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Anyone have or heard of MDS with 5q-syndrome?
Blood Cancers & Disorders | Last Active: Mar 22 9:54am | Replies (35)Comment receiving replies
I know how you feel - I was diagnosed with this on 4/05.2024 - I already had a stroke at the end of September 2024, due to too many injections and Revlimed. I have had four (4) blood transfusions since June 7, 2024.
I do not have any heart issues, as my PCP had me on a heart monitor for 28 days in October to November 16, 2024. Heart issues all in the normal range.
Now, because I was going every other week, it was not enough for me! I am going back every week for labs and only twice for injections. I told my oncologist if I end up in the hospital again, I won’t make it out!
I am seriously thinking about getting the bone marrow transplant if I can go to Mayo Clinic in Jacksonville Florida, as my only son lives about 20 minutes away. I still work a full time job and they are not messing with me because I am doing my job to the best of my abilities.
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Good morning, @usmcmom. I’ve been reading through several of your posts about your diagnosis with MDS almost a year ago. What’s troubling me is that you’ve mentioned a couple of times that you’re asymptomatic…that means without symptoms. Which surprises me because with requiring weekly blood labs, frequent transfusions, taking meds to increase your red blood cells and your white blood cells, from personal experience with AML, those are definitely symptoms of your diagnosis.
If you’re thinking about having a BMT at Mayo-Jacksonville, here’s a link to get you started with initiating a request for an appointment. You don’t need a referral but it can help to have one from your oncologist. http://mayocl.in/1mtmR63
Do any of your blood tests show the presence of blast cells?