[mumhasmyelomaParticipant]

My mother was diagnosed with Myeloma last month. Her mother died 45 years ago of Myeloma within just one year of diagnosis, so my mum – not having read up on current treatments – thinks that she too won’t live for much longer. Since losing my dad 3 years ago, she feels lonely and claims to look forward to the prospect of being ‘reunited’ with him, as she has a strong faith. She has told relatives that she is considering NOT taking any treatment for this disease – in her words, why prolong the inevitable?

The scan showed no signs of bone damage and her doctor said her levels were not terrible – but at just the right point for treatment to begin – she has recommended an initial cycle of cortisone treatment over a 3 month period (8 pills for 4 days a month) and then seeing how the PP levels respond.

Obviously, having done some research and browsed this forum, I think her idea of refusing treatment is sheer madness for 3 reasons:

1. Myeloma treatments has improved vastly since her mother died
2. My mum’s stage of Myeloma is perfectly treatable – no bone damage – and the suggested treatment has very few side-effects according to the doctor – mainly potential trouble sleeping during the time she is taking the pills
3. Myeloma is a chronic disease with no cure – BUT it can be managed and people live with Myeloma for many, many years.

So please share any stories, advice, experiences or thoughts that I can use to help convince her to at least give the treatment a go. Any help will be much appreciated.

Many thanks

Nick

(A frustrated and anxious son)

• This topic was modified 10 years, 3 months ago by  mumhasmyeloma.

[wallaceParticipant]

Hello Nick,

I will be 50 next year and was diagnosed early due to kidney failure cause by the Myeloma, like your Mother I have little bone damage due to the early diagnosis and I am now entering year 8 of remission since my SCT. You are spot on with the treatments having vastly improved, 45 years ago it is doubtful I would have lived this long past diagnosis.

 

Mike

[graham-cParticipant]

You don’t mention whether or not she has any symptoms or conditions that reduce her current quality of life but my concern, if I were in her situation, is that long term, refusing treatment may reduce life expectancy but the greater risk is the  pain and suffering from the conditions she would be at risk of having to endure could last many years without treatment.

 

[mumhasmyelomaParticipant]

Thanks everyone for your comments so far. Graham, my mum’s symptoms are anaemia, fatigue and regular infections that antibiotics never seem to resolve – but otherwise, at 77 years old, she’s in good health.

[graham-cParticipant]

I doesn’t make sense to refuse treatment for Myeloma considering the potential risks. Anyone wishing to hasten their end is making a mistake to choose Myeloma as the way to go to put it bluntly. She is quite fortunate to have it diagnosed before suffering an acute episode. I fully respect the right of anyone to make their own decisions but it’s unlikely she would be able to endure the potential effects of Myeloma without receiving medical intervention at some stage, but the way Myeloma affects people, you can’t wind the clock back, that’s why an early diagnosis is so important.

I’m still at the MGUS stage and have concerns about the possible side-effects of treatment, if I should find I require it in the future, but the potential symptoms of Myeloma mean that I wouldn’t ever turn it down.

[MicheleParticipant]

Hi Nick

I imagine that you could talk to your mum about the up to date treatments for Myeloma ’til the cows come home, but the big hurdle you face here isn’t her physical state, it’s her mental/emotional state of mind.

My dad died 5 years ago and sadly, it’s been as if my mum went too. She’s never got over it as they were married for 56 years and were a devoted couple.
My mum has colitis but despite my telling her of all the modern drugs that could help her, it’s as if she’s deaf and spends her days wishing she could join dad.

At the end of the day, all you can do is let her make her own choices.

It seems so ironic to me that mum wants to die and I (the one with MM) wants to go on living life to the full.

My best wishes to you. I really do know what you’re up against.

[jillsParticipant]

Hello Nick,
Welcome to the forum. My Mum is similar to yours in that she was diagnosed at the age of 78 (following the death of my stepfather) and commenced treatment with a number of tablets including steroids. That was 7 years ago and she is still going along OK at the moment, on another round of treatment but is still responding to the drugs and so avoiding the horrible symptoms which Myeloma can have if left unchecked. She was quite depressed for a couple of years initially as she thought she was going to die quickly, and this made the treatment hard but she has responded well and is really not much worse off than when she was diagnosed. Like your Mum she has very little in the way of bone damage which means she is not affected much by the actual myeloma at all. Sorry to be blunt but there is no doubt that she would have been dead by now without treatment – probably within 6 months to a year of diagnosis. Instead she has been able to keep going, doing things she enjoys and spending time with her children and grandchildren.
Your Mum has to make her own choice but it is worth giving the treatment a go in my view, particularly as it can help with the symptoms you describe.
Best wishes to you and your Mum, let us know what happens,

Jill

[kpParticipant]

Hi Nick, all good advice from previous posts. This is a fabulous place to get the advice and support you need.

