Myeloma

[Temporarything]

Not sure why I’m posting tbh. 80 Y0 Dad has it but was 3 years into remission. He has to have a PET scan as they are worried about something that showed up on his spine on a mri.

Hoping it’s just spinal wear and tear but fearing the worst. If it has returned the thought of undergoing chemo during Covid is terrifiying

Just looking for a hand hold I guess or info from anyone who knows anything about MM.

Thanks..

[HildegardeCrowe]

OP my dear dad had MM too and died of it aged 88. It had been diagnosed about a year before. I’m so sorry you’re dealing with this and hope the news is good but if it isn’t, he may well need chemo. Why are you so afraid of him having chemo during Covid? My SIL has been having it for her terminal cancer. I’m sure you know all about MM and how it’s highly treatable but usually not curable. There’s a really good UK website for MM sufferers and their families - maybe you know of it? Sending you hugs and support.

[oneglassandpuzzled]

My mother was diagnosed aged 80 and her first round of chemo seemed to knock it back very well. But I know the feeling of wondering whether any odd symptom is another manifestation of it coming back. It’s such a varied disease and seems to affect people in very different ways. I hope you get reassuring news following the scan.

[annonymousse]

Watching with interest. My Mum (76) is waiting test results for myeloma. She recently fell and broke her hip and femur and they found some evidence to make them suspicious. I've been doing some googling and wasn't sure whether they would give chemo because of her age. I feel encouraged after reading this.

[oneglassandpuzzled]

My mother tolerated her chemo fairly well, annoymousse. She was on Velcade, cyclophosphamide and dextramethasone, as well as a bisphosphonate infusion. She did have some side effects which have been fairly long-lasting (peripheral neuropathy) and lost a lot of weight. But she was simultaneously nursing my father at home for a lot of the time. The treatment lasted for about 20 weeks, I seem to remember. During that time she had radiotherapy on a painful part of her back and had a fracture 'cemented' to provide a vertebra with support.


At her age (80 when she was diagnosed) she wasn't offered a stem cell transplant, but 18 months have passed now since she stopped her treatment and her bloods are good.

It's good that your mother is being tested. Getting on top of it quickly makes a huge difference. My FIL actually died of myeloma. He'd been having haematologist appointments for a year and a half but nobody thought to MRI him when he started having extruciating hip pain. Eventually his kidneys failed. They could have given him chemo like my mother had and spared him a lot of pain and perhaps given him an extra year or two of good quality life to enjoy.

[Walkingthedog46]

My late husband was diagnosed with MM at the age of 75 and he lived for 7 years. He was under the care of a wonderful Consultant Haematologist and underwent various sessions of chemo over that time. We couldn’t fault the NHS treatment he received and I will be forever grateful for that.

[Shieldingending]

Not sure if anyone is still checking this thread but I'm another one here with a parent who has myeloma. Dad was diagnosed 18 months ago and is reasonably stable at present