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]

Hi Aileen,
Sorry to hear of your diagnosis but really pleased that you have found this site. I hope that it helps you along this journey that you find yourself on…and that we can help you too.
Ask any question…none is stupid…we've all been there no matter how much it seems like we use all the jargon…sadly we've learnt it over time.
Take…[Read more]

Hi Sandra,
I was told to be very careful and spent the first few weeks adhering to that advice. But with 2 young kiddies, I can't avoid being out and about, so I have to say, I haven't been so careful since. I go shopping at the normal times etc. I sort of forget that I am ill still and that my levels are low!!! I should probably be more careful…[Read more]

What great news Dai.

I am so so chuffed for you and hope that the velcade keeps doing its job!!!

Debs x

Helen
Here's to a long remission. I am just over a month post SCT and if it gives you hope, the last two weeks have seen a big improvement in my energy levels. I still need an extra couple of hours sleep a day, and have odd days where I feel terrible and sleep all day, but all in all, those are getting fewer and fewer and there is a light at the…[Read more]

Hi Sandra

Good luck with it all…I'm a month post transplant now!

I was told I could have a duvet etc….some people I know were told they had to take a brand new one in if they wanted to, and I was told I'd need to change the cover every day or so….I ended up not bothering even though we had the new duvet at home…i was so hot in the…[Read more]

Hi Keith,

Glad to hear that you're out of hospital and on the mend! It's a good feeling isn't it?!

I was also quite ill…from day 1 sadly….and lost over a stone in weight. Luckily, unlike you, I could afford to lose it as it was all weight I'd put on while I was on the Dex. So for me it was the one positive that I got out of the whole…[Read more]

Oh Tina
They've postponed it till next tuesday- I cried when I got the letter! I feel like my toes are broken tonight…worse than they've been in ages. It's partly my fault as I've overdone it today and not had a sleep but it's depressing to know it could have been looked at tomorrow and now I ve got another week to wait.
Enough moaning!! Down…[Read more]