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High Grade MDS with 2 genetic mutations

Home forums Patient Message Board High Grade MDS with 2 genetic mutations


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    Kathy Brown

    My husband was diagnosed May 2019 with high grade MDS and is not eligible for a stem cell transplant because of underlying conditions. He has had prostate cancer twice. The first time he had radiation and the second time he had cryosurgery. I am so confused by what’s going on and if it’s normal for MDS. He was initially given 2 yrs before he would have AML. Then they sent his bone marrow biopsy to Mayo Clinic and it showed he has 2 gene mutations. He started chemotherapy May 22, 2019. He receives Decitibine for his chemotherapy drug and also receive blood transfusions and 2 growth factor injections. The injection of Darbopoetin is for his red cell and the Neupogen is for his red cells. Since July his red and white cells and his platelets, hemoglobin and AINC have gone up, but are still very low His chemotherapy was cut back to 3 days from 5 days, every month. Since the end of July he hasn’t needed a blood transfusion. However, he complains of extreme weakness, fatigue and shortness of breath and sleeps SO much and then he has days where he can’t sleep. He also has lots of joint and spine and his pain and severe headaches and complains that his vision is worse. His Oncologist says he shouldn’t have joint or bone pain or headaches with MDS. Is this normal? Has anyone else seen this with their loved one? He has no energy to do anything but lay in bed and/or sleep. He still eats well most days. He no longer drives after getting confused and putting our truck in reverse and hitting our house and damaged the garage wall of the house and doing several thousand $ of damage to our truck. His memory has gotten horrible and he shuffles slowly when he walks. I just have trouble understanding MDS especially when his Oncologist says these things aren’t from MDS. He’s going to be 69 yrs old next month.

    Pat Mathews

    Is it possible that he has/is having mini strokes? If you exclude the MDS the symptoms suggest stroke.

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