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Old Tue Feb 26, 2013, 07:57 AM
Rich D Rich D is offline
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Join Date: Apr 2012
Location: Brooksville, FL
Posts: 16
Thumbs up Sometimes pretty long.

I have had MDS since around 2006, maybe earlier, but I rarely went to a doc, and in 2006 I seemed a little fatigued so I saw the doc, he sent me for blood tests, and said he thought I had MDS. Went to Florida Cancer Institute and they put me on Procrit, which did nothing. I was disgusted and didn't return until the beginning of 2012. Had a bone aspiration and biopsy, saw two different oncologists at different places, one said I had it, the other said no. Went back to Florida Cancer and they put me on a 7 day two shot each day program, the first day of each session they gave me decodron 100 mg(?) and a saline solution preceding the vicadin. The decadron is supposed to help with nausea. I didn't have that problem but the drug was like speed to me. Stayed up all day and night each Monday. Talked to the doc and we cut the decodron to 60mg. A little better, but still sped through Mon. night.

When I started by Vidaza my hemoglobin was between high 9's and low 10's. It dropped to 7.2, and I went 3 times for blood, two bags each time. That was last June. From there the vidaza began to kick in, gradually at first, then pretty much up a little each each session. Anyway ! started my 12 session and my count is 12. After about session eight we went down to 5 sessions instead of seven, only going for 1 blood test during my off weeks.

I have neuropathy, and that has been much more aggravating than the MDS. I don't have a port, so my vidaza is given in my arms and stomach. A little painful and sore muscles the first four sessions, then it gradually decreased.

More good news for us, the oral version of vidaza should be available in early 2014. Then just a pill and maybe two blood test a month.

I've been pretty lucky so far. I try to do a lot of research, I have a world class oncologist, Dr. Maholtra at Florida Cancer Institute in Spring Hill, FL. and we work very well together.

I don't have updated expectancies, but do believe more people are having positive results than back in 08/09.

Sorry for the ramblings and poor grammar, but remember this is Tuesday, so I was up all Monday night.

The best to you all.

Rich
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