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Living with MDS (Myelodyplastic Syndromes)
Blood Cancers & Disorders | Last Active: Dec 27, 2024 | Replies (98)Comment receiving replies
Have been diagnosed with Mylodisplastic syndrome. How serious is this. Am very short of breath - any connection? What are treatment options?
Replies to "Have been diagnosed with Mylodisplastic syndrome. How serious is this. Am very short of breath -..."
Welcome, @jschellhaas. It is scary to get a new diagnosis. To help you connect others living well with MDS, I moved your questions to this existing discussion:
- Living with MDS (Myelodyplastic Syndromes)
https://connect.mayoclinic.org/discussion/living-with-mds/
Click the link to read previous posts about MDS and meet members like @katgob @momz @nbadry @rrivory @honeymae @nylechojnacki and many more.
@loribmt provided links to helpful articles about MDS in this comment: https://connect.mayoclinic.org/comment/925760/
What chemo did you doctor suggest? Did you discuss other options too?
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jschellhaas.
I had MDS. Mu diagnosis last October 2023. The first thing my hematologist did was schedule me for a bone marrow biopsy. That confirmed the MDS. If you had a BMB I would hope your medical team has given you treatment options. They need to see in your blood if there are blasts or other changes that will in time cause more issues.
Go to the subject line above and enter MDS. There are a lot of us here. For me, I had breast cancer 2 years before with a genetic test done finding the BRCA2 mutation. I was given a few choices for my MDS. I had a TP53 mutation too. I did not have the symptoms you describe, yet. Watch and wait or a Bone Marrow Transplant. I thought just a bit of time as i absorbed what my Dr. had told me. At first i was thinking he was kidding. Maybe he got it wrong? I did not feel bad. I did though seek out a hematologist as my platelets and white cells were at the lower end of normal and kept going down. I was no longer in treatment for BC, so why did my blood not recover? That is what i thought of when my dr gave me the choices.
I looked at him and said i want to do the BMT. He said he would activate my name on the Bone Marrow Registry. Within 2 months i had 6 potential matches. One was eventually chosen as the best selection and on April 9th, I received the transplant.
In the end every one of us has a different body. Your blood and body will show where you are with the MDS.
On this site, you will find many stories. Some who have done watch and wait.
Put MDS above in the search and watch the stories that pop up.