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Old Mon Nov 1, 2010, 02:32 PM
mausmish mausmish is offline
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Join Date: Mar 2010
Location: Maryland
Posts: 453
Hi Gary,

I can only speak for myself. I'm not a counselor or a health care professional of any sort. I'm a computer geek and crazy cat lady. I went through a similar thought process when I was diagnosed last January, weighing the known quality of life vs. the unknown potentials of treatment, including a lot of negatives. My doctors were pressing me to go for an immediate bone marrow transplant. Without treatment, my life expectancy was a reasonable ballpark 6 months. I wasn't feeling as bad as I should have, considering how low my counts were, but I was getting infections more easily and was running tired and very short of breath. My initial reaction was, "I don't want to die, but if that's what's going to happen, I can accept it peacefully." Quality of life is important to my husband and me. I was terrified of the prospect of a transplant. I opted to try Vidaza, which is similar to Dacogen. Fortunately for me, it began working with the first cycle and improved my quality of life a lot. All of my counts came into normal range within a couple of months and have mostly stayed there for the past 10 months. No more shortness of breath. No transfusions. Less fatigue. My platelets run a little low, sometimes hovering around 100, but before they were in the teens and twenties so 100 is good. I get the Vidaza via injection so my appointments are quick and easy. I've had minimal side effects (constipation, achy muscles for a day or two, a slight rash during one of the cycles). By summer, I decided to consider the transplant and went for consultations at several different centers to get different viewpoints. I also talked to a lot of transplant patients about the pros and cons. I am still afraid (terrified, actually, as is my husband) but I've decided to move forward, and in fact, will be getting a transplant the end of this month. I continue to feel great with the Vidaza treatments so it's very difficult to contemplate what the transplant will do to my quality of life. I decided to take the risk after hearing of so many positive outcomes and realizing that I wasn't as at peace with the idea of death as I originally thought. I've always believed that happiness comes in moments. I want to seize as many as I can. Obviously, each person must find their own path. Best of luck to you in your own journey, whatever you choose (and don't feel bad if you change your mind a lot of times along the way). I'm not a "group" kind of person myself but this forum is a great place to vent and to get as much or as little support and information as you desire, lots of super people here.

Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com

Last edited by mausmish : Mon Nov 1, 2010 at 02:35 PM. Reason: typo
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