Marie - I just started dacogen treatments two months ago. So far so good, but I have been writing to find out if other people are having the extreme fatigue. I see that you said your doctor may do longer periods between treatments, does that make a difference in the tiredness? I have not had a normal strength day since I started. How are you doing?
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Originally Posted by marieostrom
Roger,
I had a pic line for about 8 months and had the same problem keeping it dry. Hopefully your nurses are using Tegaderm over the actual entry point. For showering I usually used the sleeve that my daily newspaper came in with a lot of waterproof tape. It was sometimes more trouble getting it off than getting it on. During the day I would keep it covered with the top of an old sock which fit my arm pretty well and kept the end of the pic from snagging on anything as well as keeping it clean.
I did have a problem after 8 months when I developed an infection and blood clots somewhere along the line. It was removed and I now have a Power Port implanted in my chest which has given me no trouble after two years.
I was diagnosed MDS/AML in July 2007 and had 12 months of Dacogen (five days every 4 weeks) with very few side effects. I achieved remission and was off treatment for 15 months when I began to relapse. Started Dacogen again Feb. this year and have had 4 treatment cycles. This time around my counts are not recovering as quickly and the fatigue was much worse so my doctor and I are looking at the possibility of longer periods between cycles or lower dose. I see her again next week.
I have been very satisified with the Dacogen and hope your results are as good.
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