My mum has just completed 6 rounds of chemo for her myeloma and her para proteins had dropped from 90/100 to 15/100 but just 4 weeks after finishing chemo they are back up at 30/100. She is annoyed and upset that all the months of feeling awful have not given her any time in remission. How do I support her emotionally throught the next few months as she faces the next type of treatment. She keeps saying she doesn’t believe she’ll last until end of yeat , I’m struggling to cope myself so hard to keep positive for her when i’m not sure what’s next
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Oh @katfly a great big welcome and I did feel for you as I read your post, it is so difficult being an offspring and being so powerless…
It also came from your post what a caring, loving person you are how you are trying to get it right.
This is a very personal response from me, perhaps it is just being there for her to be able to say how it really is for her and tell her that you just do not know what to say or do.
However perhaps you are both struggling and need some external help
I do not know anything else about you both apart from your post so if my links are not appropriate bear with me.
From Blood Cancer UK
Myeloma | Blood Cancer UK
Blood cancer: mind and emotions | Blood Cancer UK
From Myeloma UK
Homepage - Myeloma UK
From Macmillan cancer support
Free specialist counselling for people with cancer | Macmillan Cancer Support
The Blood Cancer UK support line is there for both of you on 0808 2080 888
Perhaps try and take it stage by stage and realise that her and your many thoughts and emotions are all very natural and normal at this stage.
If your mum’s treatment team mention her going on a trial then please do ring the Blood Cancer UK support line as they might be able to talk through it.
Please do keep posting how you are both doing, be very kind to yourselves and do nice things together
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Hi there
It’s disappointing and upsetting when we don’t respond to chemo
Is mum high risk?
Has she been offered a stem cell transplant?
There are options still available and once the initial shock of it all has lessened mums team will be best placed to advise on next treatment
I didn’t respond to my first chemo back in 2017 after 7 weeks and my brother asked if I didn’t respond to any chemo how long did I have and the answer was 6 months
I had a salvage chemo and then a transplant as that was the only way for me to get some sort of remission which I did.
I wanted and was determined to live and willing to try anything
Thankfully treatments have come on leaps and bounds since then.
Emotionally your mum needs some counselling if she is open to it. Facing death is traumatic and it needs professional help but she needs to ask for it
Her consultant should be able to arrange it for her.
For yourself what a lovely caring person you are to come and post to us. Counselling maybe beneficial to you not sure how you would seek it as my kids wouldn’t do counselling but had some very good friends who they could turn took
The trial nurses here at Blood cancer are brilliant and respond quickly
Give them an email
Do you go to appointments with mum if not would she be willing for you to go that way you would know what’s going on
Myeloma is a remit/relapse cancer so although we have treatment myeloma does stop responding to treatment even stem cell transplants and that’s called a relapse over time
Myeloma is also very individual to the person
I’m going to link you a copy from myeloma uk for refractory myeloma patients
Keep loving your mum and just be there for her
Talk to each other
Don’t give up hope
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Thanks for all taking time to reply and for your kind words
Sadly my mum isn’t able to have stem cell transplant as when she first got diagnosed they started preparing her for it but the chemo given was too strong for her and her body didn’t cope and she ended up in and out of hospital so they said she isn’t up to having it
We’d are waiting for next consultant meeting to find out the next steps in her treatment and hope one of them works at keeping it stable.
I do feel counselling maybe needed for all of us and it’s hard to deal with it all.
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I’m not eligible as yet for a clinical trial I asked about car T cell therapy after my first relapse but I’m glad I touched base with the trial nurses
Had a great informed response very quickly and I know they are there when I need them
I highly recommend
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