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Public Support Group 960 total results
Discussions (72)
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...
Myelodysplastic syndrome (MDS) and skin itching
what can be done for extreme itching from myelodysplasia
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?
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...
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...
Anyone dealing MDS and how are you doing?
Hello Anyone dealing with MDS and how long and how are you doing?
Anyone else with MDS had a leg bleed?
Hi , Thankyou for allowing me to join. My husband aged 75 was diagnosed with high risk MDS in April 2025 , and started inquovy...
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...
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...
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...
My MDS does not respond to treatments. What's next?
Have not responded to any treatments, not about to try transfusions only, what can I expect. I am 77 years old.
Anyone have MDS + Hemochromatosis? Who specializes in both?
Hi, has anyone been diagnosed with MDS and hemochromatosis. Currently have a Dr. in Colorado that is retiring and thinking of going to MD. Anderson...
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...
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...
Anyone have both Myelodysplastic Syndrome (MDS) & Parkinson's?
Anyone dealing with these?
Diagnosed with MDS: What is Paradox Effect with azacitidine (Vidaza)?
After 6 months of treatment with Vidaza it appears that according to my doctor I may be experiencing a Paradox Effect. This effect is shown...
Anyone experience swollen and sometimes painful hands with MDS
Has anyone with MDS experienced swollen and sometimes painful hands. Seems to be random and not connected to any specific activity. If you have what...
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...
has anyone had Long Covid, before a diagnosis of MDS?
Husband (61 years old) just diagnosed with high risk MDS, and he has had Long Covid for 5 years (one of the first to get...
I have been diagnosed and under treatment for MDS
I have been diagnosed and under treatment for MDS. Whag are the treatments for MDS?
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