Anyone diagnosed with Multiple Myeloma ?
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maglil55
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My brother has it but he is not diabetic. He's 5 years since diagnosis and was the 2nd worst level of paraprotein they'd ever seen. He's had 2 stem cell transplants and has gone on to a clinical trial when he came out of remission 6 months ago. It has worked well and he is back in remission again. Once he got over that "incurable " does not mean "terminal" he started living a normal life again. The Consultant keeps stressing it is incurable but very treatable. The other thing about Myeloma is everyone is different but when it comes back if the concoction you are on has stopped working they change to another one. Also they have made a massive amount of progress in recent years.
There are side effects obviously but he has learned to live with them.
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@maglil55
Thanks for the reply, this is very much along the lines of what the Doctors are telling me. I am still waiting for the final report on the Bone Marrow tests, but everything so far is pointing strongly to positive Multiple Myeloma.
I am due to do a few more tests and will probably start treatment in the next week.
I'm not expecting it to be easy, but as you say there are many options available to bring it to remission.
How old is your brother if I may ask. they only appear to do stem cell treatment if you are under 65 years of age, but I have not confirmed this
Thanks for the reply, this is very much along the lines of what the Doctors are telling me. I am still waiting for the final report on the Bone Marrow tests, but everything so far is pointing strongly to positive Multiple Myeloma.
I am due to do a few more tests and will probably start treatment in the next week.
I'm not expecting it to be easy, but as you say there are many options available to bring it to remission.
How old is your brother if I may ask. they only appear to do stem cell treatment if you are under 65 years of age, but I have not confirmed this
maglil55
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He's 69 but will be 70 soon. He was over 65 when he had the stem cells. They decided to do it as he was fit and otherwise in good health. Because the paraprotein count was so high they did 6 months of a chemo cocktail to bring the count down. They then do the harvest. Brother said the injections to increase the stem cell harvest was the worst bit. You then get a high blast of chemo and you are into isolation. They then put the harvest back. They are very careful over infection. 1st stem cell he had full remission for 1 year which was not bad knowing where he started. 2nd was almost 2yrs. There's one that has been in remission 13 years so far. As I said everyone is different. He reacts well to the chemo. Any questions you have feel free to ask.
Soplewis12
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My pop in law had non hodgkinson lymphoma & is type 1 diabetic. He had his initial stem cell replacement which unfortunately wasn't affective, he then had a donor cell replacement which has been a great success, he is fit & healthy. His diabetes was supported the whole time by his healthcare team, all working together. I'm sure everything possible Will be put in place to support you. Wishing you all the best.
