Handhold please. Myeloma.

[Changingforthisone1]

My wonderful dad has just had a myeloma diagnosis and I'm trying not to spiral.

He is 66, fit as a fiddle and strong as an ox so it's an absolute shock to us all.

He is going to shortly start the 2 injections a week treatment but it's all so alien to me and I'm staying away from Google wormholes as far as possible.

My dad is my absolute hero and I don't want to lose him.

Any positive stories and virtual hand holds very much welcome.

Jumping on this thread too as my mum has just been diagnosed at 67. She’s fit and ‘well’, we thought she had arthritis but an x ray revealed a large lesion to her pelvis. I’m 26 and full of worry for the years ahead. My mum is due to start treatment next week.

My mum just started treatment yesterday. All so scary. Here if you want to chat!

Wishing your mum the best of luck! Is she going down the SCT route?

And to yours @s11o

She's having 4 months of DVTD chemo treatment and then a SCT (which I am absolutely terrified about!)

How about your mum?

Where in the country are you? We are in Greater London

Hope you are doing ok. It's such a shock to us and the unknown is scary. X

My mum is having induction therapy but she is 68 this year so still unsure about SCT going ahead. How old is your mum? We are in Wales. My mum is awaiting some radiation to her lesion on her pelvis but has been given the nearest available which is April 🙈 has your mum got any lesions? It feels like a living nightmare doesn’t it? X

@s11o

Absolute living nightmare!

So my mum in July complained of leg pain, we all thought sciatica. Went GP etc, given painkillers etc. It gradually got worse. We went private to an Orthopaedic doctor who assumed it was osteoarthritis but said he will do an MRI. That found a lesion on her left femur.

Unfortunately soon after that discovery, the lesion caused her leg to break as it ate away at the bone. She was in hospital bedbound with a broken leg while they tried to figure out which type of cancer it is. She was in hospital for two months. Only recently they told us it is MM.

My mum is 67 and they are keen to get the SCT done. But I'm terrified!

I keep reading Facebook forums etc and usually alot of people respond well to treatment, SCT or not.

Let's pray 🙏🏽

Gosh April is so far away and time so goes slowly when you want it to go so fast!

How is your mum feeling about all of this?

Feel free to PM me if you would like. X

My DH has Myeloma. He’s 62. 60 at diagnosis. No one believed he could be so ill so by the time he was diagnosed he had 5 broken vertebrae and was bed bound.

It’s been a rollercoaster!

He was too weak for the stem cell transplant so we were reliant on the new treatment plans. It’s in remission for now, but we wait with bated breath each month when the bloods come back.

He has bone strengthening drips once a month which have made him mobile again :). He qualifies for full PIP so was able to get a suitable car for him so he can drive again.

In the last year he’s developed COPD, because he’s hunched his lungs are very restricted. He also fought bladder cancer! They also suspect prostate cancer too due to a shadow but he’s had enough of being poked and prodded for now.

You’re more than welcome to message me direct if you want to chat or ask questions xxx

Just seen this is a revived thread so offer stands to you too @Hazzyyy

My next door neighbour is currently being monitored for Myelonma, he is 69.

It started with him feeling tired and run down about a year ago and routine bloods identified abnormal blood protein cells and it’s developed from there.

He had a lumbar puncture just before Christmas which shows that the levels of his abnormal cells are climbing and they have said that the fully except him to meet the threshold for chemotherapy treatment when he has his levels checked again in 2 months time.

He’s staying quite perky about it as apart from feeling tired he wouldn’t think anything was wrong with him, he doesn’t have any symptoms that affect him and the Myeloma Specialist Nurses have been quite positive with regards to his prognosis in terms of how little it will probably impact on his quality of life (even when treatment begins).

As a previous poster has said, in the right circumstances it’s a treatable cancer that can be lived with, even if it cant be cured.

I’m sorry about your dad’s diagnosis OP, it must be very upsetting but I hope this thread has reassured you a little.