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Anyone have or heard of MDS with 5q-syndrome?
Blood Cancers & Disorders | Last Active: Jun 18, 2024 | Replies (18)Comment receiving replies
I started my 1st dose 10 mg lenalidomide on Monday June 3rd I will be going for a blood test 1 time a week for a period of time I am a kaiser patient in Hawaii and am finding it hard to get information met with cancer pharmacist was handed a packet of paperwork don't know much am hoping to get info from people thru this site
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My husband has the same form of MDS. He has been on Lucpatercept injections for over 2 years. He started Revlimed/lenalidomide in February. He also has periodic blood transfusions. The chemo schedule for now is 2 weeks on/2 off. He started out daily, then white cell count tanked. Then it was every other day. Now it’s the 2 & 2. He feels awful when it’s 2 weeks on. So fatigued & short of breath. The docs keep trying different dosing, but it hasn’t been easy. The upside is that his hemoglobin has remained fairly steady, 8.7-9.5. Do your research on all of the side effects & try to be very proactive in your care!! Best to you!