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Living with MDS (Myelodyplastic Syndromes)
Blood Cancers & Disorders | Last Active: 14 hours ago | Replies (257)Comment receiving replies
@nbadry
Thank you! Your response means a lot to me. It helps to know someone who has taken the medicine. How did they treat the neutrophils and platelets, and how did that side affect make you feel? Also, at what number did you start having transfusions? I'm mostly trying to figure out how soon I need to take the Lenalidomide. I'm staying steady between 10 and 11.
Replies to "@nbadry Thank you! Your response means a lot to me. It helps to know someone who..."
@ruthshow1
Sorry, I should add, my haemaglobin stayed in the 90s for about 2 years, with very few symptoms. From what I understand of del5q, your haemaglobin levels are unlikely to make big, sudden drops. (It usually happens more slowly, in increments if this remains your only mutation.) You've got time to think about it and talk to the doctor more. You could just ask that, given that lenalidomide is cytotoxic, what are the benefits of starting it now rather than waiting until you have some symptoms?
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@ruthshow1
I didn't need anything for the platelets. I just had easy bruising and petechiae. For my neutrophils (which got to 0.4) I had a few months of injecting myself with Filgrastim every second day. I didn't have any symptoms and didn't have any infections at all, which I was really thankful for. It wasn't a big deal for me. In regards to transfusion got the transfusions, I got them each time my Hb got below 8, but I did not function well at this level. I got good at knowing and would head off for the bloodtest before it could drop any lower. Initially I needed them about every 10 weeks, and this interval gradually got shorter over the course of 18 months. To be eligible for lenalidomide I needed to have 8 units of blood within 6 months. It took me 18 months of transfusions to get to this point. As I mentioned, if I had made the choice myself, I would've started the drugs before I needed transfusions (maybe at 85 or 90). Lenalidomide usually works within a few months for people with MDS del5q.