Hi Helen

sorry I hadnt read your postcard. Your holiday sounds great,shame tht NZ is such a long way away. After completing the Manchester 10k run on Sunday 20th May I took myself off to the Italian Lakes and Switzerland for nearly two weeks and had a relaxing time, cruising up and down the lakes and enjoying the scenery, food and wine. Nothing…[Read more]

Hi Jean

I had horrendous problems on thalidomide in my first cycle after about day 14 when the Consultant told me to up the dose from 100 to 200 mg. I got a horrendous skin rash, fainted a couple of times, was shakey and had nerve damage,not in my feet and hands but in my back and head. It was stopped for about 4 weeks unti I recovered from the…[Read more]

Hi
Yes Mavis I know exactly what you mean, as a single person with no children I really dont fancy growing to very old age and since the government increased the pension age I will have to get to 68 years old in order to get my pension, so that would be 18 years post diagnosis. I know the life expectancy is improving but would be very surprised…[Read more]

Hello Teresa
How are you? I thought a lot about you while I was away. I'm over the jet lag now and feeling pretty good. Have you done much in your garden, mine is a wilderness, we've had so much rain every weed is 6 feet tall and all plants washed out, you get the picture!:-/
Love Helen

Dear Eve
He will be different but similar, you will both adapt to the new 'normal'. It is very hard to endure the SCT and you will both be worried sick, you are at the worst stage now, give him time and space to come round, every cell in his body has been poisoned and we can only hope that it works for a long time – keeping the alien invader ar…[Read more]

Hi David
There are some people who get much longer times than others too, i hope you are one of them. Though it is temping to look at time as a marker. And while it is an incurable disease, it's not terminal until there is nothing left to treat it with and you have overwhelming disease. Which does make it confusing. Especially now when we are in…[Read more]

Hi Vicki
Potted history
I was diagnosed 3.2.11.
Anaemic but no obvious bone or kidney damage, 60% bone marrow involved.
Started Myeloma xi trial 10.2.11, on Revlimid, Cyclophosphamide and Dexamethasone.
Went to complete remission after 2 months but 4 cycles is the minimum, so finished induction in June.
Cell harvest July,
SCT 15-17…[Read more]

Hi Lexi
I've not experience of this but someone else might, I'd be temped to phone the specialist nurse and ask her what she thinks and explain to her that mum won't tell the doctors
Love Helen

Dear Jean
Eva's and Dai's replies are first rate I think. I can't comment on the thalidomide as I had Revlimid, but they are right that the niggling and low grade side effects and feelings of 'body out of own control ' are common side effects of what are VERY toxic and powerful drugs. Frank will have to choose his own path here but I'm with the…[Read more]

Dear All
Wendy howcome you weren't asked to do the Myeloma xi trial, i thought it was a national trial? And you were diagnosed around the same time as me.
Indeed myeloma xi is still the luck of the draw, I went on Revlimid as induction and am now on it as maintenance too. Just before the computer randomisation after SCT they asked me what I felt…[Read more]

Hi Vicki
I had several chest infections while on the induction chemo,usually at the end of the cycle too. And i never felt iller than usual nor did I have a cough. Dexamethasone is a curious drug and it has a nasty habit of hiding infection, by making you feel well and cutting inflamation, giving bugs space to sit and muliply. The best plan is to…[Read more]

Hi Wendy
Thankfully even tea and coffee and alcohol count in our neck of the woods:-) Which is good, as I say I keep forgetting where I am with it all, I have to use specific cups and cross them off a list:-/ and very sadly I can't drink wine at all now:-( As it tastes funny since I started on Revlimid.
My holiday was a fantastic experience.…[Read more]

Hi David

Revlimid is not licensed as a maintenance drug by NICE at the moment so unless you are on the Myeloma XI trial and get assigned it post stem cell transplant you cant get it. This is a shame in the light of the recent clinical studies that show that it prolongs remission (effectively doubles it). I know this because I asked my…[Read more]

Ha Ha Tom, I dont think Vodka and Red Bull count towards the 3 litres and neither does my large glass of red wine now and then!

Ted it doesnt have to be water so you can make it up with fruit juices, dilute with squash, drink herb teas but not ordinary tea and coffee or alchohol as that dehydrates. I would ask the doctor at your next check up…[Read more]

Ha Wendy
I asked the same question ……. For the same reason……..l and she said, ' forever' cause when it comes back the mm can damage the kidneys before the blood results show relapse and the high fluid intake helps prevent damage … It's a bit of a bore though isn't it. I keep loosing count:-)
Love Helen

Hi Keith
I'm sorry its come back, but get away and enjoy the holiday as much as possible, and as Dai and Debs have said I hope the Revlimid does the trick, I'm on it too – without Dex , and everything tastes funny for me too.
Hang in there
Love Helen

Hi Alison
I had a 6 week wait between last induction therapy and stem cell collection. Then once they knew they had enough cells they gave me the transplant date for 3 weeks later. I imagine each hospital will have their own set up, ours doesn't use Hickman lines if possible so there is a difference to start with. Which hospital does your mum…[Read more]

Oh Andy
What can I say? It's so difficult, and very disappointing, and every other emotion all over again….. I'm so sorry. But you just have to do what ever you can and hope it works for as long as possible, are they going to repeat the SCT as well?
Hope the Velcade works well for you.
Keep in touch and let us know how you get on.
Love…

Hi Keith
Yes, got to get the priorities right and go for the holiday, I totally agree.
I thoroughly enjoyed our trip, my sister was an absolutely brilliant tour guide and our well placed relatives meant we could stay with them for huge chunks of time. So we travelled round the North Island quite a bit. We hired a fabulous beach house for the…[Read more]