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Discussions (78)
MDS and anemia
I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel...
Last active: Jan 11 9:18pm
MDS with anemia
I was diagnosed in April. My hemoglobin dropped to 9.3 and my doctor suggested I start taking injections of a hormone. I've had one injection...
Last active: Jan 15 11:27am
MDS and Neupogen
After an introductory stay in hospital about a year ago I have self injected expensive stuff, neupogen. One jab a week most of the time....
Last active: Mar 1, 2019
MDS and thyroidectomy
I have MDS iso del 5q. Currently I'm just being monitored, with a slow decline in haemaglobin (currently 90). I also have a benign multinodular...
Last active: Jul 2, 2023
Diagnosing MDS
As some of you may remember, this journey started for me "formally" (meaning it was caught then, but I had low platelets for at least...
Last active: Jun 20, 2025
MDS and cognitive decline
Just curious, if there is less oxygen going to the brain as a result of lower levels of hemoglobin, will that cause cognitive decline?
Last active: Jan 2, 2025
IPSS Scores for MDS
Hi I am wondering if anyone can help me determine my IPSS score for MDS. I have a copy of my Bone Marrow Biopsy test...
Last active: Jan 7, 2024
Neuroendocrine insulinoma and MDS
my mom has been fighting a pancreatic neuroendocrine insulinoma, well differentiated grade 3 tumor in her pancreas with metastasis to her liver for the last...
Last active: Nov 29, 2024
UCARE coverage and MDS
We're looking for coverage for my husband. He has MDS MPN. We heard UCARE is good and covers well. Anyone have experience? We're in MN....
Last active: Dec 19, 2024
Living with MDS (Myelodyplastic Syndromes)
I finally got my answer to what I have and trying to wrap my mind around it.I am an ovarian cancer survivor of 20 years...
Last active: Nov 8, 2025
I have mds AND Parkinsons
I have Parkinson’s,I had bmt for leukaemia 16. Years agoThe cancer has returned as mdsAnyone else has
Last active: Nov 9, 2025
MDS diagnosis with DDX41 Germline and Somatic
For the last 6 months I've been going to a Hematologist to determine the cause of my low WBC, low platelet count and low B12...
Last active: Jan 7 7:22pm
B12 deficiency mimicking MDS
4-months ago I went for a full blood workup, 1st one in 7-years. To my surprise my WBC was 1.6, Platelets 75, Hemoglobin level of...
Last active: Nov 28, 2025
Looking for experiences with the progression of MDS
Good morning ,I am looking for shared experiences with the progression of MDS and or other blood cancer. What are signs and or symptoms to...
Last active: Nov 30, 2024
Mantle Cell Lymphoma and MDS (RARS)
Has anyone been treated for a combination of these? About 8 years I was diagnosed with MDS ( refractory anemia with ringed sideroblasts). Mantle cell...
Last active: Sep 25, 2022
imetelstat/Rytelo MDS treatment anyone?
My husband has MDS & has been on luspatercept for almost 3 yrs. He is now transfusion dependent. His doc is going to start treatment...
Last active: Sep 5, 2025
What Caused MDS in My Case?
My doctor shies away from answering my questions about the probable cause of MDS in my case. I guess this is pretty normal for most...
Last active: May 25, 2025
MDS 80 yr old male
My dad is 80 yrs old...last July he got sick with pneumonia...admitted to hosp and labs were off. After a month or so a d...
Last active: Nov 19, 2025
MDS with sideroblasts and trying Lospatercept or Elritercept?
Nothing working....Procrit, Lenalidimide, or Vidaza...heard about Elritercept in Europe, and Lospatercept and Imetelstat. What does anyone know?
Last active: Aug 1, 2025
Life Expectancy of MDS-1 Patients
I am an eighty-five year old man on dialysis with MDS-1. Overall, I feel fine, but recently I am starting to feel lifeless, no energy,...
Last active: Oct 12, 2025