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.
Bruce, please forgive the tardy response. I’m not sure which numbers you mean. My white blood cell count has been around 17,000 for the last couple of months. I feel fine. No complaints. When pressed for a recommendation my hematologist favors waiting until January for the next blood test. My wife agrees. I have been ambivalent, but now I’m in agreement with “observation.” I’ll pay more attention to the numbers next time – especially trends. Thanks. Larry
Larry. By numbers I mean red, white, Hemoglobin and platelet levels. My white cells are extremely low 2.2 or 2,200 compared to yours of 17,000. Normal white are 4,000 to 11,000. So mine are very low and I’m very susceptible to infection. Yours are very high which means your bone marrow is trying very hard to fight off an infection so it’s in a way doing it’s job right now. I guess I would be interested in what your red cell levels are plus hemoglobin and platelet levels are. My red is also low at 2.5 (normal is 4.2) and hemoglobin at 10.5. Normal is 14-18. Platelets are still normal but lower area. Did you have a bone marrow biopsy? You seem to have a different form of MDS than me. If I was you I would go back to see your hematologists sooner than January but…..
I apologize for the delayed response. My WBC is 15.1, RBC 5.9, Hemoglobin 16.1. Counts in these general regions are what gave rise to my bone marrow aspiration. My hematologist has encouraged me to delay treatment until further blood work is done in early January. After downplaying the side effects of chemo in our first conversation about treatment, later she described them in terms that suggested they can be intrusive so it’s a idea to avoid them as long as possible. I was inclined to start subcutaneous injections right away, but decided to take her advice and delay. Meanwhile I’m watching for signs that my immunity has been compromised significantly. “See me if you aren’t feeling well,” she said. I find that to be totally subjective so I’m not sure what is worth reporting and what is simply a part of the aging process – aches and pains, for example. I don’t feel right, but I’ve lived with that for several years. It’s all very confusing – what do I do and when? It’s my assessment that I’m doing okay for now, but I wonder if I’m taking risks needlessly by waiting. Thanks for your comments. Larry