Hi Sandie,
Glad your Mum is feeling better. My Mum has been taking Penicillin every day since she was originally diagnosed, not because she had any infections but just as a precaution according to her consultant. I think it helps prevent anything like a cold developing into an infection. It certainly seems to have worked for her, she has not…[Read more]

Hi Sandie,
Sorry to hear your Mum is feeling a bit sicky, I think it is most likely to be the cyclophosphamide as they do the same to my Mum. She takes Metoclopramide twice a day which seems to help, she only really notices it the couple of days after she takes the cyclo but I have told her to take the anti-sickness tabs every day as it keeps up…[Read more]

Great news, well done to you both! Champagne all round I think.

Jillx

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…[Read more]

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…[Read more]

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.…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Dear Gill,

So sorry to hear your news. I am glad you were able to be there at the end with Stephen. There is a lot to do now which will keep you busy but remember you need some support for you once the immediate things are dealt with.

Take care,

Jillx