Hi Wendy and Ozzy

Sorry to hear you have both relasped there is not much one can say you must both be devastated,I can tell you Velcade is a good drug and seems to be having a good effect on the Myeloma,Slim got on better with the Velcade than CDT,he had 6 cycles straight after CDT,because they found the myeloma had gone up to 80% in bone…[Read more]

Hi Ozzy

Yes franks voice was very hoarse when he was on CDT and always worse while on Dex. Hope it eases up soon
Best wishes
Jean x

Hi John

Boy that was great about the SCT and back at work ???? well done you. Frank smouldered for 6 years and then started CDT in June. He doesn't come on the forum and there as his attitude is that his consultant will tell him anything he needs to know. He's not like me I need to know everything that I can about this awful illness. We are…[Read more]

Hi John and welcome to the club that I'm sure you don't want to be in. You are in the right place for advice and support from a great bunch of knowledgeable people. What part of the country are you in? Have you had SCT or waiting? My hubby is waiting for a date for SCT.

Best wishes to you
Love Jean

Dear Jaqui

I am so very sorry to read of Glenn's passing. Nothing that I can say will ease your pain. My deepest sympathy to you and The family. I hope the love and support of family and friends helps you through this terrible time

Love Jean x

Dear Keith
Good start, let's hope you get a good run with it. Love Helen

Dear Wendy
This is a terrible blow for you, but don't cancel your holiday just yet, were you to be going with friends? I feel sure that your docs would let you go, unless you don't feel up to it of course.
Let us know how you get on on Friday,
Much love Helen

Hi Sharon
It is normal for all sorts of arthritic pain to disappear when you are on steroids, but I think you should mention the pain at the next appointment – if there is bone dammage, it is something they need to keep an eye on. And adequate pain control could be started.
Love Helen

Hi Susan

Sorry to hear you have Myeloma,but welcome to the club,it is very mind blowing when they tell you!!!,i cried when our own doctor told us,my thoughts were how do you control a cancer that goes all round the body in a blood supply.I had a lot to learn,and i have to say it takes awhile to take it all in.

My husband is on the Myeloma X1…[Read more]

Hi Alex,

Nice to 'see' you and hear that you're out the other side of the cycles. Best of luck for the stem cell harvest and SCT! Sorry you have to go through that extra stage – but whatever it takes to beat the myeloma into submission is worth it!

Helen

Hi David

Sorry that you may be relapsing and I can't give any adviceoin other treatments. Frank is 70 in Aptil and waiting for date for SCT. Consultant told hm that they would not give him another because of his age. The harvested 7,6 million cells.
On news few weeks at Macmillan were confronting the government saying they were denying…[Read more]

Hi Lesley
On 3.2.11 I was told I had myeloma. It was the biggest surprise and shock ever. I was the fittest and most energetic of people, though a bit anaemic for no reason, blood transfusion service told me to go and get it checked out. I was reeling from the shock. I can't quite believe that I let them give me all this noxious stuff for such a…[Read more]

Hi Peter and Tom
Clearly this is now a competition! I was in for 3 days for the Melphalan and stem cells, then home for 2 days and back in for 10 a total of 13 days in hospital!
Hope you don't feel too bad Peter, just hang on in there.
Love Helen

Dear Lesley
I started the myeloma xi trial almost 2 years ago. Since then I have completed induction chemo, had stem cell transplant and now am on to my 15th cycle of Revlimid maintenance. I have been in complete remission since April 2011. I'm back at work full time, been on holiday to New Zealand and Italy, and am generally getting on with…[Read more]

hi Steveo

my kidneys were working only at 20% when we discussed SCT they still are I was told there was every chance with the chemo that went along with SCT it would probably put me on dialysis I didnt want to take that chance so no more was said hope this helps you
Regards Jo

Hi

It is so nice to see such positive reply,s to Mari.No matter how many people tell you there is light at the end of the tunnel,you find it hard to believe until you can see it for yourself plus we all know how this illness can change to become a fight for your life.no matter how old your children are,you still worry how things will turn…[Read more]

Hi

I can only tell you about my hubby,admitted with AKF,but kidney function improved,after a few blips,pneumonia which left him with wholes in his lungs plus blood clots,resulting in injections for 8 months, finally,referred to Kings for SCT.

Had SCT,but a reduced dose of chemo,enough to do the job,it worked SCT successful .
He had 2…[Read more]

Hi Tina
Yes I do have side effects, I have a poor sense of taste and smell so some foods really do nothing for me now as they taste so different and I have to eat lots of fruit and veg or get a very gripey gut and constipation. I get quite tired too, and I don't always realise how tired until too late and then the next day is difficult.
They…[Read more]

Dear Wendy
I'm in deep admiration of your fitness regime, I gave up playing tennis about 10 years ago after rupturing a calf muscle and realising that it could easily happen again so only do walking now! My daughter has caught the bug for the great north run and has done it twice now but says she sees it as putting something back not a love…[Read more]

Hi Tina
Welcome to the maintenance club! There are quite a few of us now. I've just started cycle 15 on the Revlimid and aspirin and still in complete remission. Hope all goes well for you.
Love Helen