Many thanks David

Regards

karen
xx

Thanks Tony,

I will say hi if I see her, never seem to get the same consultant twice in a row nowadays. Although I heard from Dr Garg recently, (emails) regarding holidays. She gave thumbs up as I am in remission! ;-).

Regards
Karen H
x

Hi David. THat is not good news. Although Maureen is right that revlimid has been said to have a tiny chance of increasing the risk of secondary cancer, skin cancer being one of the ones that it is more likely to do this with. That said, I have always said that whilst there is a chance of that, I’ll take that chance given the benefits it offers.…[Read more]

Dear Sarah.
Sorry to read your sad news. Such an eloquent and beautiful post.

I can only add my sympathies to you and your family and wish you the very best for the future.

Thinking of you especially for next Tuesday.

Andy xx

Hiya.
When I was first diagnosed I was in and out of hospital frequently and didn’t think I would have very long. Talking about my diagnosis with anyone who’d listen helped me get everything into perspective and helped he come to terms with my myeloma.
We were married 3 days after the word myeloma came into our lives. Like I said previously the…[Read more]

Hi David.
Yes PIP is the replacement for DLA. All new applicants go onto PIP straight away and DLA claimants will be migrated over in due course. It’s all a money saving exercise that’s costing hundreds of millions to implement and the only way they seem to save money is to cut the benefit payments and delay the payments as long as possible.
Oh…[Read more]

Hi all.
Well I’ve been celebrating my PP result for the past week 😉 sunk a few beers in that time. Gideon Osborne will be pleased with the tax take off mine and Steph’s drinks.
I’m obviously hoping that the Pomalidomide keeps working for a long time yet but you never know with myeloma. I’ll see what my consultant says Thursday. Got to remember…[Read more]

Hi Maureen.
I agree it’s shocking the length of time it’s taken. When I applied for my DLA I had the form filled in by an expert at a charity. He even got it back dated for me to diagnosis! I only had to wait a few weeks. When I had to renew, for some reason I didn’t get a indefinite award, my consultant filled a good proportion of it in and I…[Read more]

Hiya David.
It’s going to ge a busy few weeks for you I hope everything goes smoothly.
Your still on anti thrombosis injections! I get to take a little pink pill now instead. I think after jabbing myself approx 800 times my consultant thought I’d been through enough.
Your bloods should improve because Revlimid is known to depress them. It got my…[Read more]

Hi again Tony, I am on the trial too, and go up to the Hope clinic, I agree it is much better, and seem to get seen to much quicker! One day we may bump into each other again. I know what you mean about getting tired. Keep well.

Karen x

ps, sorry I typed in the tag box, hope I have no mucked up your thread! K x

Hi Tony, I am 19 months post SCT, I had my last baby injections at begining of July, and I am on 3 monthly clinic visits, mine is 14th August. So we are pretty much the same stage. I still have morphine for back, and 6 weekly Zometta. But I drove for the first time since diagnosis the other day! There are more positives than negatives post SCT…[Read more]

Hiya
SCT is not a necessity in the treatment of myeloma. Though it is commonly used to good effect. There is a big discussion going on now as to the merits of just having drug therapy.
As your husband has been successfully treated with CDT he could stay in remission for a long time before he needs treating again. For a SCT to go ahead you need to…[Read more]

Hi Eve and Helen.

Helen I hope the strong painkillers didn’t spoil your trip to Cornwall. I know they work killing the pain but I find they space me out and zombiefie, if that’s not a word it should be, me. Back pain? Not feeling up to much? I think that is a complaint a lot of us have unfortunately.
I’m starting my 8th cycle of Pomalidomide and…[Read more]

Hi Maureen.
When I stared out Revlimid I was just on Rev and Dex. Cyclophosphamide was added to the mix a little later. Initially my PPs didn’t move much but, I think I’m quoting Dai here, Rev is known to be a slow starter. Anyway I ended up having 22 cycles of it.
Dex actually fights myeloma in its own way and sometimes is used on its own.…[Read more]

Hi Fiona.
I was put forward for an Allo over 2 years ago because I didn’t respond to any treatments. At the time it was regarded as a matter of urgency. A match was found and detailed blood analysis was done. Unfortunately the match wasn’t exact and I was told though the mortality rate was 20% in this case I’d probably not make it out of hospital!…[Read more]