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Old Mon Feb 29, 2016, 11:52 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Data,

I am sorry for the scare and delay, but am very glad that you are able to move forward at this time. As with Neil, I am hoping that the doctor is underestimating the odds but as you utilize the nonmenclature of data, you already know the value of what I am going to share......Odds are aggregate, success and failure are individual. I went in with grade 2-3 myelofibrosis, 16% peripheral blasts, very high ldh, trisomy 8 in 20 of 20- cells and was failing Vidaza treatment. I knew that I had to win and that my doctors were going to help me win. 6 months after transplant, I relapsed - a very bad sign with MDS, w treated with Vidaza for 6 more months and then stopped. I have had several bouts of cGVHD as well as avascular necrosis. Even as recently as Novemeber I lost 20 pounds in a month. I just had surgery to replace my left hip, I have the best blood counts I have had in over 7 years, and my energy level is growing by the day. I know that I will win with the help of my doctors, and you will as well. I believe. The odds are yours to manipulate and use in the way you want ----- be the 30% on the right side of the equation and give yourself the best odds every day by complying with doctors' orders, staying in good shape, avoiding infections, and moving every day, regardless of the difficulties. Oh, I forgot to mention - I am one year post Vidaza, no evidence of any cancer cells, no mds, cells, no abnormal cells in the marrow nor the periphery, cGVHD is at a minimum. I have 200k platelets. 6.5 WBC, and a 13.4 HGB - which is the best it has been in at least 7 years........victory is yours to seize.
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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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