This topic contains 5 replies, has 5 voices, and was last updated by 
tony642 2 years, 4 months ago.
We have been through the most shocking and terrifying five months watching our 79 year old Mum go from a fit, competitive golfer, carer for my disabled father and talented artist to being unable to walk, or do anything for herself.
She has suffered several edge fractures to vertebra which are also due to osteoporosis, a broken hip and an enormous distended belly (like a watermelon).
It’s very hard to see her in this condition, and I’m worried about her mental state too.
They won’t offer her stem cell, and she was going onto a drug trial until her hip broke and they decided it was better to start her on regular treatment as they could begin quickly without the need for more bone marrow biopsy.
My Dad is rather fatalistic and has encouraged her to cancel her golf subscription. As things stand it did seem incredible that golf might be a possibility, particularly as her mobility is so impaired and she is in so much pain. Just getting in and out of bed is quite horrendous for her.
I’d always hoped that I might be able to take her on some holidays if my Dad were to pass first, but now things are quite difficult. I want to believe that she will regain her mobility enough to at least walk normally and be able
to cook, garden, paint and make her amazing cards.
Is it normal for it to take a year for treatment to work, and does this recovery happen in people of her age too?
Hi Sparkles,
Sorry to hear that you are all having such an awful time at the moment. I’m one of the forum volunteers and my dad was diagnosed with MM back in 2013. Much like you, we watched as our dad who had always been striding out in front of us on walks and was active became shrunken, lethargic and in pain. It was very difficult to see and honestly, we weren’t sure whether or not he would get through it as he looked so ill and my only previous experience of myeloma at that point was my friend’s dad who had died after being diagnosed at a very late stage.
However, dad started his treatment and though it wasn’t plain sailing (with a further hospital admission for pneumonia and many months of him spending much time in bed and in pain) he got to a stage where he had his SCT and it probably took a year to 18 months for him to fully recover his energy levels etc.
He is now 72 and is 18 months into his first relapse. For info he has a mass on his hip and a compressed fracture in one of his lumbar vertebrae which give him pain and issues walking/sitting for long periods etc.
Unfortunately, he did not react well to the first lot of treatment (dvd) with awful side effects and he was so poorly that again we thought the worst. The treatment didn’t work for him and he switched earlier this year (after a brief period without treatment) on to a new combination which he is much better in himself on (though still gets wiped out very easily) and the blood results seem to be going in the right direction. He also is very bloated and was the first time around especially in the face and tummy as a result of the meds, but it does go away. I’m actually pleased to see him this way rather than the skeletal figure he resembled much of the second half of last year!
I know this doesn’t exactly mirror your experiences and dad is a bit younger than your mum, but I guess my main message is to not lose hope. There are so many different treatments available now and, though it takes a while to recover especially in regard to the energy levels/fatigue, we have seen dad come back once very well and be in the process of coming back from it again now after struggling for a year. I would definitely speak to your mum’s medical team and ask as many questions about her treatment plan and recovery as you need to in order to get the answers you need and don’t be afraid to push back if you are worried (this was definitely the case when dad stopped responding to treatment and I do believe it sped up his transfer to a new treatment).
Take care and good luck with the treatment xx
Hi Sparkles, diagnosis and early treatment can be horrendously life changing initially, but some of us do get significantly better, physically and psychologically, over time. Even if this is relatively straightforward, it can take a year, or did for me. One of my myeloma friends was confined to a wheelchair for 6 months after diagnosis, but 18 years on, is fully mobile and living totally independently. It isn’t possible to accurately predict which patients will do well- I’ve had a GP tell me I could be dead in 3 months, and a haematologist tell me (4 years ago) that I’d live 3-4 years. (My myeloma is currently inactive & I’ve been fine for the past 3 years).
It wouldn’t be surprising if your mother is feeling pessimistic at the moment given that her life has changed so radically over such a short period- & the level of pain she is in- but it is possible that she will be, & feel, much better once her myeloma is under control.
You mention the change in role that has been forced on your mother.
My mother too was long term carer for my father when she developed a serious, incurable illness (not MM). My parents had had a very long and happy relationship, enjoying “carer” & “cared for” roles respectively. But my father (who had had strokes & vascular dementia) had no understanding of my mother’s problems nor was capable of empathy for her, & their needs became increasingly incompatible during the course of her disease, which was very distressing for them & for the family to witness and deal with. In effect our family dealt with this by me advocating for our mother, & my sister for our father.
If your mother is responding to treatment, and recovering from the major surgery on her hip, she may just get back to playing golf- her previous level of fitness will definitely stand her in good stead. In the meantime she might benefit from counselling from a Maggie’s Centre or Cancer Support Centre.
Hi Sparkles,
I am also one of the forum volunteers. I feel for your Dad as I went through something similar. It is very hard to offer words of comfort when it must feel like the world is against you, but please do not lose hope and determination to carry on, hopefully things will get better. There are new treatments coming out all the time, and it might be a case of finding the right one for him.
Keep your chin up and stay strong for both of you, and keep us informed as to what happens.
Regards, Tony
Hi Sparkles
Everybody’s myeloma story seems to be different but there are a few similarities between mine and your mother’s so you may find this helpful.
I’m now 76 and male. Until February of last year I was fit and active. Like your Mum, I also played golf (but badly). In February I developed back ache which I put down to muscle strain, however, within a few weeks the pain moved to my right thigh and became paralysing. By early May I was pretty sure that I’d be in a wheelchair for the rest of my life.
An MRI scan revealed that a growth on my L4 vertebra was compressing the nerves in my spinal column and it was that which was causing the pain in my thigh. I had an operation to remove the growth and as soon as I came round from the anaesthetic I knew that the pain had gone. The growth was sent for analysis and it was subsequent to this and a bone marrow extract that I was diagnosed with myeloma.
The pain had paralysed my right leg but gradually my mobility improved. Then, after a few weeks, the pain returned – not quite as bad as before but enough to put me back in a wheelchair for hospital visits. I had another MRI scan but the conclusion was that the growth hadn’t returned and I didn’t need another op. In July 2021 I started chemotherapy. Over the next few months the pain eased and I was able to start walking again.
I stopped chemo in March of this year and since then my general wellbeing has improved a lot (I suffered quite a lot from side effects). I am now able to do jobs around the house and garden. I use a stick when I go for a walk.
I have constant pins and needles and numbness in my lower legs and feet, and jobs that require me to lean forward soon give me backache but the debilitating pain that I used to get in my thigh has gone completely. I get tired quickly but, after about 12 months of inactivity, that’s not surprising. I am trying to build up my strength and stamina but, given that my L4 vertebra is described as ‘collapsed’, I’m not sure about playing golf. I am able to walk for over a mile without needing to rest and, I think it’s true to say that it’s arthritis in my hips that causes me most discomfort.
I’ve never had a satisfactory explanation as to what caused the pain to return (although I have been told that it was the chemotherapy that stopped it).
My paraprotein levels have always been low and I don’t suffer from high levels of calcium, kidney problems or anaemia that affect many myeloma patients.
I was a mere stripling of 75 when myeloma reared its head. I had a rough few months but now I’m enjoyinng life again.
I hope this helps.
NormanT
Hi Norman,
That’s great to hear. I think living with something like MM changes oyur perspective and life. I have certainly learned to not put something off until tomorrow if you can do it today. Take every opportunity and make the best of what you have got.
Keep smiling.
Regards, Tony
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