Ken K

[Kenneth Kaphammer]

I just found this group through ACOR. I hope I can learn more about my condition. I have MDS and was diagnosed in May 2008.
It is a long story. I am now 79 1/2 years old and have been strong and physically active all my life. About 12 years ago I again volunteered to give blood at a blood donor drive. The nurses asked if I was interested in being a plasma donor, rather than blood donor, since my blood type AB+ was so rare it was not needed. I agreed and for about 2 years I went through the process. Then, I was told my WBC was a little low, come back in a month. It was a little lower and they suggested I see my regular doctor. The doctor said, "Your WBC is low normal and the blood center needs high normal to draw your plasma, but we'll watch it."
For the next few years, the doctor said, "Your WBC is a little lower, we'll watch it." Then, his report was, "Your RBC is starting to lower, we'll watch it." In April of 2008, he reported, "Your platelets are now starting to drop also. It's time to act!" He referred me to the Oncology Center at Holy Name Hospital in Teaneck, New Jersey. After blood tests and a marrow asperation, I was diagnosed as having MDS. All this time, the only reason I knew there was a problem was from blood tests and doctors opinions. I felt good and had no obvious symptoms (I would get a cold about once every 3 or 4 years and had no other complaints.) I was getting tired, but considered it natural for my age.
I put on a 4-week treatment schedule: week 1 - shots of Vidazza each day from Monday through Friday, then for weeks 2 through 4 a blood test on Friday to determine whether or not I needed a Procrit shot to build up my RBC and how many Neupogen shots I should give myself to build up my WBC (for immunity). This continued until about 6 months ago when it was decided to try a 5-week treatment schedule. It seems to be working and they are now looking to extend it to a 6-week schedule.
I have been tolerating the treatments very well and look (and more importantly) feel well. Friends who know my situation, tend to think I am exaggerating my condition, since I look well, feel well and carry a heavy load of volunteer activities while maintaining a very positive attitude.
There are only three negative reactions to my treatment. The worst is my reaction to the anti-nausea pill I receive a half-hour before the Vidazza
shots each day of week one. It makes me severely constipated and laxatives, extra fluids, etc., have no effect. It takes 3-days to get back to normal. Second: by Friday of chemo week I am wiped out, Saturday I am still very tired, Sunday I start to feel alive and on Monday morning I got to my workout gym. The first 15 minutes on the elliptical exerciser are torture, then I start to feel alive and I make my complete hour. I'm back to normal. The third reaction is the soreness in my arms for getting 3 shots a day for 5 days.
In March (2010) I'm scheduled for my 4th marrow aspiration. I hope it shows progress. In the meantime, I continue my routine of charity volunteer work and look forward to my future.