Hello everyone,
I am here in this forum on behalf of my elderly mother. I hope you don't mind.
She was first diagnosed with Myeloma in 2006. It didn't need treatment at the time but now it does. She has been on very strong chemo drugs for about 9 years straight now and is getting so depressed with it. Last week the doctor told her that she will never come off the drugs and it has really upset her.
Firstly, is it really the case that she can never come off the chemo meds or have the doctors just given up? should she get a second opinion and maybe go private? I don't believe there is nothing they can so to get her into remission.
Secondly, if she does have to stay on the chemo drugs forever which are Lenalidomide, dexamethasone and aciclovir, is there anything she can take to combat the side effects which are, fatigue, horrible tasting food, swelling of the legs, shakes.
She called me in tears the other day, she's really had enough.
Any advice would be greatly appreciated.
Hi dph1975 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about the challenges your mum is having.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of living with an incurable blood cancer.
The drugs that your mum is having are targeted therapies, steroids and antivirals that are designed to control her condition and reduce the risk of bad infection.
I was on some of these drugs for a good number of years for my type of blood cancer but thankfully had no real problems and yes I have talked with many people who are have been on these drugs for as long as si have known them.
It’s safe to say that if these drugs are being used to control your mum’s condition but if her condition progressed she may need to go onto a more demanding treatment pathway.
If your mum…. or indeed yourself have not done this she/you need to highlight all these problems to her clinical team….. has she a named Specialist Cancer Nurse?…… as they understand your mum’s case best and can give professional advice.
Fatuge unfortunately is part of the treatment journey, she rests when the body say rest but at the same time she dies Ned to keep some regular activity going as this actually over comes some of the fatigue.
Horrible tasting food is always a challenge so eating strong flavoured foods can help but the main thing that worked for me was blitzing fresh pineapple and putting it into ice cube tray’s and freezing them. I then sucked on the cubes regularly and thus helped over come the taste of the drugs and I turn helped the taste buds.
Swelling of the legs needs to be checked out as she may be retaining fluids so call this in.
Shakes for me was the sign of an infection…… check her temperature regularly m. I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.
There are a few active members in the group at the moment so let’s look for them to pick up on your post.
Do click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Always around to help more or just to chat.
