Hi Sally
As usual all the lovely people on this site have given you some excellent advice but I just wanted to say a quick hello. All I can say is that I thought I appreciated my husband before I started treatment last year but having got through the transplant and a slow recovery I have felt so sad for anyone who has no one to support them…[Read more]

Hi Meera
I don´t have any knowledge of plasmacytoma I´m afraid but I did see a mention of it under one of the other topics. I´m sure you will get plenty of response from people with experience of this as soon as they see your post. I´m sorry your struggling with the tiredness – I am very tired and stuggle to even do the housework let alone loo…[Read more]

Hi Julie
Glad to hear you are stable.
I am curious to know if you feel spending a lot of time in a sunny climate helps with some of the effects of MM? We lived in Spain until three years ago when we had to return to England as we had an elderly mother who was beginning to need care. However, we are now in a position whereby we could spend…[Read more]

Hi
So sorry things have not gone as smoothly as they should have done.
RegaIrding the Myeloma 11 trial I have been on it for the past year. I can only tell you that in the main I have been very well looked after and the only time when I have not felt quite so confident was when I went for my sct and was not under the direct care of my own…[Read more]

Hi
Just a quitck note to say welcome to you and your family and sorry your Dad is having such a rough time of it.
You and your Mum are doing a smashing job and I am sure your Dad must feel so grateful to have the support of such a lovely family even if he can´t always show it when he has to take some of the medications – they do make people…[Read more]

Hello
So sorry you have all had such a sad and difficult time – and indeed still are. Even though you sound to be coping bravely you must be worried sick yourself whilst trying to be reassuring and positive for your dad. I´m glad you came here to talk as there are lovely people here who understand how much of a help it is to get things off your…[Read more]

Helen,
PS. So glad to hear your going into sct at 0 – fantastic starting point for you I feel quite excited that you must surely have a super long running remission.
Fingers and toes crossed.
Carol xxx

Thanks Helen – at least I´m forwarned then not te expect too much at first.
Take care
Carol xx

Hi Helen

In that case we are doing things in a slightly different order as I have had my sct (which by the way has left me now with 0 yes zero paraprotien level!) and am now just finishing my 3rd cycle of Revlimid.

They seem to be so well practiced in this procedure now that I am sure everything will go smoothly and know are in good hands so…[Read more]

Hi Helen
Thanks for the update about stiff joints and sickness etc. Sounds like you at a similar point of treatment to me – I have just finished my third month of Revlimid.
Glad to hear that things might be settling down over the next few months and I might be able to get a bit more active.
Have a good weekend
Love Carol xx

Hi Gina
Glad to hear things are a little more positive. You sound such a lovely caring daughter – your mum must feel so lucky to have you but please do look after yourself too won´t you? My carer is my husband who spent the first 9 months up to transplant worrying himself sick and hardly every having a break from thinking how he could make…[Read more]

Hi and welcome!
So pleased you are having a good long run. I managed for just over five years and to be honest if it had not been for my job becoming incredibly pressurised and our elderly mum becoming very difficult and demanding I suspect I would have continued well for quite some time. I should have put my foot down and looked after myself a…[Read more]

Hello Gaye

Although I don´t know you may I say a personal "Thank You" for sharing your decision. I think many of us will understand very well your thinking process – for me I know that there will come a time when it will seem more natural to go rather than stay.

I wish you peace and loving support throughout the coming days and I am sure…[Read more]

Hi
So sorry your mum is so poorly and you are all under such a strain. I was in a similar position to your mum last year and have to admit I felt not only low but a real burden on my long suffering husband. As soon as the antibiotics etc. kicked and I started to feel a bit more positive I saw the relief on his face and realised that this is…[Read more]

Hi Helen
Glad to hear your feeling a bit better slowly and congratulations on the 5 mile walk – you must feel as if your getting somewhere now.
Do you know what causes the stiffness in joints etc. – mine is so bad I walk like a penquin if I have been sat down for longer than 10 mins! Even my finger joints are stiff and painful.
I think Tom…[Read more]

Hi -whinge away! sorry your having such a poor time of it. I am nearly at the end of month three of this latest round and am on 25g and feeling pretty fed up. Regarding the sweating no I don´t have that but do have rashes and sheer exhaustion – I am now only managing 4 hours before I have to lie down again for a few hours rest and trust me I`m…[Read more]

Hi Laura

Sorry you have joined us – I`m sure you must be so worried about your Dad. I didn`t have thalidomid but other chemos give similar side effects and they gave me some smashing tablets that really helped with the sickness – please do ask for them. As mentioned already I too found that taking the chemo at night helped a lot.

Take care…[Read more]

Hi
Sorry for the delay but only just read your post. If it helps my level has gone both up and down in the past (by quite a lot) and I often thought it was when I was very tired or under more pressure at work.
Hope your getting some answers – it´s difficult to ask when they always seem so laid back but remember they know all about it and we…[Read more]

Hi Jet

Thank you for taking the time to reply at such a time. So pleased the ice cube trick seems to be working for you so far. Sorry to hear you had such a poor time of it with Revlimid – to be honest I´m not enjoying it much either but do have the occasional good day when I wonder what I am whingeing about and feel very optimistic!…[Read more]

Hi Lorraine
Thanks for the help – glad to hear that things will get easier. Hope you are feeling well now. (Our good news hasn´t sunk in quite yet – just hope it lasts)

Best wishes

Love Carol xxxx