Support Groups

Blood Cancers & Disorders Support Group

Public Support Group
456 total results
Discussions (36)
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: May 17 5:49am
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
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: Dec 24, 2023
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
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
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
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: 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
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
Myelodysplastic Syndrome (MDS): how to increase red blood cells?
is there a natural alternative that has shown success in promoting more red blood cells. Currently I am receiving shots of Vidaza but not helping...
Last active: Jun 11 9:33pm
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
MDS treatment options other than bone marrow transplant
I have been diagnosed with MDS and bone marrow transplant is not a option. What are some other treatment options?
Last active: Mar 31, 2023
Myelodysplastic syndromes (MDS): When do you need to start treatment?
Wen do you need to start treatments for this disorder an wat best treatments are there
Last active: Dec 28, 2023
MDS: Can someone explain how or why platelets go up or down quickly?
Can someone explain how or why platelets go up or down quickly. My diagnosis was MDS after a bone marrow biopsy and I was sent...
Last active: Apr 20 11:21am