Hi guys
Just a note to say I was prescribed pregablin or lyrica but my GP wouldn't prescribe it as our local PCT has blacklisted it!! We are in the process of appealing it but as you can imagine it is a long process. I'm doing fairly well on gapapentin and nortriptylin and even trying to get rid of the oromorph which I've become dependent on. But…[Read more]

Hi Wendy
I had my last dose of velcade in June and whilst I'd already got the PN at the time (the reason why I stopped) I have to say that it got much worse afterwards…..it seems a long time after for it to develop but I don't know whether or not that is possible. I know how horrid it is to have it…it feels v dehabilitating but if it makes…[Read more]

Hi Keith,
No mine was an auto too, but Gareth Morgan was the one who said he thought it was GVHD….apparently you can get it a bit with auto's too?

Debs x

Hi everyone

I just wanted to say thank you to those of you who supported this event. I met a couple of you at the sale which was really lovely! The day was heaving which was amazing.

Anyway, I wanted to let you know that we have made at least £1700 from the event – it made all the hard work well worth it…..now I am under strict…[Read more]

Hi David and Welcome

Great to have you on here…I always think it is really good when we have the 'good news' stories on the site….I did ask for a discussion category for this but it hasn't happened sadly.

Glad to hear that you are doing well post SCT and I hope that your remission is long lasting

Take care
Debs x

Sorry Sarah,
Got that totally wrong!
It is http://debsjourneywithmyeloma.wordpress.com/

Hope that works for you!
Debs x

Hi Sarah,
Yes you are normally able to get a blue badge….answer the questions thinking about his WORST days…..it has been a godsend for me, especially when I was on velcade and post SCT when every few steps makes a difference. It also saves you quite a lot on parking as it is free in a lot of places – makes up for all the petrol spent on…[Read more]

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]