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Myelodysplastic Syndrome Community

WELCOME TO THE MYELODYSPLASTIC SYNDROME COMMUNITY: This Patient-To-Patient Community is for discussions relating to Causes, Clinical Trials, Complications, Diagnosis, Living With Myelodysplastic Syndromes, Prognosis, Questions to Ask Your Doctor and Treatment Options.

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Hello everyone, My loving, wonderful, kind hearted, young father is critical in the ICU right now. Back story: My dad never gets sick or goes to doctor, this is his first hospital stay. He started feeling not well 3 months ago and thoug...
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Avatar universal
My Mom has been diagnosed with MDS at a younger age than what has normally been the case for MDS. So, I started a website to help our family. Please take a second and visit: www.gofundme.com/MOMwithMDS
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Avatar universal
I am 30 and just recently diagnosised with MDS. I have WBC at 1.7; hypocellular bone marrow and no iron in my bone marrow. I go to Moffitt in a week and a half but over the past few weeks I have been experiencing more weakness, extreme...
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Avatar universal
Hi! I am new to this site but not new to MDS, I have been on decitabine treatments for 6 months, my blasts are at about 5% they were close to 3% when I started. Not sure what to do now, nor is my onc. He is going to talk with Dana Farb...
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Avatar universal
I see some old posts. Anyone our there?
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Avatar universal
I have just been diagnosed with MDS with RCMD and I am currently at low risk for progression to AML. I am 72 years old and lead a fairly active life with frequent travel and good exercise habits. I was diagnosed with esophageal cancer ...
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17568 tn?1424977159
Cancer Therapy: Can It Hurt Your Heart? Thursday Aug 01, 2013, 12:00PM - 01:00PM (EST) For one day only, doctors from the Cleveland Clinic Cardio-Oncology Center will participate in a live, online health chat to answer your persona...
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Avatar universal
My wife has MDS. She primarily suffers from chronic leukopenia due to neutropenia. We are moving to an area that only has well water. I am wondering if we need to filter the water for the whole house or only our drinking water. Also,...
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Avatar universal
Hi, I'm fourteen years old and I lead a decently active lifestyle. About a year ago, I developed a strange sort of 'skin tag' (or what I think to be a skin tag) right inside my vagina lips. After about a month, a second one appeared. Thi...
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Avatar universal
My 15 year old nephew has MDS and is currently on dialysis as well as antifungal medicine. He is also getting UV treatment to kill any bacteria in his blood. He contracted a deadly fungus in his throat. During these past 3 days he has st...
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Avatar universal
I'm searching for support groups. I need to talk with others about their treatments, what they have tries as far as alternative treatments.
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Avatar universal
I have MDS, not receiving any treatment at this time. I'm in a "wait and watch" phase right now. However, I am dealing with a lot of fatigue. My oncologist/hemotologist claims that since I am not anemic, I shouldn't be so tired. Are othe...
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I have the blood disease Myelodysplasia, which in my case manifests itself by lowering my platelets and white blood cells. I am reluctant to undergo chemotherapy. Can anyone suggest a natural therapy that could slow the progression of th...
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My father aged 69 is suffering from shortage of Hemoglobin, RBC and WBC since May 2011 it was identified from Bone marrow aspiration at Apollo Hospital, Hyderabad. He is under treatment at Apollo Hyderab...
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Avatar universal
Hi, I've diagnosed with Myelodysplatic Syndrome (MDS) and ITP back in 2006. Since then I've also had a splenectomy and chemo treatments for possible Multiple Myeolma. Can anyone tell me what is the survival rate for someone with MDS.
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Avatar universal
Let me start with the following: a.) I am a bit of hypochondriac that being said, b.) 3 months ago I ran in a 10KM race. 2KM from the finish i had foot pain. finished the race (although it was extremely painful) and limped my wa...
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Avatar universal
My mother has been diagnosed with sever anemia. Iron, Vit B12, Folate levels are all normal. Doctors are waiting on results of a Bone Marrow Biopsy. Checking for Mylodisplasmic Disorder. Does anyone know what this is exactly? Wh...
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Avatar universal
My wife has MDS. She is 41 yrs old, and has been battling MDS for about 20 years. Recently, she was having bladder problems and had to undergo a procedure where they fill the bladder with liquid, and check for inflammation. For this p...
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Avatar universal
I have been sick for about 5 yrs it started with itchy head n body ears n nose got infected n eatn up n my neck on the back right side hurt so bad n I cud barely move it..Sence then I got a lump back there its not hurtn much but if touch...
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Avatar universal
I was diagnosed with myelodysplasia RAEB-1 of the red blood cells in February 2008. My hemoglobin ranges from 8.0 to 10.5. I am told by my hematologist that I should have no symptoms unless I get down to 8.0 or 9.0. Maybe I shouldn't b...
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