[LouiseAParticipant]

Dear Nicki,

I thought you may find it useful to know that my dad was diagnosed with IgM Myeloma in September 2012. We too had read all the published data on the IgM type and the information was pretty grim – mostly because of it being so out of date. Dad went on to join the Myeloma XI trial and had a few cycles of CTD and an SCT in March 2013. There were ups and downs but in the end there were not real serious complications but we always felt that it was his positive frame of mind that got him through it all. A year on and dad is still paraprotein free and I would say that my dad’s quality of life is almost as good as it was before we discovered this disease, except that he is a bit more vulnerable to the viruses going around during the winter.

My advice would be to keep reading this site, there is some fantastic support, and stay positive if you can.

I wish you both all the very best in your journey to recovery.

Louise

Louise

[tallulah55Participant]

Hi Louise

Thank you so much for your post, there’s always a lot of comfort when you hear a positive story and I was pleased to hear about your father and how well he is now. I’m wondering if he had any bone or kidney damage at diagnosis and what his para protein levels were? Does he realise what a rare entity he is! Was he misdiagnosed with Waldenstroms at the outset as Kevin was as I believe about 50% of all those with Igm are.

Im pleased to hear that he is doing so well after his SCT, a Kevin has just finished his 5 cycles of CDT, his pp level is 5 and he now has a month of hopefully getting back to normal a bit before stem cell harvest at the beginning of May and then SCT hopefully on 2nd June so all the posts on here are very helpful.

Best wishes to your father got his continuing stability

nicki

[LouiseAParticipant]

Hi Nicki,

Dad’s paraprotein was 47. The only bone damage he had was two slight lesions in the top of his head. He did not have any sign of kidney damage and all seems to be ok up to present. I told him about your message and he wanted me to thank you on his behalf for your kind comments. He said to tell Kevin that when he has the two or three injections to make his stem cells migrate from his bone marrow into his blood stream to expect a bit of back pain for a few hours. He didn’t know that this was normal so when he went to have his stem cells removed and mentioned the pain the nurse said “good it shows that the stem cells have migrated into the blood stream”.

As you probably know, everybody reacts different to the treatments, but the most important thing is to REMAIN POSITIVE, and when in the “pod” try to eat even though you feel sick and clean your teeth after every meal as well as take all mouth medication supplied to prevent mouth and gullet ulcers. My family wishes Kevin all the best and to encourage you and any family to remain positive. It is in some ways harder for us because we feel we can’t help.

My dad said that if there is anything else that they need to know he will only be too pleased to give you his experience. By the way, doctors initially thought dad to have non hodgkinsons lymphoma until they got the results of the bone marrow.

All the very best,

Louise

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