Hi Norman,

Sorry to hear that you have levelled out on Revlimid. I thought you might be interested to know that the same seems to have happened with me. 4 cycles in, and after an initial drop from 50 to 32, a second drop to 27, I have now gone back up to 28 and it looks like I will also be going onto velcade (or coming off the Myeloma XI trial…[Read more]

Hello Kevin
so glad you are back sorry you have been so ill I am glad you are a resiliant sod I have missed your posts and wondered what had happened to you

Keep Well Love Jo 😎

hello jET

Iam not in the under 50's group as I am a bit older but I read your post then your blog you seem to have had the same experiance as me I was diagnosed jan 2009 my kidneys have not recovered enough for an SCT this was my my choise as the chemo involved with the transplant could have destroyed my kidneys completely I could not bare the…[Read more]

Hello Kath

I hope you dont give up you have been a real inspiration to me I also could not have an SCT and reading that are still here 9 years later gives me a lot of hope that I can achieve something like it

Much Love Jo x

Hello Kathline

Sorry you have not been so well hope you are feeling better now I have missed you I agree about this web I also do not find it as user friendly as as the old one it was better seeing all the new posts at once

Keep well love JO X 😎

Hello Andy

welcome to the site it must have come as a big shock to you to be diagnosed with MM as it was with most of us I have never heard of it before you will find all the help and encouragement you need hear, and do look for a support group in your area they are a great help also

Kind regards Jo x 😎

Hello Bridget

I am well at the moment get PEP results on the 1st of march so fingers crossed I next go to UCH on thursday 24th Feb when will you be there.I
have a support group meeting this friday I believe we have a speaker from McMillan so should be interesting I will let you know all about it I am so glad your pain is getting a bit better…[Read more]

Hello Kay

good luck with the CDT it really worked for me I also had a rash we diScovered it was the Anti B they put me on ( CIPROFLOXIN)it looked like a german measles rash

Keep Well love jO X:-D

hELLO Gaye

so sorry you are feeling so unwell at the moment you have every rite to feel sorry for yourself I hope the RT treatment goes well and it will soon help with your pain

Love JO XXX

Hello Bridget

I did laugh I could imagine Dai conducting us in a chior I would be the one he would tap on the head a say mime it. Dex Dex Dex we should write a song perhaps Dai could, I know what you mean about fat face I am only on a small dose but still have a fat face! hope you feel much better soon have you had any relief from your RT…[Read more]

hi Bridget
Just to give another idea Im starting to think it could be the coproximol….took it again twice test and the horrid taste came back this afternoon. Got appt today to pick up cycle 4 drugs so will ask the question!
Debs x

Oh Bridget,

So sorry you're feeling so rubbish. It can be awful can't it. I have my sister in laws 30th on saturday….evening wear only…and I'm going to look like a hamster faced heffalump!!!

I didn't realise it was a common side effect the feeling of bruising, but I get that every now and again (can't decide whether it's dex, rev or…[Read more]

Hi Gill

I got two out of three pepperpot skull and Dexatude this word should make its way to the oxford dictinary
Love J0 x

Hello Sharon

I am sorry to hear about your spine I hope things get better soon could you please let me know what the nice guide lines are forwarn is for armed

Thank you Jo

Hello min

My name is Josephine but I only answer to Jo I live in Hatfield in Hertfordshire I retired in December 2008 aged 61 1/2 diagnosed with MM Jan 2009 went into AE after my docter sent me home with paracetamol my husband insisted I went to AE I had double pnuemonia renal failure and as it turned out MM
what a shock five months of CDT…[Read more]

HELLO angie and clara

Welcome to the site it will not halt all your worries but really helps you will find out most things here but you will definatley get support which is so important as most people have not heard of myeloma you can feel very alone David is very right about DEX so bear with it, it does get better and your mum and dad will…[Read more]

Thanks for the laugh David it cheers up the day
Love Jo 😎

Hello Min

Glad to hear Peter is feeling better now.Good news about your redundancy
when I was first diagnosed in the january Geoff wasa due to retire in the march his company let him go three months early with no loss of income or pension which was marvellous. I have the Myeloma diary it is really usful as you say, got it at the London…[Read more]

So true David do any politicians do their homework or do most just follow the party line like sheep :-/

Regards Jo

HI Min

On the continent the first line of treatment is Velcade plus DEX this means if there is any kidney damage the outcomes are much better
my consultant is Polish and he told me this
Love JO :-/