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#1
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Transplant coming
After 9 years the Dr. pulled the trigger on a transplant. I was on watch and wait, Revlimid and Dacogen. Per my latest BMB there is not much change in the marrow but Dr. says Marrow is getting worn out and not responding.
After expecting this for 9 years I am almost looking forward to getting this done and moving on. Dr. has a positive attitude on the outcome. I have 4 10/10 matches in which she will pick what she thinks is the best. I'm 54 and healthy except for the MDS. Transplant will probably be in March or April. Any suggestions on what I should be doing before the transplant?
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Diagnosed at 46 in 2007.RCMD--Refractory cytopenia with multilineage dysplasia Was on Revlimid for 4-5 years. On Dacogen for 6 months. Currently transfusion dependent. RBC 7+ range, Platelets around 20, WBC 2.2 Neutrofils 300 range. Blasts below 5%. Low Int. |
#2
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Hi Skip - Its great you responded so well to treatment and were able to postpone transplant for so long - you have a lot going for you now - being relatively young and healthy. As you wait for transplant keep exercising, eat healthy and enjoy friends and loved ones. Eat out at your favorite restaurants - it'll be a while before you can after the transplant. If you haven't already, make sure you have a will, health care proxy and living will - just in case - but everybody should have those documents prepared anyway, regardless of health.
After about three years from being diagnosed, I had my transplant - about four months ago and I am still in recovery mode - Going in I was excited to finally be able to start working towards getting well - rather than slowly going down hill. Since transplant I'm able to do things I hadn't for years - and I feel like I'm finally moving toward feeling good again. There are a lot of wonderful people on this board who have had a variety of experiences - who can provide you with information and support - everyone has been very helpful to me with advice and encouragement. Stay positive and enjoy life! All the best, Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015 |
#3
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Paul,
Thanks for the encouragement it is appreciated. Right now I'm going to the YMCA 2 times a week and working on the cardio machines. My next Dr. appt is Feb. 16th and I'm wondering if I will get the date then.
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Diagnosed at 46 in 2007.RCMD--Refractory cytopenia with multilineage dysplasia Was on Revlimid for 4-5 years. On Dacogen for 6 months. Currently transfusion dependent. RBC 7+ range, Platelets around 20, WBC 2.2 Neutrofils 300 range. Blasts below 5%. Low Int. |
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