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I agree. If your insurance approves, and they usually will, Go to an MDS Center of Excellence and let them look at all your tests. A second opinion helps in understanding and getting options.NANCY GalbabreathParticipant
To all regarding low risk MDS
First, there is no such thing as low risk MDS – as most of us know. Low risk simply means the chances of turning into Leukemia quickly is low. Of course, Leukemia is more difficult to treat and is very aggressive. Anyone with MDS is in a risk situation, and you are right that there are very few treatments. Eventually researchers will know how to treat individual cases, but it will take years to get hard answers. Because people are now living longer, this disease is just starting to be acknowledged and explored – seems like the last 10 years or so. However MD Anderson and Vanderbilt along with several other MDS Centers of Excellence are beginning trials to help those with lower risk MDS. There are a few clinical trials going on. Also, some success has been discovered with BMT where the patient is not given massive doses of chemo, but rather less toxic doses that make recovery easier and seem to work in some cases. My reading indicates this is preferred for older people but I’m sure they will continue to explore for lower risk patients. However, please be realistic that there is only one cure, and that depends so much on luck – with a donor, other health issues and age.
My husband has low risk MDS extremely similar to what LeAnn described – affects only RBCs. He was diagnosed in November 2014 but was on watch and wait until his RBC started to go down November of 2017. He just started in a clinical trial at Vanderbilt with Decitabine pills. Decitabine is usually given to Intermediate/High Risk MDS patients with pretty good success for partial remission. Even though only one of his counts is presently affected, this chemo will lower all of them for a while, which means more RBC transfusions and risk of infections and more iron overload. He is one of the very few with low risk MDS patients to be accepted and it is a risk, but he does not want to live dependent on RBC transfusions and iron overload (which is almost as bad as MDS!) and may want to be considered for a BMT sooner rather than later due to age (63). So we will see what happens after the 90 day period. If the decitabine does work, it usually helps for two to three years, although many people have been symptom free for as long as 7-10 years. Hopefully, year by year they will find other options to treat this mysterious disease – – so time is important!
EThe one thing I would HIGLY recommend to all of you is that you get to an MDS Center OF EXCELLENCE (there are many) for evaluation and second opinion. Believe me, this is way over your local oncologist/hemotologists head!