What is Myelodysplasia
The myelodysplastic syndromes (MDS, formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varyi...
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Hi all, I just came across your group, and I am looking for information on this disease. My mother in law was dx several years ago with this disorder, and I am not really sure what this is all about.
She was treated with a chemotherapy for about a a year and a half with no real improvement on her white cell count. She finally opted for a second opinion, and now she was receiving blood transfusions about every 6 weeks for the last year. Or at least I thought it was every six weeks. Now I find out she has had 22 treatments since sometime last year, I think maybe around May, 2008. That is a lot of transfusions. Anyway, she has to now stop getting them because her iron numbers are high. I am pretty sure I am not getting most of the story, but from what I am hearing, and from what little bit of reading I have done, her choices of treatments do not seem to be working. What exactly is this disease, and what is the prognosis? Is it cancer, will it be cancer? Should she be seeing a cancer specialist? She is the push me and I will go type of person, her husband is push me extremely hard and maybe I will go. Do I need to, or get my husband to step in here? I do know she had a biopsy done, and that was ok, or so I think. But she is dx with this very confusing disease. Thanks for any imput you can provide to me. Sharon Posted on 04/01/09, 02:04 pm |
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Hi Sharon,
The Leukemia and Lymphoma Society (LLS) has a webpage www.leukemia-lymphoma.org/ that has excellent information on Myelodysplasia, written for patients and caregivers. They also recently sponsored a teleconference with one of the leading edge myelodysplasia oncologists/researchers (Dr. Alan List) and will be publishing that transcript soon. It was incredibly informative, and as up-to-date as you can get. I would suggest that you see if you can get your mother-in-law to an oncologist who specializes in cancerous blood diseases, which include leukemia and myelodysplasia. My first oncologist was a "wait and see" kind of guy, and I was transfusion dependent like your mother-in-law. I am also a single parent with a child to raise, so I am very motivated to stay alive and functional! So, I told him I wanted to get a second opinion, did so, and found a great oncologist who does specialize. It sounds like your mother-in-law could use a "third" opinion from someone who really specializes. My primary care physician hadn't even heard of myelodysplasia, so it is not a well-understood disease in the medical community at large. Even if they have heard of it, there are lots of options in addition to transfusions, and even different types of transfusions available. Iron overload does pose a problem, but the right oncologist should know about iron chelation, which helps to remove iron from the body. There may also be other ways to deal with iron overload. There are also new medications that work to help with white blood cell counts, including clinical trial options. The LLS website will give you more information about this, as well as what kinds of questions to ask your doctors. Best of luck, and keep in touch. Anne 
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I go to a good Oncologist, but I did not know you could find them, that actually specilized in MDS. Probably there wouldnt be any around my small town in Indiana
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Hi cnemeti,
Someone who specializes in leukemia will probably also be well versed in MDS because they have many similarities. It might be worth travelling to a larger town that has a cancer center to find a specialist. If you are not comfortable asking your oncologist, if you let me know where you live, I can ask mine how to find the closest center to your home. You could also try google... Anne
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I live in Mishawaka Indiana, which is close to South Bend. Like I said mine is a good Hematolgist, but I dont think he specialized in it.
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Have her talk to the doctors about a medication called ex-jade. My father gets frequent transfusions and takes this to counteract the iron build-up. Best of luck!
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Cnemeti,
Have you tried contacting the leukemia and lymphoma society? They would probably know which is the best cancer center close to you that works with MDS. Worth a try, anyway. A.
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Hi again to Cnemeti,
LLS didn't list a cancer center in Indiana (my mom lives in Borden ..) but there is one in Columbus, Ohio, and another in Chicago ... Illinois. Robert H. Lurie Comprehensive Cancer Center Northwestern University Steven T. Rosen, M.D. Director 303 E. Superior St. Suite 3-125 Chicago, IL 60611 Tel: (312) 908-5250 Fax: (312) 908-1372 I know nothing more about this center than the fact that it was listed in the LLS cancer center directory, but a with MDS, I sure do recommend a specialist. Chicago is big, Northwestern has an excellent rep; they quite likely have someone specializing in MDS. Might be worth a try? Anne
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Anne, Thanks so much for the info. I will check it out. I have 6 more days left here at Clinic, then I will have time to check out different places.
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