Whether you’re newly diagnosed, in treatment, or caring for someone with myelodysplastic syndromes, this is your space to connect, share, and feel understood.
💬 What’s one thing you wish more people knew about living with MDS?
4 reactions Whether you’re newly diagnosed, in treatment, or caring for someone with myelodysplastic syndromes, this is your space to connect, share, and feel understood.
💬 What’s one thing you wish more people knew about living with MDS?
4 reactions Hi, my name is Mickey T. I'm here because I have a very rare blood cancer, Polycythemia Vera. I am looking for support and new knowledge regarding this disease. I have been battling this cancer for 6 years now! I am a high-energy guy; but lately have had extreme fatigue, deep bone pain, leg cramps at night, & a high number of times to urinate at night!
Have any of you been diagnosed with Myeloproliferative Neoplasm Cancer? There are 4 types, three of those are manageable and one is terminal. The PV that I have is the terminal one!
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Hi, my name is SavageDad. I'm here because I have recently been diagnosed with a rare blood cancer on June 28th this year. I am concerned for my wife and kids both going through this process and after I’m gone. I have a great deal of anxiety and some of the symptoms of the cancer plus side effects of the chemo, immunotherapy take a toll on me where I feel I have very little to give.
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Hi all I'm a blood cancer survivor .it's 5 year's now but I still get bad headaches and continuing body pain sometimes it's terrible after so long. It's getting me down badly I try to be happy for my wife but man . I'm told the cancer will come back by my specialist damn it's tiring. I lost my daughter in 2016 with cancer any coping ideas appreciated.
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It's been almost 5 years,since I started cancer treatment .it was non hodgkins lymphoma. I had chemo for 1 year and immunotherapy for 3years last immunotherapy was 12mnths ago I have regularly blood tests. I feel very fortunate but I still get bad body pain, tiredness to the extreme, at times a terrible memory. Do others have similar, I would be grateful for any thoughts
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Hi, my name is AnnieJess12B. I'm here because my husband died nine weeks ago after over seven years of multiple myeloma (a blood cancer). For the last year of his life I was a full time carer, leaving me completely drained both physically and mentally. I have been busy sorting through all of John's things and trying to 'get my home back' in some kind of organised way. I neglected many home chores while running him back and forth to the hospital or visiting with food and clean clothes.
How have others managed their grief while trying to get back their own lives? I'm still quite teary at times, especially if someone is overly sypathetic to my new widowed state.
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