Hi all,
Sorry, I don't post much but I do read regularly and find all your posts and information really helpful as I am carer for my Mum age 83 who has MM. She has now had three Velcade subcutaneous injections (once a week) and so far it seems to be going OK, not much in the way of side effects apart from those from the Dexamethasone which she has to take on two days each week. She also has all the other drugs – anti fungal, anti viral and omeprazole as part of the treatment cycle. The worst part is the trek to the hospital each week which was worrying for her at first. Apparently she is the oldest patient there having this treatment!
Just thought it might be worth giving an update for anyone who is interested in the subcutaneous Velcade treatment.
All the very best to you all,
Jill
Thanks for all the suggestions here, very difficult to encourage my Mum (age 83 with MM) to drink enough as she lives alone, I just remind her whenever I speak to her. Elderly people are not good at drinking enough anyway and I certainly notice it even in her voice on the phone if she is getting dehydrated.
David – I understand that tea and coffee all count – lots of people think they don't but they are still mostly water so better than nothing. However, alcohol is not so good unfortunately as it definitely causes dehydration – sorry all!
Jill
Min,
So sorry to hear your sad news. My thoughts are with you.
Take care,
Jill
Gina,
I was wondering how your Mum is getting along – haven't seen any mail from you for a few days? Hope all is well,
Take care,
Jill
Hi Gina,
A friend of mine had this procedure many years ago after suffering a collapsed lung. It is a process which sticks the lung to the chest cavity (I am sure there is a more technical explanation) with the idea of keeping it from collapsing.
Just to say that it seemed to be quite a complicated procedure at the time (done at Brompton Chest Hospital) but my friend had no further problems and is still going strong thirty years later!
Love to you and Mum,
Jill
Sarah,
Just to join everyone else in sending sympathy and love,
Jill xx
Hi Gina,
Not sure what you have discovered on the blood pressure tablets but just to say that my Mum had been on blood pressure tablets for years when she was first diagnosed with MM. She stopped them when she first started CTD and hasn't taken them since (four years now) and everytime I ask them to check her blood pressure it is completely normal. So I wonder whether she really needed them at all!
Having said all that I do think there are problems with liaison between the specialists and the GPs – Mum was on a range of tablets before MM, she stopped them when having CTD and no one has ever reviewed that original list and said she should restart them but she doesn't seem to miss them healthwise…
Like Eve I thought people with MM should avoid anti inflammatories so probably worth double checking that – there are lots of other painkillers.
Let us know how she is getting on,
Jillxx
Hi Jane,
Your Mum sounds very like mine who started CTD treatment three years ago when she was 79. She found the first few months quite tough and the thalidomide dose was lowered as it was initially too high and made her very drowsy and confused. I know what you mean about the history as my Mum actually took thalidomide for a while when she was pregnant back in the 1950's! But it does the trick in reducing the paraproteins even on the reduced dose. She took it at night but has never been a very good sleeper, in fact she has taken sleeping tablets for years although she stopped these while on CTD. I agree that it is a difficult regime for an elderly person on their own and I had to help with making a medicine chart and reminding her to drink plenty etc, she ended up having 9 months of treatment. She has been in plateau since it finished and now at 82 is really reasonably healthy with good kidney function and PP under control. It does knock the stuffing out of them though, she is much less active than she was and feels less able to do things but I have managed to get her to go to a day centre a couple of times a week and various other activities, we also have a local hospice who have her on their books and send a visitor to see her each week. Not sure where you are but this might be another way to help your Mum although it sounds like she is doing OK – I agree it is very impressive that they keep on following doctors orders when I am sure I would have given up like a wimp long ago!
Keep in touch, it is good to hear about how things progress and ask away if you have any questions.
All the best to you both,
Jill
Hi Roz,
Of course we all remember you and Michael. I hope you are getting some care for yourself as it sounds like you need some?
Take care and keep in touch we are here for support.
Jill
Hi Fi,
Welcome. You will find there are a lot of helpful and knowledgeable people on this site. I am a carer for my Mum who was diagnosed with myeloma at age 79 (she is now 82). Luckily I go to the appointments my Mum has with the consultant so I ask the questions and get the information direct from him. Could you go along with your Dad? I know that if I wasn't there she would not ask or understand but would just nod – that generational thing you mention. In Mum's case the protein levels are one factor but other blood indicators are also important to put it all in context. I think older patients also need support in making decisions about treatment and understanding how to manage the side effects.
You could also give the Myeloma helpline number on this site a call – they are very helpful and supportive.
Good luck anyway, Jill
Hi,
Just to say that my Mum (age 82) was diagnosed in 2007 and her PP was 21 – treatment started when it went up to 40. It then very gradually reduced to 11 and is currently around 12 at each visit – she has never achieved 0 (complete remission) which apparently is very unusual. A reduction from 86 to 3 sounds very impressive! Everyone else who has comment is right – the consultant looks at the whole picture, and if other bloods are OK then there seems to be no rush to treat aggressively, particularly among older patients. Mum is currently described as 'at plateau' and just takes a daily low dose of cyclophosphamide, which seems to be keeping things at bay but no significant side effects.
Jill.
Hi Debs,
One of the side effects of cyclophosphamide is nasal congestion and a runny nose. Not well known but I discovered this by trawling various websites when my Mum was on CDT. Of course it does also affect the immune system which makes colds and infections more likely too.
All the best, Jill
Thanks for your advice. Both her GP and consultant have spoken to me and explained that anti virals would not be effective now and would probably give her other unpleasant side effects which they want to avoid. They are also not keen on strong painkillers as these can cause confusion etc and so concerned about her as she lives alone. In fact she does seem a little better today, the blisters are healing over now and the pain doesn't seem to be too bad, she mainly just gets very itchy in the evening. The cream I got for her (Eurax) does seem to help but the main part of the rash is on one of her bottom cheeks which doesn't help when she is sitting down. I am not too concerned about bedsores as she has not taken to her bed but prefers to be up and about. She is really quite tough for her age – I am very impressed with her!
She has never had shingles before and I hope can avoid getting it again. Her consultant has stopped the cyclophosphamide but kept her on daily Penicillin to protect against any infection.
Thanks again,
Jill
Hi Jenny,
Glad to hear that your Dad is feeling a little better and that you are clearer on his treatment. I completely understand your worries about care but agree that he will be much better off staying at home. Not sure where you are located but if there is a hospice service near you this could also be very helpful as they can provide support at home and also day and respite care. The local district nurse or the Macmillian nurses can refer you to this type of facility if there is one. I used to think a hospice was just for people who were near to dying but since Mum was diagnosed I have discovered that our local hospice is a fantastic place, full of support, information and comfort for both of us.
All the best, Jill
Hi Jenny,
Very sorry to hear about your Dad. However, it is not quite true that there is no treatment after 70. My Mum was 79 when diagnosed and although she had not been as poorly as your Dad seems to have been beforehand she went through nine months of chemotherapy treatment (by tablet). This was very successful in getting the Myeloma into remission. It does sound like the problem may be with your Dad's kidney function as if this is not good I think it would be very difficult to cope with the toxic chemo drugs. As David suggests I think you would find it very helpful to talk to the Myeloma UK nurse (via this website) as they will be able to explain more about the treatment options.
Good luck, Jill
