Hi Andy,
Thanks for the reply, I was thinking of you when I wrote the email. 17 cycles, wow, you are really getting your money’s worth out of the NHS! Are you on the 4mg dose?
Mum doesn’t have any infections, in fact she hasn’t had any and doesn’t seem prone to them at all so that is why I am wondering about the need for Cotrimoxazole as well as the Penicillin (which she has been taking twice a day for years as a prophylactic dose). I think I will hold off giving it to her and see how she goes, she can always then have it if needed. Overusing antibiotics doesn’t seem sensible to me especially with elderly people. Sounds like she probably won’t need the anti sickness tablets either, she certainly doesn’t seem to have been prone to any nausea even with Cyclophosphamide in the past.
Thanks again,
Take care,
Jill
Hi Roo,
Graeme is right about thalidomide, the problems were for pregnant women but because it is still a controlled drug the patient has to sign a consent form stating they are not of childbearing age! My Mum who is 85 has been on it with cyclophosphamide and dex tablets for nearly a year now, this is her fourth round of treatment since 2007 diagnosis and the second time she has had CTD. Side effects from the thalidomide and cyclo are not too bad for her, it was the dex which gave her more problems and she is now on a lower dose of that as a result.
The combination certainly does work better than a single drug and Mum got to a plateau which meant no drugs for a while which was great for her. Unfortunately as you know MM always comes back but the aim with someone older is to keep it under control without having too much affect on quality of life.
All the best to you and your Dad.
Jill
Hi,
Just to echo what everyone has already said, the treatment will be managed according to what is bearable for your Dad without ruining his quality of life. My Mum was diagnosed age 77 and has had several different rounds of treatment over the last seven years (she is now 85) all of which have worked to a greater or lesser extent in keeping things under control. But also enabling her to carry on doing the things she wants to. The only thing I would say is that when she was first diagnosed she was quite depressed for a while, this lifted once she realised that the treatment was effective for her.
As Andy says keep a note of how your Dad feels on the various tablets – if he has any side effects they can be reduced and managed.
All the best,
Jillx
Hi Vicky,
Sorry to hear your news. However, thalidomide is certainly still used and does work well, my Mum has now had it twice, in 2008/9 and for this last year and it is the only thing which seems to work well for her, in combination with Dex and cyclophosphamide. Velcade was not very effective and nor was Revlimid as it made her blood count very low (both Hb and WBC). She was considered for Bendamustine (which is certainly still used as well) but at her age it was thought to be too strong for her. It sound like Colin is a bit like Mum in that he has high light chains (is he IgA?) – I wonder if some of the drugs work better on light chains.
All the best,
Jillx
Hi Laura,
Another one here – my Mum’s light chains were 10,000 on diagnosis back in 2007 (she was 77) but no bone damage – they have gone up and down with various treatments and at the highest were about 19,000 but currently around 9,000. The concern is about kidney damage but her kidneys are fine – even at 85 so it just shows this is a very individual disease. As Mum is older she could not have the more aggressive treatments like Bendamustine or a STC but she is doing OK on the various tablets, there are lots of treatment options now.
All the best to you both,
Jillx
Hi,
Is he taking allopurinol? Reason for asking is that this gave my Mum a terrible rash and she had to stop it, I think quite a few people have this problem.
Seems strange that it would go away while on the Dex if this was causing it.
Hope you get it sorted!
Jill x
Hi,
Sorry to hear about your Mum, please tell us a bit more about her. I am a carer for my Mum who has had myeloma for 7 years and is currently doing well on her latest treatment.
From what I understand there is a possibility of some genetic link but at the moment there is no way of testing for this. I suppose for me the more important question is what would I do if I found I had a genetic link as there is currently no ‘cure’ for myeloma.
The information section of this website has a lot more information on this aspect of the condition.
Take care,
Jill
Hi Susie,
Good news on the results, well done! I completely understand your worries about all the drugs you have to take. Do you have some anti sickness tablets to help with the cyclophosphamide? If so make sure you take them the day before as this makes them work best – they damp down the thing (!!) in your brain which causes nausea. My Mum takes her cyclo on a Monday morning and she has an anti sickness tablet on Sunday night, Monday morning and Monday evening. This seems to do the trick for her.
Mum also has the monthly zometa and has never had any side effects but it does work well to keep her bones strong.
All the best,
Jill x
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
Dear Eve,
Very sorry to hear your news, thinking of you and sending love,
Jill xxx
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
Julie,
I am very sorry to hear about your Mum but glad it was peaceful and her battle is over. I am sure you will remember her in healthier times.
My Mum has also had excellent care from the NHS and despite her advanced age access to all the drugs with no arguments. She is continuing to do well, thank you for your best wishes.
All the best to you and your family,
Jill x
Hi,
Just to add that Mum’s consultant says he needs us to get the test two weeks before as the PP and Light Chain testing takes longer, not sure why, maybe because it is a more specialised type of test.
Jill
Jan,
My Mum is under Frimley Park Hospital in Surrey but she has her appointments at a outpatients unit near where she lives which is part of the same PCT. The have a separate blood test unit so her consultant gives us the blood test form at each appointment so we can get it done two weeks before the next one. It means we have an extra trip down to the unit for the blood test but we can go at a quite time and it is normally very quick. We are very lucky round her as the PCT is excellent and Frimley Park is a very good hospital.
All the best,
Jill
Just to pitch in here, in my Mum’s case we have the blood test two weeks before the appointment, then the consultant has all the information ready for the day. He is happy to share the information with us and answers questions I may have. He follows up each appointment with a letter to Mum’s GP, and she gets a copy with the key results included. So the NHS can certainly do it right if they want to!
Jill
