Myelodysplasia Support Group

Please ask your father's oncologist about this, asap, as iron buildup from transfusions is indeed a problem. I imagine the doctor is doing frequent bloodwork on your dad, so he should know his iron or ferritin levels, and can tell you what is best here.
Good luck to you!

My father was also diagnosed with Myelodysplasia about five years ago. He has been getting transfusions about every 2 - 3 weeks for the past couple of years and is prescribed something called ex-jade to counteract the iron build-up in his system. I would definately have your mom and dad talk to the doctor about iron supplements. My dad also takes potassium - you mihgt want to have them talk to the doctor about that too. Hang in there!!

Thank you for your replies. I am not sure what his current counts are. He was getting Aranesp shots every 3 weeks which made him feel better but did not improve his counts. They did another bone marrow biopsy and said it hadn't change from the first done more than a year before. We figured no worse was better than nothing. They quit the Arnaesp shot and gave him Neupogen. That did nothing so they gave him the infusion. He had another one last week. He quit taking the iron supplements but they aren't giving him anything for the iron buildup. They also gave him another Aranesp shot. At his last appointment they said they were going to quit all the shots because they weren't doing any good although he doesn't feel that bad. His Dr. is stumped because he actually feels pretty good. He is 73 and has always been a go-getter. I plan on going with him to his next appointment and think maybe he should have a second opinion. The Dr also said something about starting a shot that may make him slightly sick to his stomach. Sounds like kemo to me but they didn't say that......

Thank you for your replies. I am not sure what his current counts are. He was getting Aranesp shots every 3 weeks which made him feel better but did not improve his counts. They did another bone marrow biopsy and said it hadn't change from the first done more than a year before. They quit the Arnaesp shot and gave him Neupogen. That did nothing so they gave him the infusion. He had another one last week. He quit taking the iron supplements but they aren't giving him anything for the iron buildup. They also gave him another Aranesp shot. At his last appointment they said they were going to quit all the shots because they weren't doing any good although he doesn't feel that bad. His Dr. is stumped because he actually feels pretty good. He is 73 and has always been a go-getter. I plan on going with him to his next appointment and think maybe he should have a second opinion. The Dr also said something about starting a shot that may make him slightly sick to his stomach. Sounds like kemo to me but they didn't say that......

Hey tmstoddard My father is also taking those same shots he is now down though to bolld transfusions on a weekly basis it is not good he is 83 so i guess im not sure what is left to do he is getting those two shots and the transfusions weekley his blood count was 6.9 this week it shoukd be between 14-and 18.

I was diagnosed with MDS in March. I was also concerned about blood transufsions but from what I understand that is not a problem unless you have MANY of them. Absolutely quit taking the iron supplements!!! I also thought my anemia would be taken care of with iron supplements but I was wrong. I am from Illinois and got out of Illinois as soon as I could. I am being treated at MD Anderson in Houston, TX. They are the best!! What is his problem with MDS? My main problem is red blood cells. Does he have problems with red blood, white blood or platelets? How old is your father? I am 60 and feel I am too young for this disease, but I have seen there are many people at MD Anderson with the same problems. There are so many questions you need to ask. What does your hemotologist say? What about treatment for him? I am on a promising drug to put my MDS into remission. Good luck to you and your father.

I wish you could ALL get to MD Anderson. This does not have to be a death sentence at all!!!! Get another opinion and don't go with what your doctor is telling you. There are so many promising drugs out there for MDS. Good luck to all of you. I know I am getting the best care out there.

Hello ariesnv and SusanB4 (and everyone else!)

Airesnv – how long has you father been diagnosed with MDS? Have they discussed giving him the kemo treatments? Best wishes for you and your father!

SusanB4 – He has quit taking the iron. I also read that eating dairy products and high fiber foods can slow down your body’s intake of the iron. His problem with MDS is all 3 counts. His white blood count is 2.4, hematocrit 25.8, and platelets 77. Actually his platelets have come up since being diagnosed. He is 73 and has always been extremely active. I went with him and my mother to his last Dr.’s appointment. I’m not sure if they don’t know what to ask or are afraid to know the answers. Anyway, so far he has only had 2 transfusions. The last one was about 5 weeks ago. The Dr. gave him the option of getting another right then but says he will definitely need one in two weeks. He says he feels fine. I told him not to try and tough it out; if he doesn’t feel good, get one! He is kind of stubborn that way. I also talked to the Doc about the iron and he said he is keeping a close eye on it and we talked about EXJADE if it starts getting high. I also asked about the pill he talked to my Dad about taking and he said it was Vydasia which is kemo. I have read quite a lot about Revlimid but he says that is typically for patients with type 5q and that is not what he has. I think that is good news isn’t it? I am glad that you get to go to MD Anderson. We live in Utah and I don’t know if going to Texas is an option.