Multiple myeloma

[OutbackQueen]

Does anyone have any experience of multiple myeloma please? My dad had it and now my brother has been diagnosed and I’m terrified of getting it myself and passing it in to my DD. There seems to be some sort of family link but the science is unclear. Myeloma is incurable and I’m almost suicidal over this. I feel really selfish and pathetic but I have severe health anxiety and just can’t function.

Myeloma is incurable but very treatable. Some doctors believe it is becoming a chronic illness.

My mother has had it for four years plus. She is 84 now. My FIL died of it about seven years ago--but that was because he didn't really understand that he had a precursor to it: MGUS, and he didn't connect it with his bone pain and insist on more scans. Another cousin in Australia died of it, too.

Because of our family history I was concerned about my children. But my mother's consultant doesn't think it's necessarily a question of inheriting genes, though. More older people are being diagnosed now, because more people are living to an older age. There's a very good Myeloma UK charity and also a UK Facebook page: UK Myeloma Support Group. On the FB group there people who've had it for a decade. There are many, many combinations of treatment now and more seem to be appearing every six months!

www.facebook.com/groups/408542472584923

Facebook Myeloma support group link.

My mum has MM since 2013. She's doing really well.

A family member has this and was diagnosed in 2011. He is very active and doing really well, now in his mid 70s. Had a stem cell transplant in his mid 60s. He travels, looks after grandchildren, goes on long walks and bike rides, lives a full life. It isn't curable but can be treated/ managed well.

Thank you, I’m encouraged by hearing your experiences ad glad that your loved ones are doing well.