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.

Hi. My Mum was diagnosed with Myeloma at 65 in 2013. She is doing fine, really active no major issues at all. 3 relapses all dealt with early and resolved quickly. If you want to talk let me know

My relative, sadly passed away now, lived many happy healthy years after the diagnosis. They started to deteriorate about 8-9 years later, then lived with some limitations for a further few years after that.

Sending you and your Dad lots of love and prayers

Thank you @1diamondearing and @Therunecaster. I know it's not a death sentence but just such a shock. He went for the bone marrow test many weeks ago and I really thought that no news was good news.

He was his usual pragmatic self and even making jokes but I know my mum was upset too. They're 300 miles away which doesn't help. I'm going to see them next weekend and need to pull myself together before then.

So sorry to hear that.

I lost a relative to myeloma age 63, it can be an aggressive cancer. Stay positive but also spend as much time as you can, as you need, with your dad and your mum. And take the time to let yourself absorb the news - it’s a terrible shock.

A friend of ours has been living with myeloma for years.. really living.. travelling the world and enjoying life. It may not be curable but it’s treatable and livable and hopefully won’t stop your fit dad from enjoying life.

I'm sorry to hear of your dear Dad's diagnosis - I understand what a horrible shock and worry it must be. Wanted to offer a handhold. I'm afraid I lost my Mum to myeloma (sorry, of course not what you want to hear right now) BUT she was really unlucky, she had a particularly aggressive type and everything that could have gone wrong did, unfortunately.

Despite this I wanted to offer you some hope - myeloma, although not technically curable, is very treatable and plenty of people live very many years quite comfortably with it. The fact that your Dad is fit, otherwise healthy and relatively young puts him in a strong position. There are also lots of treatment options. It's a relapse remitting cancer - which means there are periods of active illness which require treatment, hopefully then with periods (which can be long!) of the disease being under control and not requiring treatment at all, where life can often be lived normally. New treatments are always being developed too, and don't forget that things like 10 year survival rates are taken from people who were diagnosed at least 10 years ago! A lot changes in a decade.

I would try to stay away from Dr Google if you can but you may find the charity Myeloma UK very helpful - lots of information and support there, I really relied on them.

Sending gentle, unmumsnetty hugs, and wishing you and your Dad all the very best.

Thank you. This is lovely. He actually has a big trip planned at the end of the month and they've agreed his treatment can start when he gets back, which I'm hoping is a good sign.

Thank you. And in sorry to hear about your mum x

Ahh, I completely understand the shock you're feeling right now — I remember that same feeling all too well when my dad was diagnosed back in 2018. It turned our world upside down at first. But I want to offer some hope — he's still going strong today. He's had three rounds of radiotherapy over the years and is on a low dose of ongoing chemotherapy, but he’s living a really good life.

Since his diagnosis, he’s even been on several cruises! He does get tired more easily and usually needs a nap during the day, but overall, his quality of life is still very good. Although this cancer is technically incurable, it's treatable — and that’s true for many people.

One thing I’ve learned along the way is to try to avoid Googling too much — so much of what’s out there is outdated or unnecessarily scary. You're not alone in this, and there is a lot of support and hope out there.

Thanks so much @ILikeFreesias, really lovely to hear your dad is doing so well.

I managed 2 hours at work today and had to ask to go home, I'm hoping once the shock has worn off I'll be a little bit more with it.

I was like this at first, it’s such a huge shock. Take care of yourself too. In the early days I spoke to a counsellor from McMillan Cancer support which really helped me. If there’s anyway I can help, please keep posting on here. Sending best wishes to you

Thank you @ILikeFreesias , I may take you up on that. My dad has already been assigned a Macmillan nurse, I didn't know they offered counselling so I will definitely look into that

Changingforthisone1 so sorry to hear about your father's recent diagnosis. We've also just started this journey with my brother (57) who is was also fit and well until this point. He has flown "home" from SE Asia where he was a settled as an aid worker so leaving his former life & his partner presents another unknown at that moment.
On the plus side he has had the most amazing treatment from the NHS. His Specialist Nurse is literally at the end of the phone or email which is hugely comforting. He is just into the second cycle of treatment- a quick weekly visit for injection, blood tests & pile of ton of tablets. He's prepared himself for the worst re side effects but actually he has been mainly fine - apart from a bad reaction to my son's birthday curry last week. Definitely not to be repeated!! Managing to get his daily 10k steps in & starting physio this week to build strength where his vertebrae fractures have now healed (early symptom not initially picked up)
Apologies I'm rambling. I'm awake due to a bad head cold so reflecting a little. No visit to him tomorrow on my one day off work but we're all being as sensible as possible and keen to keep the treatment on track..
Great news that your father can still go on holiday - I do hope they have a wonderful time.

@Smashedavacado so sorry your brother is in this position too. It's so unfair isn't it. Great news he's got a good team - my dad is in the same boat, fantastic consultant and nurses.

I'll be home Saturday morning to see him and am very aware he doesn't want to be treated any differently - going to find it difficult not to burst into tears when I see him.

Me again.

Getting myself quite upset thinking about my visit at the weekend. I've so many questions and not all of them nice - ultimately I want to ask about prognosis and treatment but wondering if I shouldn't as not to upset him?

Sorry I missed this last week. I do hope your visit to your parents went well? Too late now but I would have suggested being led by the level of information your parents offered. My brother is very open & has shared all the details of his treatment plan and as much as he knows. With regards to prognosis I would say that for your DF & my DB it's still early days and so it's best for us just to support & hope for the best possible reaction to the treatment. I think with myeloma there are so many different outcomes - I'm just focusing on the people I've heard who've gone into remission for many years. I think we just need to take it all one step at a time.

Hello all,

I know it's an old thread and I'm sorry to jump on

Just need a handhold. My mum has been diagnosed with multiple Myeloma. She broke her leg and they found a tumour. They have done a bone marrow biopsy and we have Haemotolgy appt tomorrow. I'm really scared about what her treatment will be. How bad is the chemotherapy?
She's a super proud woman who is on no medication and is never ill so this is a shock.
Just don't know what to expect and how to deal with it mentally.

Tia.

@Hazzyyy so sorry to hear about your mum.

If it's any comfort, my dad is also a fit and healthy guy who never had any health problems before hand. He's responding incredibly well to his treatment, which he started a few months ago - almost all his numbers are back in the "normal" range and he's had minimal side effects.

Hope your mum (and you!) are bearing up x

Please remind him to notify his travel insurer

The trip was a few months ago and he did.

I am so happy to read this, excellent news!

@Changingforthisone1

That's really lovely to hear. I'm very happy for you and your father and gives me some hope

I'm just so scared for mum and hope she doesn't get any nasty side effects

Thanks so much for updating xxx

My dad is 84 and was diagnosed 9 years ago. It's made no real difference to his life.

Love hearing this! My dad is pretty much the same, just a little tired after his treatment.

He's been offered a stem cell replacement and I think he's going to turn it down. Not sure how I feel about that but it's not my body / choice at the end of the day.

Whilst I know someone who did have the more aggressive form (though they think he may have had it for years, he’d ignored symptoms) I know one person who is 15 years on and takes one tablet a day, he’s now 77 and he pragmatically says he’s now had his innings so isn’t interested in any more aggressive treatment when it was suggested after a recent test