Newish patient.
 

Hi. I'm Raina. I'm 58 and was diagnosed in May. Cyclosporin wasn't helping, ( I didn't like it anyway, it made me feel worse). Doctor said next we will try Vidaza. Yesterday I had my first transfusion. I didn't really feel much different, but I actually did housework and did not get wiped out.
I drive for a retirement home for a living and I am worried about how Vidaza will affect my ability to work.
I am worried about if I need a transplant, because I don't want to lose my job. My boss is great and I am valuable there, but I don't know how corporate will see it.
My doctor tells me Vidaza is mild and that while I should consult a transplant doctor, I might not need one for years if at all. I go to Cleveland Clinic Florida.
Any comments?

Hi Raina,

How long were you on Cyclosporine and at what dose?

Also, was your MDS diagnosed because of chromosomal abnormalities, significant dysplasia, or both?

I took Cyclosporine for 2 months. I went to the doctor because I was bruising for no reason. The 1st dr. couldn't figure it out because my marrow looked okay to him so he said we'll just treat it as pernicious anemia, keep taking B12 shots. I said, "Forget that, I'm going to Cleveland Clinic." After 2 more biopsies that didn't show anything obvious except a hypoplastic (?) environment, the dr. there said that it was a very subtle presentation of the disease and put me on the Cyclosporine.
Tranfusion was 2 days ago. I woke up today feeling normal for a change.

Hopeful, do you get used to the Cyclosporine, or do you always feel the side effects?

Hi Raina,

I don't think a diagnosis of MDS can be made without chromosomal abnormalities, blasts, or significant dysplasia. Did Cleveland Clinic also recommend the Vidaza? That's a pretty powerful drug to take without a definitive diagnosis. I would get a third opinion involved.

Cyclosporine takes about 3 months to build up in your system to therapeutic levels. So, you may have stopped it too early to see any effects. The side effects can be rough when on the higher dosage and will vary person to person. Most people tend to tolerate it pretty well though (at least that's what my doctor told me). I am taking 4 mg/kg/day now and am not really bothered by it. What was your dose? What are your counts?

I'm not up on all the terminology yet, but yes, there is dysplasia, reds are in the 8's and enlarged and the others are down as well. The CC dr. brought up the Vidaza and he also discussed my case with others in his field because it was unusual.

I'm surprised they would not do a bone marrow biopsy before putting you on any of the drugs. Also, everyone reacts so differently, it is difficult to predict how you will do.

I've been on Vidaza since January, administered via injection in my stomach 5 days out of every 28. My side effects have been very minimal, soreness around the injection sites and a little tired. I had some rash and itching for a couple of months, nothing very bad, and it went away on its own. Overall, I feel better than before I started it because my blood counts are all good now. Because I have high risk MDS, my doctors are urging me to get a transplant soon--there is no way of knowing how long the Vidaza will continue to work.

Hope this info helps and best of luck to you.

I had 3 bone marrow biopsies. 1 from the 1st dr., who just told me to take b12 shots. 2 by my dr @ Cleveland Clinic before he put me on anything. Maybe he gave me Aranesp before the 2nd one, I can't remember. He says I am low risk.

I should have read your prior post more carefully - you even mentioned your biopsies. It's good to hear you are low risk. For me, Vidaza has been a miracle drug, but my doctors say that my response is better than the typical, and I am high risk so my situation a bit different.