[beffydeeParticipant]

Hi folks,
My sister and I are trying to wrap our heads around my father’s diagnosis of multiple myeloma.  He is 73 and was diagnosed before Christmas and has been in and out of hospital a lot since then, with multiple transfusions etc.  I think he’s only been well enough for one chemotherapy treatment so far.
We both live quite far away from him and want to ‘do the right thing’ (despite not a great history) but we don’t really know what we’re facing as yet.  Luckily his girlfriend has been a tower of strength for him, so the onus isn’t all on us – but we don’t have direct access to his medical team so feel a little out of the loop.
He had back problems all last summer and we suspect that this was his first symptom.  I have read the survival stats but they don’t tell you a lot.   If he’s 73, has had it for seven months, and isn’t strong enough for treatment,  it’s not looking particularly good…
I don’t even know what it is that finally kills you in the end with multiple myeloma.  Is it a heart attack caused by lack of decent blood flow to the heart?  Is it kidney failure?  (He seems to have had a lot of kidney issues).  This might sound like a morbid topic but I’m just wanting some clarity.  If we know what to expect, we can plan our visits to see him.  Any and all advice/experience is welcomed.  Thanks for your time.  Bx

• This topic was modified 6 years, 9 months ago by  beffydee.

[greg777Participant]

Hi Beffydee,

Thank you for posting although sorry for the reason you to post.

I think your question is a really hard one to answer because myeloma can be such a unique disease affecting individuals in very different ways.

Kidney failure can happen, infections can get people due to weakened immune system, it could be the treatment that causes the end, it is such a difficult one to know with any great certainty. For example, I presented with a massive blood clot in my leg – if I hadn’t got treatment, it would have been that that got me.

i think the best bet is to listen to the specialists, they will know the specifics of your father’s situation. Also, I would also add that people can be very poorly at diagnosis but recover very well when treatment gets going – i’ve learned that with myeloma, there is very little that is predictable. Hopefully you father will be able to build some strength soon to get the treatment started.

Wishing you all the best,

Greg

[annlynnParticipant]

In response to your post I feel what also must be said the people who post don’t tend to think about how our lives will end or our loved ones  we are a group of people all in someway affected by this awfully disease but we focus very much on how we live and that is our priority . think positive for your dad .As the.last post  said  treatment  makes a big  difference  to us all so onward and upward .going luck to him xx

[beffydeeParticipant]

Hi Gregg, Hi AnnLynn,

Thanks ever so much for responding to me – I wasn’t at all hopeful when I first posted.

I appreciate that it’s quite a odd way to come in on this topic.  I was asked the question of ‘so…how does it end, typically…?’ by a work colleague and I just had no idea how to answer.  That’s why it was foremost in my mind.

We’re a long way away, distance-wise.  And, in fairness, we haven’t been very close for the last 20 years anyway (he isn’t a very nice man), so there’s lots of difficult factors at play.  I’d like to speak to one of his consultants but we’ve never met one.  We went up before Christmas for a weekend and only saw nursing staff.  And I suspect we’re getting a rather truncated version of his illness from him and his gf.  It’s all just…confusing, more than anything.

We will go up to see him again at some point.  I just have no idea when – and a lot has to be right for that to happen (he needs to be well enough to see us, plus sorting childcare, no colds or sniffles etc).  Working with so many unknowns just isn’t helpful for planning purposes, I guess.  I want to do the right thing.  But I also don’t want to get sucked into his toxic behaviours…   Ugh.  Sorry.  I wish I could be more positive.

I guess I’m trying to get a handle of his specific disease outcome, so that I can try and assimilate all of the other issues around ‘him’.  But it doesn’t look as if that’ll be possible.  We’ll just have to muddle on through.

Thanks again for your time, both – and please let me wish you all the best for your recovery/the recovery of your loved ones.
Best, Bx

[annlynnParticipant]

Sorry love having a toxic relationship with your father must be very difficult  maybe just checking on him from time to time might have to be enough. it seems as if he brings you both down and th as not good for both of you  take care  my thoughts are with you and your sister xx

[beffydeeParticipant]

You’re very sweet, AnnLynn.  I appreciate your good thoughts more than I can express.
Best, Bx

[paulapurpleParticipant]

I didn’t get on well with my father either so I have some idea what you are going through. I would read your way around the great info on the Myeloma UK web site. The consultant may have started him on Initial treatment (read the info sheet on this). It depends what type of Myeloms he has as it’s so individual. I have light chain Myeloma so how high my light chains are is important and this can effect kidney function. For other types the amount of para protein is more important. Read the newly diagnosed booklet as it help to explain everything. He will have had a bone marrow biopsy to enable diagnosis and this will identify the percentage of cancer cells in the bone marrow. If he’s had back problems then perhaps he has some lesions.

Here are the links:

Myeloma An Introduction

Initial treatment

I hope things work out for you.

Paula

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