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]

Evening Stanley, yes I also was given Mozobil, ( check out the price per shot, you will certainly be getting your money’s worth from the NHS! ) as my stem cell harvest was over two days I had two injections.
Best of luck with the transplant on August 11th, hope that it all goes well, during and after.
Keep us posted on your progress.
Regards
Tony F

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

It is good to hear from you Don, glad all went well and hope you feeling stronger every day.
Best wishes Karen

Must have missed that part of Jeffs post ref online access to hospital records, I attend the same clinic so next visit will ask the obvious question, will let everyone know.
Regards
Tony F

Hi Karen, haven’t seen you in clinic, really pleased that it is all going in the right direction for you. It’s a good feeling when you restart doing all of those things that others take for granted. Still get tired occasionally and have to pace myself doing things. Because I am on the myeloma XI drug trial I go up to the Hope Clinic, bit less…[Read more]

Hi Angela, yes I was given a pre printed form by the transplant team when they released me back to the haematology specialists. I had my SCT at the beginning of February 2013, so a year before your husband. The first series of ‘baby jabs’ was 6 months after SCT. I had, pedicel, pneumovax and meningococcal. The second lot was at 8 months and the…[Read more]

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]

Hi Sarah, I had my SCT when I was 68, now 18 months later I feel great. Do tend to get a bit tired and need to nap, but that could be age and the desire to keep doing things. I walk my dog across fields and woods for a couple of hours every day. Bits of gardening and DIY. As John and Rebbecca have said each individual is different but the SCT is…[Read more]

Hi Susie

Glad to hear all went OK, although I am sure you will be waiting to hear back from the Consultant.
It  is such a waiting game this MM isn’t it.

Sorry you are still in pain with sciatica.  Hope all is well when he rings you back.

I have a small heat cushion which I warm in the microwave and put in the small of my back when sciatica k…[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]

Sarah, so sorry to hear your story, I feel sad for your loss and pray that you will remain strong and live with happy memories.

Eve, my prayers are for you and Slim, stay strong.

My love and thoughts are with you all.

Tony F

HMJ, deepest sympathies to you and to your family for the loss of your beloved dad. From your post it sounds as though he was a true fighter. To survive for 19 years should I hope give encouragement to other readers on this site.
How wonderful for you to express your feelings about your dad.
Wishing you the best.
Regards
Tony F