Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
My husband, 72, is on Vidaza for MDS (diagnosed in June). He has had 3 rounds of Vidaza and is going to have a 4th round in Oct. He gets it as 3 successive shots a day for 7 days. He has had 2 transfusions so far. At first he didn't tolerate the chemo very well but he is tolerating it a lot better now. His health is otherwise quite good. I don't really know what category he's in. His doctor said he doesn't like to classify MDS because everyone is different but based on my husband's words, it sounds like low risk MDS.
Are there any of you out there in a similar situation and how is it going for you? He just received a flu shot yesterday and seems to be doing OK. He is so worried that he might get sick and have to be hospitalized. He was hopitalized for 6 days in July for an infection after receiving a pneumonia vaccine. He hadn't been diagnosed yet when he received the shot and had had the flu prior to the pneumonia vaccine. He recovered after a miserable stay in the hospital. He'a also very worried about catching a cold now that the Fall season and colds are going around.
Are there any of you out there in a similar situation and how is it going for you? He just received a flu shot yesterday and seems to be doing OK. He is so worried that he might get sick and have to be hospitalized. He was hopitalized for 6 days in July for an infection after receiving a pneumonia vaccine. He hadn't been diagnosed yet when he received the shot and had had the flu prior to the pneumonia vaccine. He recovered after a miserable stay in the hospital. He'a also very worried about catching a cold now that the Fall season and colds are going around.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
What is your husband's white cell count? Usually people with MDS are not more susceptible to infection unless their white blood cell counts are low. I've heard of Vidaza, but I would need to read more about it. Does it affect his immune system, white cell count or make him more susceptible to infection?
Unfortunately, it's not as uncommon as one would think to get a severe bacterial pneumonia during or after the flu. If I had to make an educated guess, I think this is what happened and that it is unrelated to the MDS. Being that sick and needing to be hospitalized is certainly a miserable experience.
The flu shot is a good idea. During flu season, your husband needs to take extra precautions to wash his hands often, to be careful what he touches and stay away from sick people. He can wear a mask although this isn't as protective as one thinks. So he would still need to be be careful. Keep hand sanitizer available in the car, etc. Most of these infections come from touching something that is infected.
I know he's worried. Unfortunately worrying lowers our body's ability to fight infection as well. Maybe his doctors can talk to him and relieve some of the worry. That will also help.
It took my mom 6 rounds of vidaza before seeing an improvement in levels. She handled the treatments great, hardly no affects at all. The only time she would get sick is if she forgot to take her nausea medication before hand. Even though her WC's are low, she's really fought off things rather quickly without complications.
Best of luck to you all.
Paula
I am male, 49. I was digniosed in 2003. At that time I was treated with blood transfusions and Procit. My blood levels come up and I stopped seeing my doctor for 2 years (marginally insured).
In 2009, I was hospitalized for 18 days. I went in with my reds 6, my whites at .5 and my platelets at 2. I received red blood cells and platelet transfusions and was started on Vidaza.
I started with 7 shots (1/day) in a 4 week cycle. I took seven rounds in 2009. My numbers came up. We stopped Vidaza for 3 months and my numbers started to drop. We are now at 5 shots (1/day) every 6-7 weeks. We are trying to find the maintenance dose and interval.
I tolerate the Vidaza pretty well. I always run a fever (101 F) the night of the first shot, and often the 2nd night. Vidaza makes me lose my appetite the days of the shots.
I have been told not to take the flu shot.
My reds are now 15, my whites at 3 and my platelets at 35-30.
I as also told not to take any vaccines that contain a live virus which includes the flu shots and H1N1. Is your husband going to a doctor that specializes in MDS? Did he have a bone marrow transplant to find out his blast count? Lots of question i would ask. It took me about 12 months of Vidaza to level to show an improvement so don't give up hope.