Hi Carol its great to hear your good news please dont heasitate to share good news with us it always lift our spirits and as you say lately there has been a lot of sad news .I hope you start to feel the benefits of a lower dose very soon although it does take a bit of time to get it out of the bloodstream Heres to lower doses for a long long time…[Read more]

Hi Dai
I do see were you are coming from,but we do need a spokesman or woman,who can explain the way we see things.Have you e mailed him.
If you are coming to the end of treatment,may be they can give you extra dex and have a dexy day LOL
Glad to see you being positive remember you are living with cancer not dying with it,living in Deal in…[Read more]

Hi Ivan,

I had a mild form of peripheral neuropathy for 3/4 years before being diagnosed with Myeloma. In the main it was general numbness but I also suffered bouts of pain in my big toe and I was told by my GP that it was a form of gout.

The interesting thing is… when my PN kicks in at night (usually when I'm lying down in bed) I get…[Read more]

Hi Ivan
The service for cancer patients seem so different through out Uk'
I have at least 3 telephone numbers and 1 is 24 hr even holidays someone is on call.
When i have used it,I was told to go straight to A&E second time to call ambulance but both times a nurse from the unit met us,and i have been told in future to ring in,the reason for…[Read more]

Hi all – a little bit of GLOOD NEWS!

Re: Myeloma 11 trial

We saw the specialist yesterday who was really pleased (pp still at 0) and has reduced the revlimid from 25mg to 10mg so I am hoping that some of the side effects reduce. I have lost quite a bit of weight so I am hoping that will stop now and my appetite improve. I don´t have…[Read more]

Hi Eve,

I'm willing to go (if Craig hasn't either given up or found someone else) because I realised that my reason for not just saying 'Yes' in the first place was a negative act. I was saying 'maybe' just in case I am either ill or feeling the side-effects of my last cycle (the conference falls at the end of my final rest period) but that is…[Read more]

Hi Dai
We have something on those lines and maybe everyone does. Anyway, we got a folder when we first started treatment which logs all visits and treatments – it also provides a brief intro to chemo,basic glossary etc. To be honest I haven´t really used mine as it was just yet another thing to cart around (and lose on bad days) but I can see…[Read more]

Hi Ivan I agree with Eve your hospital is the best place for answers to this one It could possibly be a side-effect and my advice would be to ring them for any new troubling symptoms rarher than your local gp Good luck let us know how you get on Bridget

Hi Cathy
I have to ask do you know what CDT is!!!! Eve

Hi Ivan
Have you been on the booze ,!!! gout only joking, never heard of it myself,
The pain must be bad for you to come on here and mention it!!!!

You must remember Ivan,that most gp do not know much about mm!!!
Have you not been given numbers to ring for any symptoms !!!!,If you feel so unsure please ring the number,??
Ring tomorrow!!!!…[Read more]

Hi Min

When I was first diagnosed and in hospital the food was so vile I was losing weight by the day so my husband and daughter smuggled in my preference large Mac D's cheeseburgers I am sure they kept me alive
Hope Peter is home and well soon

Love Jo:-P

Hi Sarah
How are you holding up,I hope the family are keeping you busy,but still finding time for your quiet moments,The harvest must be gathered by now,Hoping you are drawing strength from every thing around you.
best Wishers Eve

Good for you Dai you have my vote love Eve

Hi Craig,

I have been giving it a lot of thought and, barring any last minute glitches or health hitches, I would like to attend your conference.

I will be canvassing opinion from this forum to ensure that my contribution is a reflection of a broad spectrum of experiences, needs and desires.

I will await any instructions etcetera,…[Read more]

Hi Craig
Can I suggest you look under Treatment (up date on cycle 5 of Velcade )!!!
It might give you some in site to the problems,we have it is mainly the last 6 postings.
I was trying to find someone who,has Bence Jones kappa Light Chain,who like My husband had 6cycles of CTD who was considered to be going into remission.bloods good kappa…[Read more]

Hi Min haha I love the image of the pir of you tip-toeing out of the hospital for big macs!! I bet Pter felt a whole lot better as Sundays are horrible in hospital, apart from the lunches!! I hope he gets home today for a few days of normality , which you must both be desperate for. love Bridget x

Hi Annette its good to hear from you and no you were not at all boring Great results from your treatment plan and it certainly sounds as if its made a big improvement in your life I think the fatigue is hard to avoid , it either comes with mm or with the drugs we take , I know I have become a champion cat napper Heres to you staying well for many…[Read more]

Hi Sue thats wonderful to hear you are still in remission 2.5 years on and for many more years yet hopefully. I know what you mean about living with the uncertainty of myeloma but I suppose all we can do is live each day to the full and enjoy every moment As you say never give up Heres to staying well love Bridget x

Thanks for the good wishes for tomorrow – we have crossed fingers, toes and everthing else!

If the Specialist thinks it´s wise for me to go so far we are thinking of investing in a horse transporter but my husband would have to drive down to Cataluña where our place is and I would have to fly. I did ask if I could go down with him and help b…[Read more]

Hi Min
Have you ever considered the pay per hour.24×7=168 hours divide by that into 73 pound.answer peanuts and I am not a monkey
Min I am surprised you do not take something to help you,I will be honest with you,I would ring up and book an emergency appointment,do not take no for an answer,The reason I say this,is when your crying or shouting…[Read more]