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Blood Cancers & Disorders Support Group

Public Support Group
577 total results
Discussions (41)
Living with MDS
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...
Last active: Nov 12 9:00pm
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
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 2:57pm
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: Jun 4, 2023
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 3:49pm
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 8:34am
MDS in a 75 year old male
First off, I want to thank Mayo Clinic and their Team of Doctors for treating my father who was diagnosed about 27 months ago with...
Last active: Nov 28 9:54am
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
Low Platelets with Myelodysplastic Syndrome (MDS)
Just got my platelet count for this month and it has dropped to 64000, I am really worried, I’ve also lost weight and feeling cold...
Last active: Jan 24, 2023
Newly diagnosed MDS-IB2 and vidaza
Mom is 87, newly diagnosed MDS… initially she agreed to Vidaza but now she is looking for first hand information on its side effects.. She...
Last active: 4 days ago
What are your experiences with lenalidomide (Revlimid) for MDS?
My MDS del 5q has deteriorated over the last few months. I've had one transfusion (Hb was 74) and am about to have another. I'll...
Last active: Oct 29 11:35am
MDS (myelodysplastic syndrome): When to start treatment?
My husband has lower risk MDS (SF3B1 mutation) MPN RS T . He has had chronic anemia that has been monitored for over a couple...
Last active: Dec 3 4:57pm
Anyone taking retacrit and releuko injections for MDS
My husband has been taking retacrit along with a growth hormone for his white blood cells. Any side effects we should be aware of?
Last active: Feb 1 9:17am
MDS: How to improve my condition in watch & wait?
I am a 76 year old male who was recently diagnosed with Myelodysplastic syndrome, ringed sidero blasts, multilineage dysplasia (MDS-RS-MLD). Although at this point, it...
Last active: Aug 3, 2023
Anyone have or heard of MDS with 5q-syndrome?
Hello everyone I have been told I have MDS5q Low risk, I have blood work done every 2 weeks.All they want to do is out...
Last active: Jun 18 10:35am
MDS-CMML-1: Anyone dealing with pruritus (itching)?
I have been diagnosed with MDS-CMML-1 and am experiencing bad Pruritus (itching) in the mornings/evenings and after I shower. Does anyone have the same symptoms...
Last active: Mar 26 4:40pm
I have Myelodysplastic Syndrome (MDS) spawned from ITP
I Have Myelodysplastic Syndrome (MDS) that spawned from Idiopathic Thrombocytopenic Purpura (ITP) which spawned from original diagnosis of Chronic Lymphocytic Leukemia (CLL). Now I don't...
Last active: Apr 27, 2016