[alainnbParticipant]

Hello, my Auntie told me that she has myeloma. It’s multiple myeloma and she has known she had protein in the blood for years but didn’t need treatment. Her consultant told her on 20 August, but all she said to me is ‘it isn’t good’. Don’t know how far it has progressed other than she was admitted to hospital with a broken breast bone on 4 Sept. Had one dose of radiotherapy but has refused chemo. She is not in a nursing home, is very short of breath so on oxygen most of the time. In spirit she is brilliant. But I don’t know what to do. Got so many questions….. Main one, how long will she suffer like this; I know it will get worse.

[sandie58Participant]

Hello, sorry to hear about your Aunty. My mum is 88 and had been seeing the haemo team for several years before diagnosed with MM early last year. Luckily my mum hasn’t had any breaks although she did have three lesions in femur, spine and collarbone. There is no reason to fear going on chemo. My mum was just given chemo tablets which she took on one day once a week. They didn’t bring her pp levels down on their own and they had to add in steroids (dex) which really worked for her and brought her levels right down to 7. Actually she stopped her chemo early as her kidneys were being affected, but even just the steroids on their own worked for her. She was able to stop all treatment six months later. Mum was also put on bisphosphonates to strengthen her bones. First of all intravenously, but again as it was affecting her kidneys she was put on tablets. She doesn’t have any ill affects on these.
Is there a reason why your Aunty is refusing chemo? My mum always said she wouldn’t have chemo intravenously as in her mind it would make her feel too ill. It was just a psychological with her as taking tablets somehow didn’t seem to be like being on chemo!
Do you know why she is short of breath? Did she have this before the radiotherapy?
There are so many treatments for Myeloma now so don’t give up hope and tell her about my mum who is 89 in two months time. Unfortunately there is no cure but with treatments there can be good periods without treatment. My mum has had a year off but now her pp levels have increased again. She can’t go back on chemo because of her kidneys, but the consultant has suggested Velcade and steroids as the next round of treatment. It is good that your Aunty has a strong spirit, that’s very important. There are many people on this forum that will be able to give you good advice and I wish you and your Aunty well.
Kind regards Sandie.

[alainnbParticipant]

Hello Sandie, thank you for telling me about your mum.  My Auntie is a very private person and finds it quite hard to tell me things. She is adamant she doesn’t want chemo, and I can’t feel I can press her too much as to her reasons.  She isn’t very good with taking tablets, in fact it makes her very anxious having to take the tablets she is on at the moment.  Auntie wasn’t out of breath until she broke her breast bone so can only assume it is something to do with that.  Originally the hospital said it was because she had an infection, which I assumed would clear up with the antibiotics she was on, but although it helped initially and she came off the oxygen but now, like I say, she’s on it all the time now. Finds it hard to keep talking without being out of breath. Trying to get some information from her GP but as of yet he hasn’t replied to my letter. Hopefully this is just due to pressure of work. Thank you for the details of what your mum has gone through, I’m still learning what it all means. So sorry she has this dreadful illness. Thank you for helping me.

[mhnevillParticipant]

Hi

I thought I had answered your post. Sorry, must have just been in my head.

You didn’t say how old your aunt was, but I am guessing she is a good age. If so, I can respect her not wanting treatment which may well make her feel worse for a good while before she feels better.

Maybe you could just persuade her to have monthly infusions to strengthen her bones, if it is offered to her, in view of her having already having had one distressing break?

I think ther would certainly come a time, should I live so long, when I too refused further drugs. I am 69 and currently in remission.

Best wishes to you and auntie.

Mavis x

[jillsParticipant]

Hi,
Sorry to hear about your Aunt, but just to say that my Mum is 85 and has been receiving treatment for myeloma for over seven years now and is still doing well. Like Sandie says, although the tablets are scary they can just give a low dose which is effective in reducing symptoms but doesn’t give too many side effects, in fact the steroids can actually help to reduce any pain. Mum is currently on her 8th cycle of CTD which is at a low dose so she doesn’t have side effects but is keeping her MM under control. She also has the bone strengthening infusion which doesn’t cause any problems and also allows the hospital to give her a regular check over.
All the best to you and your Auntie,

Jillx

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