Hi Sandie,
Just a couple of things – I think you misunderstood Mavis' email as the Zometa bone strengthening infusion is only once every four weeks (not four times a week). It is a better option for my Mum than more tablets and it means the hospital can check her general health regularly at the same time. The only bind is that she has to have a blood test a week before.
Also to say that my Mum did not loose any hair from the chemo but did find her hair slightly changed texture and when she had a perm it didn't hold as well. It did grow back well during treatments though!
I am glad your Mum sounds so positive and hope it continues. When my Mum was diagnosed she got very depressed and it was a struggle to constantly try to keep her going. Each time she has needed more treatment she has been very emotional about it all and as I am the practical type I find that very hard to deal with. I have a sister and brother but they keep out of anything to do with Mum really so it has been hard – I never saw myself as a carer….
All the best,
Jillx
Hi Sandie,
No problem with the questions, I will try to answer them! Mums PPs were 39 when she first started treatment five years ago having been monitored for some time. It wasn't so much the actual level but the fact that they had doubled in a three month period. She has IgA myeloma with lambda light chains and her light chains were at 10,000 – this is quite high and can lead to kidney damage so she did need treatment. She had CTD for about nine months which reduced the PPs to around 11, then went onto a small daily dose of cyclophosphamide only for about two years. She did take the antisickness tablets twice a day throughout the initial treatment as she does tend to feel a bit sicky sometimes anyway, and it worked well. She then had Velcade injections earlier this year after relapsing (PPs went up to 25) and this knocked the PPs back to 21 but as soon as that Velcade treatment stopped the PPs rose again and her latest results were PPs at 39 and light chains at 10,000 so effectively back where we started! However, she did have around 6 months with no treatment last year and she was certainly very well during this time so I am sure at their age you have to balance the effect of treatment against the effects of the disease which in Mum's case have been very minimal so far.
She is now on RCDa which is Revlimid 10mg each day, Cyclophosphamide 500mg once a week and Dexamethasone 20mg once a week. She will probably have this for four months then go on to some kind of maintenance (assuming it works!)
She also has a monthly infusion of bone strengthener, has to go to the hospital for it but I think that has less side effects than the tablets. Plus she has been on Penicillin 250mg twice a day since she was diagnosed. On the nausea I think cyclophosphamide is quite likely to cause it so I have made her take the anti sickness tablets twice a day again as I don't want her to feel sick at all and want her to keep eating properly.
On the fluid issue I think it is important to drink plenty of fluid when you have myeloma anyway, and it also helps keep things moving through the system so I am sure it would be good to encourage your Mum to drink plenty of fluids if she can.
I understand exactly what you mean about quality of life and the importance of feeling well at her age and to be honest I am sure the medicines will sometimes make your Mum feel a bit less well but as long as she can cope it is worth sticking with the treatment.
Take care,
Jillx
PS My Mum doesn't do any temperature taking each day – no one told her to do that I am sure it would just focus her on the illness too much!!
Thanks everyone, this is an issue which has often concerned my with regard to Mum's medications. When she wasfirst diagnosed she was on a range of meds including blood pressure tablets, statins etc. When she started CTD treatment these all stopped as her GP dropped out of her care. The only ones she carried on with were thyroxine and zopiclone. So maybe she was being overmedicated!
There is never any real review of medicines, when she has some new MM treatment I always ask about compatibility and this round I have told her to limit the prophylactic drugs to specific days rather than taking things everyday. The main worry is around an 83 year old being handed a carrier bag of toxic drugs and sent home to get on with it, I have no idea how that would work for someone that age without a carer or even with poor eyesight!
Jillx
Hi Sandie,
My Mum is 83 (diagnosed when she was 79) and has just started her third lot of treatment for MM which is Revlimid, Cyclophosphamide and Dexamethasone. I would just say that you should be ready for there to be a carrier bag of tablets when you collect your Mum's medications as there will be the main treatment tablets, then others which help with any potential side effects. It is worth doing some sort of chart for her to mark off when she has taken them each day – my Mum would be completely lost without the chart I do for her (example attached in case it is useful!) I have also sometimes included a little section for her to write how she feels or to remind her to drink plenty of water.
My Mum has coped ok physically with the treatments in general but emotionally has found it quite hard – she was upset again today having taken all her Monday medicines but I hope she will be better once she gets into the swing of things. The main thing is that the treatments have worked each time and she has had quite long periods of little medication and reasonably good health inbetween. I think the survival rate even for elderly people is much better than even five years ago, it is just a case of managing the treatment so it doesn't have too bad an impact on their everyday life. She will value your support I know.
Hope all goes well for you both,
Jillx
Hi John,
My Mum has the infusions regularly and has not suffered any side effects. I think some people can feel a bit 'fluey' after the first one but she didn't even have this (she is 83). Overall I am sure the infusions are very helpful in helping to keep the bones strong – and quite a few older people have them to help with osteoporosis as well as myeloma.
Hope all goes well for your wife,
Jill
Dear Sal,
Sorry to hear about your Dad but as he was not in good health at least he did not have to bear pain and the treament which can be very difficult for frail elderly. The various rounds of treatment have certainly taken their toll on my Mum who is 83 and we do sometimes reflect she has spent a lot of the last five years feeling pretty grim due to the drugs rather than the disease.
