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Old Thu Jan 23, 2014, 08:30 PM
Rich D Rich D is offline
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Join Date: Apr 2012
Location: Brooksville, FL
Posts: 16
Took a gamble with my MDS vidaza treatment.

Hi Folks,

I haven't posted in quite awhile, but wanted to let you know there are good outcomes from various treatments for MDS. I have had it for many years. Closest estimate 11 years. Knew for sure in 2005. Anyway they tried the Procrit for a starter, did nothing. I got agitated and stopped the treatment. Went back to the cancer center a few years later and started with Vidaza. I've taken it for 21 months, first 14 months 5 days on 2 off and 2 more days. Cut that back to 5 days per month, everything stayed basically stable. I was receiving this drug subQ and staying in the 10's for the most part. Never lower than that. After all those months the side effects, pain, and rotten feelings for sometimes a week or so, I felt that basically I was just running in circles. New cells coming in, many destroyed, bad cells there, some destroyed. Long story short, I told doc we would stop treatment and see what happened. First month without HGB dropped to 9.3. Thought I might have made the wrong call. Second month number up to 9.6. Hmnn, a little improvement. Last month it went up to 10.3. So we will see. I'm not on any transfusions, in fact I've had but 3 two baggers, and that was when I first started the drug.

This is a great site. I got loads of information, good will, and a more positive attitude. Brigitta was a great inspiration, and very knowledgeable about MDS. Neil and many other had great contributions.

I'll post next month. Doc figures if that's a decent reading, I'll only go to get a reading each three months, then stop. If I start feeling poorly at some point after that, assuming all goes well prior, then I'd go back and have a bone marrow aspiration to see what's going on inside. I hope we all do well. I know that can't happen, but some amazing things can, and new drugs and treatment are coming along. Oral Vidaza should hit the docs in 2014, that alone makes treatment much easier.
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CLINICAL DATA:
I
66-year-old male with anemia. Evaluate bone marrow for a myelodysplastic syndrome. Accompanying CBC report, dated 9/26/11, indicates WBC 11.1
KluL, RBC 2.66 M/uL, Hgb 9.1 g/dL, HCT 28.5%, MCV 107.3 fL, MCH 34.2 pg, MCHC 31.9 g/dL, RDW 20.2%, platelets 490 K/uL with a differential count
of granulocytes 68.5%, lymphocytes 22.9%, mid 8.6%.
Rich

Last edited by Rich D : Fri Jan 31, 2014 at 02:46 PM. Reason: Gives numbers from 2011
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