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]

It's lovely to hear you going off on a tangent! I know Piddington as quite a lot of my friends live there. It's all a lovely area and I feel so glad we moved here 8 years ago from London 🙂 We had our 7 year old at High Wycombe like you….Our 5 year old, Sam, was born at home – an A40 baby!!!
Love
Debs x

Hi Dai,
I was on zometa but have never (touch wood) experienced bone damage to date. I'm off it at the moment as I'm still only 2 months post transplant, but I expect to be put back onto it in the next couple of weeks.
Sorry if that blows your theory out of the water!!
I am with Gareth Morgan so he may be biased….I think he was responsible…[Read more]

Well done Dai….I am so pleased for you.
And as daunting as it is, go out there and live life to the full. Hopefully with your positivity, you'll get a year or more of remission and I wish you all the best with that. Drug free time is a blessing once you have started isn't it….
Take care
Debs x

Hi Etta's husband (do you have a name? :-))
I hope she's got over the flu symptoms and that they were only from the zometa….hopefully she'll only suffer the first time too.
With regard to staging, I've never been told. To be honest, I've never asked as I've just focused on my pp levels. I think it is pretty normal so I wouldn't worry – it is…[Read more]

Just thought I'd give you a quick update after my appt with the pain clinic. It is quite a frustrating story!!
I went in, and after listening to him talk over me constantly, he decided to put me onto pregablin as I had been on it by mistake pre-transplant (along with tramadol and morphine – not meant to be given together!)and it had worked then.…[Read more]

Hi Keith,
I would check with your hospital, but when I had a rash around my neck and collarbone post SCT, my consultant said it was GvHD and that it was a good sign that the transplant had done its job.
Mine has just about stopped now….I am 2.5 months post transplant.
Hope it calms down soon so the swearing can stop 🙂
Take care
Debsx

Hi Wendy,
I hope you're doing ok post transplant….it's hard in those early weeks so bear with it and don't rush to getting back to normal. It's really important you listen to your body!!
As to the mini Allo, you could post on the Under 50 site as Ian has recently had one of those….in June I think it was. He is doing well so far.
That must…[Read more]

Hi Terry,

Just to say that velcade definitely isn't a last resort. I was diagnosed in 2009 and started treatment in 2010. I started on revlimid but that stopped working quite quickly and I was put onto velcade.
It worked really well for me and brought my pp down from 28 to 4 at which point I had an SCT. The only thing I would say is please…[Read more]

Hi Etta,
Welcome to the site….sorry you've had to join us.
I reacted to zometa the first time I had it – felt very flu like with bone ache all over, hot and cold etc. But it only lasted about 24 hours and since then, I've never had it.
But the tiredness etc is probably due to the CTD….my best bit of advice is to listen to your body. If it…[Read more]

Hi Helen,
I've been a bit different to you…I have told the world what I'm going through – stemming from when I did the Yorkshire 3 Peaks to raise £15k for MMUK. I sort of had to tell my story for that.
So, no, I don't wear anything on my head at all! Very refreshing and people assure me I have a nice shaped head (?!).
My SCT was on the 18th…[Read more]

Hi Helen,
I never bothered with a wig I have to say. My mum bought me one (over £200!!!) as I was worried how the kids would react, but they were brilliant and I just found the idea of it too hot, and not me. When they didn't react to the hair (other than saying it felt like a hamster :-/ )I never bothered wearing it, and now find myself…[Read more]