Hi Dai,
I don't seem to be having any side effects from the revlimid so far – maybe because it is without the dex and cyclo? It is supposedly proven to prolong life and extend remission though, so as long as it doesn't deteriorate my quality of life, I'm happy to go with it and see what happens?!
Hmmm, Pen-y-Ghent…maybe not (did the Yorkshire…[Read more]

Hi Tina,
Glad to hear you had a lovely time, even if it was hard at times. But good on you for taking up a new sport…next time try not to break a toe hey?!
See you soon
Debs x

Hi Keith
Great news (though sorry to hear about the itching!). I'm doing well thanks, unfortunately I have to go back every month due to being on the Revlimid maintenance arm of my trial. But I think I am lucky to be offered it so I shouldn't complain!
Feel like this week has been a breakthrough as I haven't had a sleep all week (apart from the…[Read more]

HI Sarah,

Sorry to hear about Henry….rubbish news and I'm not surprised that it is hard for you at the moment. Life does get easier once you have had time for the news to sink in, and you learn coping mechanisms.

I had my SCT in July..I am 36. I have to say that I think one month post transplant is optimistic, but it really does vary…[Read more]

Hi there.

Helen, still in the Myeloma XI trial and doing well. The hair is growing…seems to be sprouting all over the place now! May even need a hair cut soon…lol!

Keith, as David says, it may be different consultant to consultant, but mine said that I didn't class as complete remission because my pp wasn't zero. Apparently you need to…[Read more]

I know the Marsden is finally giving it subcutaneously but also that if you are on a trial it ISN'T available. Hopefully one day even that will change as there's no way I'd have velcade again unless it wAs subcut. The pn has been too uncomfortable.

Gina
So sorry to hear that. Must be so hard for you and your family.
I hope you have some time ahead to unite as a family
Debs x

Hi Kay,
Well it is actually my 100 day today…I think!! Happy Bday to me!
I too get achy bones….feels like I've just done loads of exercise and is mainly in my calves. I think it is the PN personally as it gets better with the morphine….well not better, just more bearable.
I am now on gabopentin and nortryptalin. It helps the PN loads and…[Read more]

Hi Dai,
Sorry that you are ill…you are right about the weekend thing…I felt awful on Thursday and Friday, and probably should have been sensible and not gone to the London Infoday today. Especially since my son was sick this morning!! Typical!
…..I did go though and had a headache throughout the whole day which I've finally knocked on the…[Read more]

Hi Gilly,
You don't say how long you have worked for them or what your contract says? BUT you are covered by the disability discrimination act and they should be prepared to make 'reasonable adjustments'.
I would suggest you or your union rep should go to Acas and ask for some guidance as you might have a strong case. Your local CAB might be…[Read more]

Gill, you made me laugh! 🙂

Don't be put to shame….we all deal with stuff differently and for me it is the best way of forgetting what is going on….I find it hard to do that if I am not running round like a headless chicken!!! And I also find it a challenge to raise BIG money – I hope the ball next year will do that – would like to raise…[Read more]

Hi Scott
Have a good party on Saturday!!
Will try to pass on best, but you know what these consultants can be like….very elusive!!
Take care
Debs x

THanks Gill – not sure if it's good or bad that I'd be recognised anywhere!!
Someone the other day said they wouldn't want to bump into me on the street – maybe I wasn't smiling then!!
Doing ok thanks….waiting for 3 month post-SCT results on Tuesday so a bit nervous in case of relapse, but keeping busy organising my tabletop sale, and have…[Read more]

Hi Elaine,
Welcome to the site and I hope it is as helpful for you as I find it. I think it is full of lovely, caring people!
I hope you cope with your treatment. It seems that each treatment is different for everyone so it is hard to say about side effects, but just make sure you mention everything to your consultant/ nurse specialist. They…[Read more]

Hi Helen

Tabletop sale is on the 6th November but we've made £150 already on a gym membership that was donated….am hoping to get over £500 in total. Then on to organising the ball I want to do next year!!

Tracey, that is very kind of you but VERY misguided. I could only wish to look like Kate. Sadly neither my face, nor my body looks l…[Read more]

Thanks for thinking of me Keith…..funnily someone else I know forwarded on this article to me.
I'm not sure I'm bad enough at the moment (fingers crossed) and I'm not sure how they'd do it for me anyway, as my pain is in the whole of my lower legs and my feet. However, they had said that patches/ creams were around if the drugs didn't…[Read more]

Hi Jo,
Great….will look out for you too!!
Debs x

Hmm, can't seem to change my picture even though it says I have done! Oh well…look out for the bald head instead…..

Hi guys.
Just a quick update. My specialist nurse sent off hormone tests for me last week. 1 came back suggesting that I was definitely going through the menopause and 1 came back suggesting either I was, or I am mid-cycle. Great. No real answer! And I won't know about the mid-cycle thing as I'm on the coil so don't get periods anyway.
Anyway,…[Read more]