no time to be a non-medicine trooper. Take the antinausea, pain, sleep meds. I don't remember a lot of the "Bad" days but my husband does. I am now 1+ year after transplant and I am alive! I've had some complications, but nothing severe. I am now planning my second bike (motorcycle) trip with my husband from Indiana to Texas. At 6 months post transplant we rode to Denver.

Be sure to ask God to give you courage and when you feel you cannot do it, turn it over to him. God is good. Hugs, Lori

[mausmish]

Hi Mike! Yes, every transplant is different without a doubt. I agree with Debbie about the weight - I had plenty to spare, thank goodness, as I lost a lot over the first six months even though I made myself eat. Thankfully, I haven't needed immunosuppressants or steroids. Do take whatever meds you need. Do try to remain positive but understand it is normal to feel depressed and overwhelmed at times. Do accept help and support from friends and family. My husband and I chronicled our experience in our blog linked below in my signature. Please feel free to contact me privately if you have more specific questions and want longer replies. Best of luck to you! Karen