Anyone here suffering from myeloma?

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Hi is there anyone here  can give some insight on treatment for multiple myeloma and how it effects them ...if at all please 

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I’m Anne, one of the Community Champions here on the Online Community and I wanted to pop on to suggest that you also join and post in the myeloma group as you'll then connect directly with people who have this type of cancer.

    If you'd like to do this, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

    It would be great if you could put something about your diagnosis and any treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hello Happyplace, great name, always positive with Happy in the discussion.

    i have multiple myeloma, diagnosed in 2019, chemo in 2020.

    i self administered my own treatment, I won’t hedge it, at times 100 steroids a day, plus thalidomide, plus self injecting every day and twice, twice a week.

    this was so I wouldn’t have to attend the hospital every day.

    i lost weight, I was tired, a very little bit of hair loss, not much. BUT I am still here 5 years on.

    i have discussed my chemotherapy with others and everyone’s experiences are different.

    side effects differ from person to person 

    it all depends on age, physical condition, type of Myeloma and what Chemotherapy your experts give you.

    take heart, the NHS are great, they really looked after me and still are.

    tell people, don’t hide it, you will get a lot of support, tell them that you feel wonderful’ as I do, get support not sympathy.

    i have spoken to Myeloma sufferers who are still here 20 years after diagnosis.

    nothing is cast in stone.

    ask your doctor about anything you are conserved about.

    Be positive, look in the mirror at least once a day and say “I am blessed “ 

    I don’t know about your family circumstances, but friends and family will support you.

    live your life .

    with love and best wishes 

    mike

    Mike