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@loribmt

Hi @sherrylou, and welcome to Connect. It looks like you’ve been diagnosed with Myelodyplastic Syndromes or MDS for short. This is a group of disorders caused by blood cells that are poorly formed or don't work properly. Through blood work your doctor has determined the mutation and risk level of your disease. Having a low risk is an encouraging diagnosis.

There are some active discussions in the forum with other members who also have MDS. Here are a couple of links to get you started.

Living with MDS (Myelodyplastic Syndromes) https://connect.mayoclinic.org/discussion/living-with-mds/
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Myelodysplastic syndromes (MDS): When do you need to start treatment?
https://connect.mayoclinic.org/discussion/mds-2/
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This is a little informational article about MDS from Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
How long ago were you diagnosed? Are you involved in treatment for your MDS?

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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.