My husband, 73 yrs. old, was diagnosed at the end of Oct. 2015 with MDS. He is RAEB-1. He has had 3 rounds of Vidaza. He gets those for 5 days a week and then three weeks off. He has had two infusions of blood and platelets as he was so low. We start the fourth round of Vidaza in a couple of weeks. He had one day of feeling weak, dizzy, and light headed. The next day he seemed to perk up some.
I was just wondering what to expect from someone who is going through this. Would appreciate a heads up.
I am 71 and was diagnosed 18 months ago. I started Vidaza (5 days a week every 23 days) in Feb. 2017. I have now had 15 infusions. I have not had to have any transfusions since my counts have not been low enough to warrant them. Like your husband, during the weeks of infusions I feel a little weak and tired but I still have enough enoergy to play golf 2x during infusion weeks. I also receive Aloxi (?) for nausea on Mondays and Thursdays and on those evenings I feel flushed and feel flu like symptoms which are gone by the next morning. I usually take my infusions late in the afternoons so that I can come home, eat dinner, watch a little TV and go to bed. The next morning I feel fine.
I have watched my counts slowly increase after about 5-6 rounds of treatment and have now leveled off to a point where my life is relatively normal. My Platelet counts now hover around 75-85, red blood count 3.75-3.95 and white counts 2-2.5. I have not had any episodes of nosebleeds or excessive bleeding in 13 months and I seem to clot relatively quickly.
I recently had a port out in because my veins had become too scarred to easily insert a needle for the infusions. The port insertion required minor surgery. I was fairly simple and, except for a small lump on my chest below my collarbone it is not even noticeable. I had my first infusion using the port 2 weeks ago and it was a lot easier and faster than trying to find a vein. I’m usually in and out of the infusion in less than and hour.
I have just been diagnosed with MDS. My physician explains that I am in a “grey area” with respect to starting treatment or observation. She left it up to me which way to jump – treatment or observation. I’d be interested in hearing from others who were given such a choice. What did you do? Would you do it that way again if you had a chance? I’m nervous about the infusions. Evidently they are “not under the skin,” but in a vein. Is that correct? Thanks. Larry
Hi Larry. I was diagnosed with MDS in June after taking about 8 months with low red, white and hemoglobin levels. My platelets are still in the lower normal level. In order to help you with an answer should you start treatment what are your numbers? How are you feeling? Are you tired and fatigued all the time with little energy? I am still in the early stages of MDS. I’ve had 12 EPO (erythropoietin) injections to raise my hemoglobin levels to stimulate bone marrow to produce more red blood cells. The goal is to get Hgb to 11 so I feel better. I was in the middle 8’s now up to 9.9. No talk of transfusions yet as long as injections are working. Bruce.