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MDS/MPD

mtair37
mtair37 CSN Member Posts: 2
My husband was told he had mds/mpd about 4 years ago. He since has been on several chemo treatments. The first only worked for about 4 months. Then he went on a year of clinical trial which worked for about 12 months. We were told this would never go into remission but if he can continue the chemo drugs he will keep him living. Things have been going like this for about 3 years now. However recently his doctor moved and since this time he has been going to another doctor who seems to be in unaware of the serious problems that he has had during this time. ( meaning several bouts with infections and complications) He visits with him for a about 4 minutes and says things like you should be here for a long time. However we were told before he was at a high risk. This is very confusing to us and we don't know what to think. Just can't seem to communicate with this new doctor very well. We would like to know how long a person can be on chemo? He is not getting any blood transfusions right now and counts are about the same. He also has hemochromotosis so they don't want him to get too much blood. Now when we go to the new doctor with any problems he tell us to go to an other doctor. Like he has had blood in his urnia, shouldn't he be able to tell us if this in something that can go along with the disease, without just telling us to go to more doctors. Any thoughts on this would be appreciated. Thanks