Hi Maureen,

I had my SCT when my IgG was still at 36 I believe. I had 6 courses of Velcade that only managed to drop the PP from 52 down to 36. Because I am in Germany the rule that seems to exist in the NHS that you can’t have an SCT unless your PP is below 10, doesn’t happen here. After a chat with my consultant, she believed that the Velcade…[Read more]

Suggest you talk to the Myeloma Nurses. I’ve spoken to them on several occasions and found them to be so helpful and understanding. Give them a call.

Well folks, I am in the middle of the second cycle of VTD as the MM went active just before Christmas. Coping with the treatment fairly well although it has been an anxious couple of months. I have a new full time job waiting in NHS clinics!!!

I don’t visit the site often at the moment but do hope everyone is doing OK.

Best wishes

Karen

Hi Maureen ,
Good luck with Wednesday, you’ve just got to hang on in there. easier said than done I know.

Richard

Good evening, what a way to spend Valentines! I know it’s easy to say, but please don’t panic, mm will not overtake you, why not wait and see what the consultant has to say before you reach any decisions. Is your husband still mobile and can he fend for himself, ie cook, go to the loo, shopping, go out for walks etc etc. if yes then let things…[Read more]

Hi Andrea. I had my SCT 3 years ago and am trying to think back for things that may help you. I found my laptop a lifesaver and had free access to the hospital internet being as I was in isolation. Also had free TV. I took my knitting in but soon found that concentration levels are too low to do anything like that. I had a book, but suggest you…[Read more]

Hi Ian,

Sorry to hear that,glad to see your still staying positive though 🙂

I am back at barts in may,they want to keep an eye on me ,as they put it.

Guess until then its onwards and upwards

Take care

Mandy

Hi Vikki

Great to hear from you. Sorry to hear Velcade didn’t work for Colin. Not on here very often so when I got your post I looked back to see how Colin was doing. He’s had had a rough time and he’s thinking OF GOING BACK TO WORK!!!!! I hope the new treatment works. Blo*dy disease.

Frank has his up and down days. We both took chest…[Read more]

Hey,Shabbyneil, noticed that you live in Ashby De La Zouch. We are in the process of reforming a Myeloma Support Group in Leicester and are looking to recruit members. Would be good if you could join in.
For more info I can be contacted on: tony.farquharson@btinternet.com
No pressure but look forward to hearing from you.
Regards
Tony F

Hi Ian,

Saw your recent post in which you mentioned little old me,bless you for your concern.

I have just had my 100 day appointment at barts and at the moment have been told am in full remission.

They journey through sct was ok,ended up being in for 3 weeks and only side affects were bad stomach and bad mouth but that was it,your suggestions…[Read more]

Hi.

Be aware when your dad has his first treatment it still could knock him back a bit even at a low dose. It takes the body time to get use to the drugs. Keep a diary from day one detailing what he took and how it made him feel. It’ll help the medics and will help your dad as he’ll know what to expect through his treatment cycles.

Keep his…[Read more]

Hi Vicki and Colin.

I hope Colin is coping better with the Bendamustine now and is getting the results we all hope for.

I don’t know how my PPs are at the moment. I’m a bit more laid back about my blood tests nowadays. So I only find out what they are when I see my consultant. Every three months! Well every twelfth week really 😉 I’m happy to…[Read more]

Hi John.

There are a few of us around who haven’t had a SCT for one reason or another. Drugs can get you into remission and you can get a decent drug free period that way too.

I haven’t had a SCT but that’s due to my myeloma being difficult to treat. Don’t give up on a SCT just yet once they hopefully sort your cough out you’ll get your…[Read more]

Hi Susie.

At the moment there’s nothing definite about maintenance therapy they are still running trials to see if there’s an advantage and the optimum doses. I guess it comes down to the old chestnut about quality of life. If you go along with the maintenance route and you find it impacting upon your well being you can always stop it.

I have no…[Read more]

Hi Ron.

If I have ANY problems I go straight to the haematology day unit or ring them for advice. I wouldn’t go to my GP or A&E. I’ve done this for over three years now and it’s what I was told to do by my consultant. We can’t afford to hang around waiting for treatment it can be fatal.

Every day is a gift.

Andy.

Hi Vicki.

You’re right. Allo is donor cells and auto own cells.

How’s Colin getting on with the Bendamustine?

Get some trips planned.

Every day is a gift.

Andy xx

Ps Ron – Ellen and or Maggie are brilliant (on the helpline). Helped me on many occasions.
Best wishes
Jean

Hi Ron

My husband had shingles last year (1 year after SCT) it was bery painful and he still gets some pain. Consultant prescribes aciclivoir anti virol and pregabalin for pain. He has been on them for over 1 year and consultant in No hurry to take him off them. Frank is 72 and he got a letter from GP to get the shingles. He checked with…[Read more]

perhaps someone put the decimal point in the wrong place

Hi Andy

Just caught up with your post. I’m so happy for you it’s wonderful news. Know you have had hard times – so keep up the good work