Hi mjb

Sorry no one has replied to you post. This should bring it to the top of the List again.

Glad that you are getting the pain under control. As I understand it, the law allows those to drive, if on controlled drugs, provided the drugs are properly prescribed and you are fit to drive.

I must admit, I find my car my lifeline.

Good luch…[Read more]

Hi Helen and Andy

I realise I am answering the wrong thread, but hopefully you’ll receive it!

I’m sorry you are both finding Pomalidomide so difficult. I can see where you are though, in a catch 22. It is important isn’t it to get as much quality of life as possible. It’s a shame that your body doesn’t eventually tolerate the drugs with less…[Read more]

Hello Andy,

I’m not on dex and I’m awake all hours with stuff going round in my head so decided to get up at 5.30 this morning and leave Kevin sound asleep due to the 200mg thalidomide and the very low HB 7.5 so today it’s blood transfusion. Kev had his 5 days in hospital having dtpace then home for 5 days till immune system went to zero, back…[Read more]

Thank you all.
I feel better off the thalidomide ( tremor better ,symptom which is only of interest to a gastroenterologist seems to be changing direction, .inertia gone )
but steroids now keep me awake and very hungry, hence the time of this email and more. I hope the stem collection goes well KP .
In retrospect I am now on the same…[Read more]

Well things turned out differently.My next two results showed a plateau response due to thalidomide stopping working. So after four cycles I was given the option of coming off the trial and going on VCD for certain ,which was my wish .
So day 1 today Velcade/cycl/dex
So off thalidomide and heparin but still on steroids which cause most problems…[Read more]

Hi Peter, Ian, Dawn, Polly and all

Peter, well done! So glad that the SCT has gone smoothly for you. Just take care of yourself now and hopefully you won’t get any complications. Remember to listen to your body and rest when you need to.

Sorry I haven’t been on here for a while. I have been to hospital twice recently. The first time I was…[Read more]

What wonderful news congratulations to you both 💐 xx

What wonderful news congratulations to you both 💐 xx

Well Vicky & Colin! A big congratulations to you both, and what a lovely memorable day to celebrate and many many more too! I’m glad a good day was had by all!

Mine and kevs heartfelt congratulations once again!

Love Liz & kev xx

Hello Andy

Nice to hear from you, kevs been home from hospital since Sunday first cycle of dtpace done, went for bloods & checkup yesterday and his neutrophils had gone from 1.9 on Sunday to 0.6 so they think he will be going back in poss: Friday if not before, he woke up this morning feeling dreadfull so might be ringing them earlier than…[Read more]

Hi tony just a quick hello and to say what a huge amount to raise! Well done to your son in law, hope everything went ok for you at hospital.

Keep well Liz & kev xx

Thank you Maureen, kevs had his pic line fitted today and all ready to start chemo tonight
He seems relaxed but not happy missing this lovely sunshine.

Take care Liz & kev xx

Hello vicki, not been on the forum for ages and the past few weeks I’ve been following how everyone’s doing, now find myself reading your news about Colin, I do hope you can get him home soon and that infections stay well away and give you both quality time together.

Mine & kevs thoughts are with you both! Love Liz &kev xx

I will put an update…[Read more]

Dear Tm.
I understand your dilemma and there are lots of grey zones in our understanding of smouldering myeloma .But you a have had all the tests available which could detect myeloma bone disease assuming the neck problems are cervical spondylosis related ( which btw i have also) . The pet scan is very sensitive hence the colonic polyp detection…[Read more]

Hi Dawn,
You seem to be heading for a complete response but sorry about the chest infection.
I will find out on thursday my results from three weeks ago which was near the end of second cyle but only a week after last result of 19 so hoping for lower double figutre or less.Like you if thats the case, I will to try to gat a provisional date for Sct…[Read more]

Hi Andrea

It’s all about steps and as time goes on you will regain your strength and pull away from feeling weak and tired as for the grey hair I decided to keep it because I wanted to take some control of my wellbeing and decided against adding chemicals to the mix even though you can have it done without touching your scalp nevertheless I…[Read more]

Hi Peter, Ian, Dawn and all,

I am now 4 months post SCT doing well and feeling alot stronger. Only problem I have is ongoing carpel tunnel syndrome which is annoying, also quite achey in general but I am trying to improve my fitness level which helps. My paraprotein last time was 11.7 and before that was 10.7 so it seems to be stable. I have put…[Read more]