New to MDS

[Liz Buckley]

Hi, my mother (83 y/o) was just recently diagnosed with MDS back in February. She is severely anemic and her platelets are low. She has been getting transfusions of both for the past few weeks. She has also been diagnosed with a gastric ulcer. He biggest problem now seems to be her right wrist becomes swollen and very painful to her. Outside of the thyroid medicine she has been on for years, she started taking injections of Aranesp every other week. Has anyone else dealt with the wrist thing? I am trying to see if this could be a reaction to the transfusions or something. Any insight is welcomed as I am still learning about this disease.

Thank you

Liz

[Anonymous]

Dear Liz, Thank you for your post with information regarding your mother’s health. I know this is a difficult situation for you and I would recommend that you take her to one of our Centers of Excellence in MDS for a second opinion. She should be very carefully assessed before undergoing any treatment. We want to make sure she is not being undertreated when there may be options to help her with her quality of life issues. Benefits versus risk analysis should be done with any treatment.

Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.

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