Thinking of you and wishing you all the best,
Jillx
Hi Andy,
Thanks for posting about your experience with RCD, good to hear you are doing well. My Mum is about to start the same treatment (she had CTD first, then Velcade which only gave her a few weeks reduction in PP – not very good value for money for the NHS!), but is now going on to Revlimid with Cyclophosphamide and Dex. She will start sometime over the next couple of weeks, once we have managed to get to the hospital to sign the consent at the moment we are snowed in!
My worry is that she is 83 and there don't seem to be many people on this forum of that age having this treatment. She managed OK on CTD so I am hoping this will be similar.
I hope she does as well as you seem to be and that it works to reduce her numbers. I guess we just have to get on with it and see how it goes. Not really want you want to be dealing with at her age, or any age I know…
Take care,
Jill
Hi Lesley and everyone,
Can I join in with this request as my Mum (age 83) was told yesterday that she needs more treatment (PPs 35, Light Chains 10,000!) and is going to have RCDa so it would great to hear of others' experience.
Thanks
Jill
Hi Vicki and Colin,
I have been following your posts and just wanted to say well done to you both, great news that Colin is back home. My Mum is far too old at 83 for SCT for her myeloma but it is really interesting to read about the process and hear about good outcomes.
Hope it has stopped raining for you and that you are able to go for a walk together soon, my hubby and I walk together a couple of miles every day and it does make you feel better even in the cold weather.
Take care,
Jill x
Hi Lizzy,
Welcome! Jusst to add that my Mum had a similar reaction, very bad rash and ended up in hospital – it was the allopurinol – it is a known side effect. She has not taken it again and since then has been fine.
I hope you find a solution for your Mum, there are a few other treatments which also work well, my Mum has just finished four cycles of Velcade which worked for her.
All the best, let us know what happens,
Jill x
Debbie,
On the exercise issue – your Dad may not feel like playing tennis sometimes while he is having treatment but I really believe that regular exercise is vital so I hope he will be able to carry on when he feels up to it. I tried to encourage my Mum to walk (OK, I am a bit of a bully!) and think this would have helped but she felt she couldn't, lost confidence and now just prefers to sit and watch TV. A real shame as she has had a very good response to treatment but through the lack of exercise has lost a lot of her muscle tone. It really is true what they say about use it or lose it when you get older!
All the best,
Jill
Hi Debbie,
I would like to chip in here as I had a similar situation with my Mum who was diagnosed with myeloma when she was 78 and started treatment when she was nearly 79. She was a good, safe driver but decided she should give up once she started treatment and told me she now needed to be 'cared for'! In my view it was a bad decision for her to give up driving at that stage both for her and (selfishly I guess) for me as she immediately lost her independence and had to be much more reliant on others. I think she believed the end was nigh and so gave her car away to my brother thereby giving up any potential for changing her mind. In fact she is now 83 and has done very well on the treatment and is actually physically very well at the moment.
Now she is pretty much housebound unless someone collects her (she won't use taxis or public transport and the half mile walk to town is too far for her) so she relies on me for transport, shopping, etc which is a challenge to manage alongside my full time work and my own son with special needs!
So if your Dad wants to continue to drive, and feels up to it then I would urge you to encourage him. Keeping independent is really important psychologically as well.
All the best,
Jill
Hi Jean,
My Mum has had swollen legs a couple of times during the treatments she has had for MM – the latest was during the Velcade treatments – they swelled up during the first cycle. She has had every type of scan going – blood flow, CT scan etc, but nothing adverse was detected so the recommended treatment was just to put her legs up – as high as possible. She also got some compression stockings from the doctor which do help. Since she finished the treatment in August her legs have gradually got better so I think it is to do with the steroids which she had alongside the velcade. Luckily she doesn't seem to have any neuropathy.
I wouldn't have been keen for her to have water tablets as it is difficult enough to get her to drink enough water!
Thanks for the post I must say I was relieved to read that others had this problem as the docs seemed to find it a bit of a mystery!
Glad Frank is feeling a bit better – keep using the cream as it does help to keep the skin moisturised.
Love, Jillx
Hi Michael,
Sorry to hear about your wife. My understanding is that Velcade is licenced in the UK for use with relapsed myeloma rather than as a first line treatment – although I am no expert and others I am sure know much more. It is a very expensive treatment (around £7k per cycle apparently) so I suspect part of the reason is also financial as I am sure oral CTD is much cheaper.
My Mum (age 83) had oral CTD first and although it reduced her levels of myeloma to a plateau they never got to zero and full remission (which I am told is fairly unusual). She has just finished four cycles of Velcade injections and again this has reduced the myeloma to a plateau level – but the numbers are still not zero. The aim seems to be to keep things under control so that she is free of symptoms. She coped fine with the Velcade with little in the way of side effects, the worst part was the weekly trips to the hospital for the treatment.
All the best,
Jill
Hi Louise,
Welcome to the forum. The fact that your Dad is fit and well is a good thing but others are right that the treatment will knock the stuffing out of him for a while. My Mum, 83, was diagnosed with MM when she was 79 after routine blood tests and has had two rounds of treatment, CTD for about 9 months followed by a 2 year break, then four rounds of Velcade which finished in August. She is currently treatment free (apart from monthly bone strengthener) and just being monitored every three months, and actually much healthier than she was a couple of years ago and feeling more positive as she now knows that the treatments are effective.
So 70 seems quite young to me…!!
All the best,
Jill
