Deb x

The Perfect Pair is a wine tasting event with a difference…and we hope that you or your friends/ business colleagues might want to get involved. The event is being run by me, Deb Gascoyne, and I’m a…[Read more]

Is anyone else suffering from neutropenia after long term Revlamid use?

I have been on Revlamid maintenance therapy since my SCT 4 years ago. It’s been great, no sign of the myeloma returning but it’s beginning to take its toll. A few weeks ago I had to stop treatment due to a very low neutrophil blood count. And it’s showing no sign of…[Read more]

I got diagnosed in 2009 with myeloma and am lucky to be 3 years in remission post SCT.
To celebrate I am using my 40th year to raise awareness and money for Myeloma UK by doing a ’40 C…[Read more]

I decided this year to do 40 Challenges B4 40 to raise money for Myeloma UK before I hit 40 in January 2015. The plan is to try to raise £10,000 through various challenges, and through getting other people involved. I hope that it will also help to raise…[Read more]

my every sympathy to you all Andy you hospital sounds on top of things thank goodness cannot say the same of yours Eve and David its a big worry to me what sort of care I will get if I need the hospital again it was pretty good last time but who knows who you will
get another time it seems a bit of a lottery get well…[Read more]

my kidney score creatinine 500 I was fine all the time I was on velcade as soon as I stopped the kidneys got worse they cannot explain it so they have put in a fistula dialysis access this has gone wrong and narrowed so they put balloons up the vein yesterday venoplasty full of bruises now
Regards to Slim
love Jo

great news news your journey has been the same as mine I believe we joined this forum 5 years ago at the same time as you say never give up keep well
Love Jo

you have had a time of it lets hope now you can get better treatment at the new centre you are lucky to have a good one near
keep well love Jo
Hi eve how are you and slim is slim keeping ok my kidneys are rotten they have now fitted a fistula just in cse not what I wanted but hey ho
Love Jo x

wonderful news its what we need to cheer us up long may it last for you as they when the going gets tough the tough get going that’s you
Love Jo

wonderful news its what we need to cheer us up long may it last for you as they when the going gets tough the tough get going that’s you
Love Jo

wonderful news its what we need to cheer us up long may it last for you as they when the going gets tough the tough get going that’s you
Love Jo

the velcade really worked for me o paras at the moment the kidneys got worse AFTER I finished chemo funny that so much so they fitted a fistular in my arm any way I must be an ornery b*gger as they have improved at the last visit to the clinic My consultant told me of the new improved velcade which is supposed to be even better than the…[Read more]

sorry slim is still unwell did you know there is Velcade 2 a follow on which is supposed to be even better than the first one I have just or three months ago finished velcade didn’t need platelets at all but had several blood transfusions not been on this site for weeks could not get on every way I tried my son in law did it for me
Love Jo x

how are you doing keeping fairly well I hope I don’t know what they did to this site I have not been able to access it for weeks had to get my son in law to do it My Velcade treatment has worked but my kidneys got worse once the treatment had finished they don’t know why so much so they fitted a fistuler in my arm fortunately had a bit…[Read more]

hope all is well for you and Frank havent heard from you for quite while
Lovc Jojo x

I think a double is called for wonderful news for you and Elaine you will be able to sit back and relax for a couple of months
BIG (HUGS):-P
lOVE jO X

its a wonder you had the energy to complete it time for a rest now how is the velcade going well i hope:-)
Love Jo x

sorry they could not get enough of those little devils so better luck next time. gave up on my hair and had it all cut off so now its just wash and go my grandson said the other day when looking at photo's i like that one you had hair then gave me a big kiss so kids are cool:-P if they love you is doesnt matter
Love Jo x

Dont get down hearted it seems like they are not giving up on you and your body could probably do with a rest let us know how you are getting on keep in touch:-P
Love JO X

I think this is good news if anything it will buy you a bit of time i am glad your nuets are good and the purdah can end I have the velcade subcut once a week much less side effects PN etc after my sixth cycle UCH want me
to have velcade once every two weeks stretching it it out to 9 cycles less agressive they say then thalidomide…[Read more]

I am keeping everything crossed for you I am really glad you are positive and the news about the treatment is sounding better thinking of you
Love Jo x

I am on the 5th cycle and after the 6th UCLH want me to go on fortnightly velcade and extend the regime to 9 cycles instead of 8 I hope it works can only give it a go:-Dhope you enjoy your trip to see your daughter
God bless Jo x

If you can afford it why not I am not a great house wife if you dont move things you dont notice the dust we go out a lot if we can Your results sound good so perhaps not much longer for treatment I am on cycle5 get swollen ankles a bit but ok other wise the graduates sound fun they must have tsken you under their wing a surrgate…[Read more]

my MM journey was diagnosis in Jan 2009 pneumonia' renal failure and MM had CDT which gave me 3 and a half years remission kidneys still only 20% but hanging on started Velcade at the end of last year hoping to get a good remission again this is very much a personal journy I think at your mums age she needs to take her time and take…[Read more]