hi Phil

sorry you have had a bug 2 years well done keep it up we need good news
Love Jo 🙂

Well!….no gas and air this far north! Southern softies!! Hmmm… We still have snow and now rain so hope it takes the snow away.
Vikki, I am wimpishly tired and was even more so for first 6 months after SCT. I've gone from superwoman to frail, and am just about resigned to it now. I know I've had infection after infection for the last year,…[Read more]

Hi Phil
Well done on your second anniversary, keep it up, bad luck with the bugs, I sympathise…… I'm still coughing, …… It's got to be just another bug too.
Love Helen

Hi Vanessa

Once you have had SCT you are again randomised for maintenance or not. My husband got no treatment,at first I felt he had lost out,but it does give you more time away from the hospitals.

He now goes for Zometa every 2 months boods and urint taken for trials plus we try to get appointment with consultant the same week,so that…[Read more]

Hi Alex,

Yes, I'm doing pretty well in 'new normal' thanks…. Due to go back to work from Friday (1 Feb) on a 'phased return' basis, gradually building up. Still ups and downs in both energy and mood I guess, but overall a definite upward trend, with more time between the downs and increasingly able to do more and more things which is so nice.…[Read more]

Hi Grayham,

Just to wish you good luck! I was diagnosed at the end of May/early June and am now in complete remission. I'm not having a stem cell transplant, as I'm on the PADIMAC trial which Megan mentioned, so it's 'watch and wait' and see how that pans out. Like Tom said, ignore any offputting statistics (I also heard some shocking ones…[Read more]

Hi Rob,

Well done on surviving getting the line fitted! Not the most fun thing.

I think we're a fairly rare group having the pump, seems to be a St George's thing – at least I've never seen anyone else talk about it. I don't have any particular tales to tell – I tended just to wear a cardigan with big pockets and stick it in my…[Read more]

Hi Vanessa

Sorry you have Had to join us.

I can only tell you the chemo keeps on working after the cycle is finished.

My husband finished chemo a year ago around Christmas and he had gone down to 6 he did not have his SCT until May I between all this he had another blood test taken and it was 2. I was worried at the time they were taking…[Read more]

Hi Grayham

Yes it is very scary,I think we all felt like that even careers,specially when they tell you there is no cure.we have all been there got over the shock asked the same questions ,my husband was like you,never took a pill or had a headache,well he has made up for it in the last 2years,our home has seemed like a chemist at times.

It…[Read more]

Hi Grayham

Welcome from me to. You will get great support here. My husband was diagnosed with smouldering myeloma in 2006 and only started treatment in June. Hew was on 6 months of CDT. They had to reduce the Dex as he didn't tolerate it very well. He had stem cell harvest in beginning December and they got 7 .6 million first time. He is…[Read more]

Hi Tom and Helen

I have always thought that soft tissue myeloma is very very rare ,there have been a few people on here with it usually discovered because of another reason,not looking for Myeloma.
Tom are you saying you have no Myeloma showing in bloods or urine?????
So are you looking for answers????
A Pet scan will show any Myeloma in…[Read more]

Hi Tom
So, do you have soft tissue lesions? Did you have an MRI scan or ct scan to exclude lymphomatous lesions at the beginning? The diagnosis is sometimes difficult at the edges of the condition but in those situations the decision has to be made and treatment started, usually based on clinical need for treatment. Also how the disease…[Read more]

Hi Vikki and Colin
A
Thank you for your thoughts for us. We saw registrar yesterday (we both think consultant is avoiding us). Bloods were ok PPs still at 2 but still no bed. Wouldn't have been able to admit him any way as he has a terrible cold. He keeps saying "IF I have SCT". As I said to John he has had too much time to think about it. I…[Read more]

Thank you helen for doing a better job of explaining it than me,although I understand why Tom is thinking along these lines,I just felt it would give the wrong impression to any one who read it.

I would like to say,Slim has a lot of damage,tumour plus lesions on shoulders and skull plus all spine damaged but no compression ,plus Pnuemonia…[Read more]

Dear Keith
You are certainly going through the mill at the moment, I hope things settle down a bit for you, soon
Love Helen

Dear Tom
When I was diagnosed I was told that I had 'a myeloma' . Subsequently it has been described as oligo secretary light chain myeloma IgA Lambda, roughly at stage 2-3. This means that i produced little detectable paraprotein or light chains but bone marrow biopsy was 60% disease. I needed to know all this detail at the beginning while…[Read more]

Hi Keith

You must be so disappointed ,but they are prepared to still top you up with bloods and platelets,so that must count for something,When do you see the top man again???
They are trying to give you the best chance of this working,if they are prepared to do it,you have to go with the flow.
Anyway who wants to go on holiday with all this…[Read more]

Hi |Tom
The school of thoughts with consultants is you should not,look at staging as the one and only aspect of myeloma ,as far as I know,staging tells you not only about bloods and urine,but the extent it has damaged the bones.
Everyone is aware the early cancer is caught the better the chance of curing it,but Myeloma is not curable.

Once…[Read more]

Hi Ozzy
I had husky voice too, unlike Tom- some thought it was very attractive- I thought a change of career into vice was imminent but it all settled down when I stopped taking it, phew lucky escape there.!!;-)
Love Helen

Hello Jenny
There are many of us out here with light chain myeloma, I was diagnosed nearly 2 years ago and am now in full remission, I had RCD as induction chemo before SCT 17 months ago and am currently on maintenance therapy with Revlimid. I'm not sure how I can help as you seem a bit further along the road as far as treatment is concerned.…[Read more]