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]

Dear Sue
sorry Michael isnt responding at the moment but you never know it suddenly could so fingers crossed for him we are all thinking about him and hoping for good news soon
Love Jo x

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

Hi Bridget
scary at first I know but ever since I have been put on steriods first off DEX then prednisolone for the kidneys my sugars have been too high so have had to inject insulin daily a real pain as it bruises me all the time the bruising is caused by the steriods apparantly its another side effect of them but hey ho we still here and…[Read more]

Great news Ted

It will be nice for you to get a few months break from appointments as for the docter looking 14 mine looks like father christmas without the beard a rolly poly he has a cuddly manner as well with me we must stike the right chemistry with each other keep in touch

Love Jo xx:-)

Hi Mal and Bruce
Sounds Hilarious I wish someone videod it, would make good viewing

Keep well
Love Jo x

Oh Dear Tom
you are such a cheery person I would like you to be next to me if things go wrong I am sure we would end up laughing keep us cheered up Tom
big ((hugs))
Love Jo x

HI Eve

thanks for asking about me I have not been too well last couple of weeks we both picked up food poioning I was so so ill it was affecting my kidneys it all happened just before info day so we couldnt go shame I was really looking forward to it my support group leader is hoping to get me a CD of the day if she does when I have finished…[Read more]

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 Shirls

sorry you are under the weather at the moments I hope you pick up soon
Love and (((hugs))) Jo;-)

Hi Mal and Bruce

so glad you got home at last lets hope things settle down soon then its back to cider and guitars:-) 🙂 🙂
Love Jo x

Hello Dai

I am reaslly glad you are representing us you are so good with words and seem to say just the right things good luck 🙂
Love Jo

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]