Support Groups

Blood Cancers & Disorders Support Group

Lock icon Public Support Group
902 total results
Discussion
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
Discussion
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 11:10am
Discussion
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
Discussion
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 7:16am
Discussion
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
Discussion
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
Discussion
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
Discussion
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: Aug 30 4:21pm
Discussion
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 9:09am
Discussion
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