Support Groups

Blood Cancers & Disorders Support Group

Public Support Group
727 total results
Discussions (52)
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, 2024
Anyone living with MDS Extended diagnosis experience?
Age 70, diagnosed with MDS Extended. Had NHL 2006 chemo and in 2008 chemo then auto transplant and good to go until Thanksgiving 2024 low...
Last active: Jan 19 9:57am
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: Feb 28 10:17pm
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: Mar 22 9:54am
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
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: Sep 1, 2024
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: Jan 14 9:06pm
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: Aug 5, 2024
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, 2024
Use of Neupogen (or similar) prior to minor surgery
Has anyone with MDS used Neupogen (filgrastim) or similar prior to minor surgery to reduce the risk of infection? My concern is that even a...
Last active: Aug 3, 2021
Myelodysplastic Syndrome and Sjogren's
I have been studying MDS and SS (both of which I have) and am beginning to see an overlap. I would appreciate others input.
Last active: May 24, 2024
has anybody used epoetin alfa (Procrit)
my husband has RAEB and was recently put on Procrit. Does anyone have any experience with this drug for any of the MDS diseases? Am...
Last active: Sep 26, 2017
Aplastic Anemia and vaccine influences
As a recent (12 mo) MUD stem cell transplant recipient I am faced with making a decision on pursuing a COVId vaccine. Prior to diagnosis...
Last active: Apr 24, 2023
Side effects of Vidaza injections
My mom who is 85 was diagnosed with MDS in 2019. Started with anemia and now progressed to CMML 2. We started 5 days of...
Last active: Sep 30, 2024
I am newly diagnosed with AML. with the inv(3) mutation,
I am Vicki, age 71, and was diagnosed with AML this month. It started with an MDS high risk after biopsy in April. Has since...
Last active: Oct 14, 2024