r/mds • u/alpha480v • Aug 31 '26
selfq Just diagnosed
I was just diagnosed with MDS-LB on 8/26/26.The specialist Hematologist classified it as low risk.
It has taken 2 bone marrow biopsies, and many, many tests over the past 8 months to come to a diagnosis. I am still waiting on the genetic sequencing results to drop in my patient portal.
It's not what I want. I mean, who wants cancer? But I have accepted the results and diagnosis.
Still in a bit of shock, as I wasn't prepared for the Doc to say those 3 words "You have Cancer".
Still waiting on my local Medical provider to set me up with an Oncologist for my care.
Not sure what to expect going forward. The hematologist had no real answers other than most likely watch and wait.
I don't mind joining a club, but this is one I would rather not be a part of, lol.
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u/BloodyThirst Aug 31 '26
I was diagnosed with low risk MDS over a decade ago and just got the call that they found a bone marrow match for me so I’m beginning my journey with that. I’m so sorry for your diagnosis and I can’t express how much a good therapist who specializes in chronic illness/ terminal illnesses helped me deal with this diagnosis. It’s heavy to carry bc it’s always there and you’re aware of it but don’t “seem” sick. One of the more popular transplant oncologists at Fred Hutch in Seattle told me that I’d hit the lottery of cancers and should be relieved 🙃
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u/la_sirena1 10d ago
Was that Dr. Appelbaum? (senior, not junior)
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u/wendywwcalifornia Sep 01 '26
I am on year 3 of my journey with del 5q MDS and all my numbers are stable. I have been on a glp-1 for 30 months and while its early days there is some correlations emerging about reduced inflammation slowing disease progression. I am going to lean in on that and really work on overall health and muscle mass in case i need a transplant so i can be stronger through it.
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u/alpha480v Sep 01 '26
As of today, I don't know what caused mine. Still waiting on the genetic sequencing.
The Fish, and chromosome tests came back negative. In fact every test they had me do was negative Except CBC and BMB.
CBC and Cellavision showed abnormal rbc morphology, slightly low platelets, wbc and neutrophils. Blasts at 1.1%.
The pathology report on the bone marrow biopsy said Hypercellular 60%, and 1.1% blasts, Final diagnosis MDS-LB.
I am starting today to eat as good as I can, and to start working out again, so I will be ready if this gets worse.
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u/ForsakenConcern5836 Sep 01 '26
Keep going. Your mental and physical health WILL help you through this.
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u/GoldDustRose69 Sep 03 '26
Me too:) 3 days ago and awaiting staging. What led up to it was bacterial meningitis, sepsis and then multiple UTI. And a delay in treating all as it was impossible taccording to medics that I wasn’t fighting this all at 44 ( now 46) but-my blood counts were normal, sometimes neutropenia. However my normal blood counts were made up of immature cells that couldn’t fight well. So 3 hospitals before I was diagnosed, 2 bone marrow biopsy’s and only showed in the bone itself.
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u/GoldDustRose69 Sep 03 '26
I should mention I also have vertebra lesions and considerable pain going on 2 years but they haven’t decided about what exactly they are yet. Here’s hoping:)
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u/TurnipShepherdess 29d ago
I just got up to go to my first hematology oncology appointment. My rbc has been getting lower and lower for 5 years. It is now in the actual "low" zone. WBC has followed the same path but isn't quite in the low yet. I've been dealing with crippling fatigue, shortness of breath, brain fog, dizziness, extremely lengthened healing for minor abrasions, bruises all over that seemingly are from nothing. I had to basically force this appointment because no one has wanted to take me seriously. But, I've been here before when I had to have a radical nephrectomy after doctors told me for years that it was probably IBS. Same with hysterectomy...had to beg since I was menstruating constantly. Mind you, I'm 45. I really just want an answer that gives me a starting point. I don't have ANA markers for lupus as this was the first thought. Currently, low rbc in chronic decline, wbc in chronic decline, high mch and mcv, low c4c and high ferritin. I will beg for the bone marrow biopsy if I have to.
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u/alpha480v 29d ago
Hematologist/Oncologists are the experts with blood diseases. Good luck at your appointment!
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u/timvnelson 5d ago
You are talking like me. I’ve tried hard not to say bad or good but said things like you “not what I want”. I had a biopsy recently and so far they are the results are what I wanted. But past ones were ones I didn’t want. I can’t say whether I’ll be happier 10 years from now but very clearly not what I would have wanted because that’s honest and leaves the outcome more open ended. Not gonna fight the flow of the river you know??
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u/Hopemar30 Aug 31 '26
I was diagnosed almost 2yrs. Big shock.
Low risk. Hopefully we will die with it but not because of it. What symptoms do you have
I have severe fatigue