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Old Sat Jun 27, 2015, 01:08 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Data and Cheryl,

I wouldn't normally respond to the last post, but wanted to clarify that I think that the watch and wait (hopefully without the worry) is a valid and strong approach and one that I used for several years. Being able to do what we want to do, even at a slightly reduced level is incredibly important.

I would have gladly continued down that path for as long as it would sustain me. I was 40 when I opted for transplant and have 3 children under the age of 18, so we reached that crossover point where even with the potential for a reduction in quality of life, I wanted to be here and take the route that gave me the greatest possibility of watching them grow, go to college, get married, have children etc. Additionally, the two cycles of Vidaza that I took before going into transplant didn't give me much encouragement of getting back to my adjusted MDS normal. I was hoping to be the 5 year vidaza success story that I have read about so that we could give the scientists more time to find a cure.

I think that if the odds of transplant success were any lower than they were in my circumstances, I would have opted for the best way to live the longest with the lowest side effects for quality of life purposes. It is a difficult decision with variable success rates. My decision was made after reviewing the ever so fun but morbid comorbidity indexes and newer research on timing of transplant charts. I have a mildly dark sense of humor so looking at your life as an equation created by a mathematician doctor and conclude that, well, if I take this route I have x amount of time that is a pretty reliable measure, and if I take the other, I may take a year or three or four years off for the potential to be here for 10 or more.

I am a pretty darned analytical person on the whole, but even with the math, all I could do is say - well, I hope that I am on the right side of the equation. On the whole - life has been equal to or better than the couple of months prior to and following transplant. At the time the election was made - I felt like I was falling down pretty fast, so my quality of life was dropping to the point where my doubts about moving forward were pretty well resolved.
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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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