Hi All

We seem to have moved away from the 3 litres a day post on to holidays,
a much better topic in my view! I agree with Dai, going on holidays especially whilst on treatment can be tricky and difficult. Its all about confidence building and Tom, I think you're right too, little and often to start with.

The first time I went away for the…[Read more]

Hi Ian

I am really sorry to hear that your mini allo has failed, I cant understand how this happened given your blood tests were so good and that you had achieved 100% donor chimerism. You must be pretty pissed off. It goes to show that not enough is known yet about this procedure and whether it is worth the risk.

Anyway I hope the Velcade…[Read more]

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]

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]

Thanks for your support all, Dai, I managed to trundle round in 68 minutes! It was one hard slog though, much harder than I remember when I did it in 2009 but when I found out my time it was the same as 2009 before all this started so I am really pleased. I thoroughly enjoyed the buzz of doing it, the support of the crowd, and have so far raised…[Read more]

Hi Rosie

Sorry to hear about your relapsing after 4 plus years, I had a stem cell transplant last September and dread each 3 monthly blood test but so far so good but way to go. You dont say how old you are and I dont like to ask but I guess it is relevant to your treatment options! You could ask your consultant at your next appointment what…[Read more]

Hi Mari

its mmunder50club.ning.com

Wendy

Hi Helen
Hope you have a great trip to New Zealand, sounds wonderful

Wendy xx

ps loving the hair!!

Hi Andy

good news that your blood tests are all OK,at least your body is coping with the high PP numbers, I hope that the revlimid and the dreaded dex will sort out the paraproteins in time.
Keep us posted

Wendy

Hi Ann and Pete
ditto what Helen said, its really important that you know what to take on what day in the cycle and I am surprised that this wasnt explained to you or you werent given a chart by the haematology unit. I personally wouldnt take anything until you have this explained to you by the haemtology ward or your support nurse when they are…[Read more]

sorry to hear this news as well, she seemed so positive and cheerful,thinking of her family and friends at this time

Wendy

Hi Carol
Yes I am on face book – wendy duffield Manchester should do it, there are quite a few forum members on it

I also discovered recently that there is a Multiple Myeloma Support Group on Facebook, the members are mostly from the US but it is quite good and if you are on facebook you can join

Anyone welcome to be my "friend"!!

Wendy

Hi Tina

its hard to manage all the pills isnt it especially with the shock of the diagnosis and everything else you have to take in. A pill box thing might help.

I was assigned to CTD on the myeloma XI trial and had to stop after approx 1.5 cycles due to side effects of Thalidomide such as nerve damage and skin rash. However everyone is…[Read more]

thanks Paul, how are you doing, you must be approaching stem cell transplant time?

Wendy

Hi all

just to update on my recent 3 monthly blood test 7.5 months post transplant
my light chains were within normal range and the ratio between them the lowest its ever been. Yippee!! Can breathe a big sigh of relief and relax for another 3 months.

Best wishes all

Wendy