Better pack the snow shoes Ted, and the thermals it's nippy up here.
Love Helen

Hi Tom,

I'm a fellow Londoner and also had PAD treatment, 4 cycles from June to September, and then a stem cell harvest in October. i'm not doing an SCT, due to the study I'm on and the fact I've had a Complete Remission.

You must be gutted to be having to go through it, but PAD seems to be a very effective sledgehammer, and it's definitely…[Read more]

hello Tom
i am sorry you have had to join us but you will find much help and advice here I havnt had any of these treatments or a sct I had CDT with 3yr and 6month remission have just started on velcade i chose not to have an SCT as my kidneys were very damaged and i didnt want to finish them off completely with the heavy chemo needed
Stay well jo:-)

Well
Dia
here we go again I think Scott is doing ok on this regime and Keith has just started they said this might be an option for me next if velcade doesnt work not thinking about that yet:-P what you really need is a break from meds lets hope this comes soon there have been really good reports about it its not a new drug its been used for…[Read more]

well Tom
🙂
HAPPY BIRTHDAY TO YOUR CELLS AND MANY MORE TO COME WHAT SAY SAY YOU
lOVE TO ELAINE AND YOU:-) lOVE jO X

Hi Ted, happy to help, better get to grips with your high fluid intake now, I'm still finding it a bit tedious to drink as much as they advise.
Love Helen

Many happy returns to all the stem cells! Tom , that's a heck of a lot of cards;-)
Love Helen

Hi Ali
What a good photo, your mum and dad look really happy together.:-)
Love Helen

Here here I agree with Jo Jo
Love jean xx

Keith good luck on Thursday I will cross everything that you get the chance to go on the trial. Keep us informed.

Take care
Love Jean x

Hi Ted
The abnormal paraprotein in myeloma is usually found as a whole molecule – like a Y shape, for example igA igG igM. But some people only have small whole pp levels but produce large numbers of small sections of the pp, these are called light chains or Bence Jones proteins and are usually found in the urine. With the new free lite tests you…[Read more]

Ali what a lovely photo. You all have had a hard time so enjoy and have a great Christmas
Love Jean xx

Hello,

This is second hand but I wanted to pass on the positive experience of a nice guy who I've met many times in clinic. He was initially diagnosed aged 34, which is now 17 years ago. He had a first remission of 7 years, and then a second remission of 10 years! The doctors told him it would be shorter the second time (which, as people have…[Read more]

I did enjoy it Dia I think you should get these poems in a book i think they are lovely
Love Jo xx;-) 🙂 😀

Hi Teds

I make heavy light chains which is an indicater of MM being on the move I have started velcade as my light chains had shot up it was the light chains that helped damage my kidney so its omportant they keep a good eye on it you may be ok but it might be a good thing the doctor wants to see you early
Keep well
Love Jo x

Hi Keith
I am glad you are feeling well at the moment the bloods do seem strange my hb fluctuates between 9.5 and just recently 7.5 i think this much to do with my dodgy kidneys but has been worse since starting velcade Do they think you might get back to normal any time soon i hope this is not it! had my week off from velcade last week and felt…[Read more]

Hi Sarah and Henry

what a tale I really wonder what will happen to some of us in the NHS systems so much laxness and uncaring attitudes make me shudder poor Henry I wonder if he is doing a bit too much working all thosr hours perhaps thats why he has been so open to infection getting a bit run down I hope he feels much better soon
Love Jo x

Dear Dai
It is good to hear you are feeling a bit better and back to getting out again, despite the weather. Whilst not flooded, we have just switched our ground floor electrics back on again having had a blackout last Tuesday, some wire under the floor was no doubt sitting in a puddle. I hope the bloods are no worse on Monday and you get to…[Read more]

Hi Sarah
I've had infection after infection since my SCT , I've been on 3 lots of A/Bs since august and the idea of giving me immunoglobulin was raised about 6 weeks ago. But a decision not to give me immunoglobulin was made based on the fact that the whooping cough testing showed i was producing lots of good antibodies against the infection, my…[Read more]