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DiscussionLow hemoglobin and enlarged liver and spleen
Blood Cancers & Disorders | Last Active: Feb 5 10:14am | Replies (9)Comment receiving replies
Replies to "Hi @sherrylou, and welcome to Connect. It looks like you’ve been diagnosed with Myelodyplastic Syndromes or..."
Hi & thank you for the links. It really helps to stay informed & read & research about this very weird disease. Ihave been anemic most of my life but was diagnosed recently, on 12/26/24, after my 2nd BMB. I have MDS-RS Low risk SF3B1, K7003 ( which my understanding is a hotspot mutation). I haven't heard too much about this K7003 except in a couple of articles. From my understanding my mutations have a pretty good outlook but I've also come to find out that this cancer can be unpredictable. Some treatments work for some but not for others. I've had my 1st treatment of Reblozyl on 1/3/25 & was supposed to be every 3 weeks but got horrible vertigo/dizziness . On the other hand from just that one dosage I'm no longer anemic as of my last visit. First time in my life I can ever remember not being anemic! So the doc rescheduled the next treatment until 2/20/25. I'm so glad my hgb went back to normal but I must say I've never been so tired in all my life! I don't really understand that. I'm very appreciative to have found this group & others. To know I'm not alone, to share experiences & knowledge & maybe give us hope.