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JAMES KAMP
ParticipantHi Randy,
I am a 60 year old male that was diagnosed in Nov 2016. I am about to begin my 14th round of Vidaza on Monday. I don’t think I am tough enough to go through the transplant. I saw improvement in 3 months on Vidaza and in 6 months had close to normal numbers (they vary allot within the month). Remember that everyone is slightly different and responds differently. I hope the transplant goes well for you.ParticipantI saw significant improvement in month 3.
ParticipantI just finished another 5 day treatment of Vidaza. I think it was the 13th cycle. During days 3 – 7, I am amazed at some of the decisions I make. I do things I would never do at other times. I have been able to keep my desk job, but try not to do anything important on days 4 and 5. By day 7 things are returning to normal. My wife was frustrated with me at first. Now, we are learning the pattern. When she questions my planned actions, I know just to trust her. I fought it at first. Now I know it is part of the treatment.
I would add that my brain did not work correctly when my hemoglobin was low, either.
ParticipantI was a bone marrow donor to my brother in 1996. I was given a drug to make stem cells and had bad bone pain. I was diagnosed with MDS in Nov 2016 and am on Vidaza. At certain times of the month my bones ache the same way they did back in 1996. I think they are straining to make blood. When I state that fact, people laugh at me. The doctors just say to take some Tylenol (which helps).
ParticipantWhile on Darbepoetin for a year, I took voriconazole. The 2 side effects I dealt with were vision issues and fluid build up in my legs. Neither side effect was that bad. The fluid build up was managed by wearing compression socks. I learned to like the socks and kept trying socks with different levels of compression until I found the best socks. The socks can get expensive and the higher compression socks are difficult to get on and off without help.
The vision issue was seeing blinking bright lights. It was like when sun shines through the trees while you are driving. I helped if I closed my eyes (avoids the dizzy feeling) and would last under 30 minutes.
When the Darbepoetin stopped working, I stared chemo (Vidaza). After several months of Vidaza, I was able to drop the voraconazole.
Wish you the best,
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