[DanL]

Carole,

I don't think any of us want to meet through a forum about MDS, but welcome and good health to you. Since you did not post any of your blood counts, I can only speculate a little and give generic information that I have used.

Random headaches with MDS could be caused by low hemoglobin/hematocrit. If your red blood counts are low, it could mean that you are a little low on oxygen getting to the brain, and with exercise, exertion, getting up quickly, or any number of activities, you might get a headache or become light-headed for a moment or two, or three. This also seems to happen sometimes at bed time, after consuming caffeine, or potentially alcohol as the caffeine boosts your heart rate and alcohol binds to red blood cells reducing your oxygen levels.

As for Vidaza, I have been on it twice now. One time for 2 months prior to my transplant last year, and now for 6 months after a relapse in August. I have done quite well with Vidaza, but have noticed that I go through a pretty regular cycle of decreasing then increasing blood counts. For the first week (treatment week) counts are generally stable to increasing (this after the first couple of cycles), weeks 2 and 3 I approach a trough, then week 4 is back on the rise. This is my personal response over the past several months. Everybody is different.

As a result of decreasing platelets, red blood counts, and white blood counts throughout the cycle, I personally do not drink any quantity of alcohol. I have had a drink or two over the past six months, but almost always during week 4 of the cycle, after getting blood counts. The reasons - 1) low hemoglobin is amplified by alcohol as noted above 2) low platelets can lead to internal bleeding or poorer platelet function if you have an accident - like bumping into walls, which is a pastime of mine even without alcohol 3) reduced immunity due to low white blood counts - alcohol tends to further weaken immunity.

There is not a lot of evidence out there that a little bit of alcohol is harmful, it is just my choice to not really test the impact -

I think that you can work with your doctor to get more information and his/her opinion on the matter. I am not a doctor, just an MDS patient with 5 years of observation and practice on my body and its responses.