I can’t offer any additional advice except maybe to reinforce the fact that Myeloma is treatable ( if not curable) and she has the same chance as the rest of us of achieving remission and a good quality of life for many years.

I wish you success in supporting your Mum to take the treatment route, her outlook is good because she has no bone damage. My Consultant told me I was lucky to be diagnosed before any end organ damage so perhaps after your Mum starts to recover from the initial shock of the diagnosis she may be able to see things in a different light.

I have been referred to a Councillor because I have struggled to come to terms with my diagnosis, only one session as yet but she has really helped me to start to understand my anger and fearfulness. Maybe this is available in your area?

The other person who may assist your Mum ( and you) is the Nurse Specialist.

Kind regards Karen

 

[mickackParticipant]

Hi

I was diagnosed october 2013 last year…a fit active 47 yr old I started treatment 3 days after the initial diagnosis, 6 month of combination treatment then in may I had high dose chemo and stem cell transplant….after the <span style=”font-size: 13px; line-height: 19px;”>initial shock of being told I had cancer which took at least 3 month to sink in my life was a blur…your mam will need to talk to proffesdionals so she has all the information so she can make her own choices…its not easy but it seems to be the only way to prolong life…I look at it like ive been cheated out of 20 years as this cancer usually affects older people, we all have our reasons to live and mine is my 16 yr old son …I want to live as long as I can for him…life is precious but the choice is always the individuals..Ime sure your dad would want your mam to live as long as she can but I understand your mams wishes also…the cancer will progress thats fact and your mam will become ill and in pain without having the treatment.</span>

Awe I wish your mam and your family who by the way go through the emotional pain of cancer with the loved one all yhe best for whatever the future choices are.

My saying is justjeepfighting till you cant fight no more

 

Mick

[andygParticipant]

Hi Nick.
Sorry that your mums joined the Myeloma crew.
Quality of life is the big factor in the treatment or no treatment debate.
Your mums age will mean if the docs do treat her they won’t give her the “full” treatment however the side effects are still quite severe. Steroids are no walk in the park they lift you up and then you crash. Though I guess they won’t be giving her a big dose.
Normally they don’t start to treat MM until there is other problems besides a high level of PPs. So if that’s the case you have a bit of time to convince your mum to give it a try and if she doesn’t like it she can always come off it or try a reduced dose.
Though ultimately it’s your mums decision and you’ll have to support her the best you can no matter what she decides. Best of luck.

Every day is a gift.

Andy

[WillisboyParticipant]

Nick,

I too wish you all the best with persuading your Mother to start the treatment.
I was diagnosed with Myeloma at the age of 50 in March 2013. It did cause some bone damage and was described as aggressive as it was spreading. One Doctor told me that if I had been 65 then I probably would not have made it.

But treatment for Myeloma is improving all of the time. I am now in remission and am back at work, albeit with lighter duties and fewer hours. I am feeling good at the moment.

So yes, I would recommend that your Mother should accept the treatment and enjoy more years with you and the family.
Better the treatment than the illness.

All the best!
God bless

Graham B.

[mumhasmyelomaParticipant]

Thank you all for sharing your comments and advice – very much appreciated. The good news is that mum is starting her first cycle of treatment tomorrow – steroid pills for 4 days – which will be followed up by more tests, so fingers crossed she will respond well. Will keep you posted!

[sandie58Participant]

Hi Nick
My mum is 88 nearly 89 now. She has been seen by the Haemo team for several years as it was picked up early that she had abnormal PP levels. Then at the beginning of last year they decided that the MM was now active and time to start some treatment. Because of her age she was just put on Cyclophosphomide (chemo tabs). These didn’t reduce her PP levels so they added in steroids (DEX). This worked like a miracle and reduced her PP levels from around 27 down to 7 and she stopped all treatment at the end of last summer. She was also having bone infusions as they had found some bone damage. She had a lesion in her femur, spine and collar bone, although these didn’t seem to cause her any problems. She did feel a bit poorly at times during treatment, but nothing too bad. The bone infusions did give her pain in her chest and they ended up swapping the infusions for tablets which she seems to be fine on. My mum has lots of other health issues as well, including breast cancer, but she coped very well with her treatment last year and she is 88, nearly 89 now. On her last visit they had found that her PP levels had gone up again and she will need to start some other treatment soon. It is a bit of a problem for my mum now as she also has stage 4 chronic kidney damage and heart failure but she is not ready to give up.
Your mum is younger than my mum and she doesn’t have bone damage which is good. Do tell her that not all treatments are bad and that they can be very successful and allow her good periods of remission without treatment.
I know how worrying it must be for you but I wish you both well. I guess as my mum was being seen for some years before the diagnosis it didn’t come as a shock and we have just been matter of fact about it. I do all the research and ask relevant questions, and mum just goes along with taking the pills!!!!

Kind regards.
Sandie

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