Hi Vicki and Colin

Sorry Colin that you have the dreaded lurgy. Gastroenteritis is such a painful and dibilating thing. I hope you get over it soon.

Frank and I have just did three laps of the Unit. Consultant in and he asked her if he could come off the drip to have a shower and a bit of exercise. He has been let off til 4.30. He was…[Read more]

Hi Dai

Sometimes these experts forget what it is like for the person with Myeloma,and we can make up all the excuses for them,we know they have to be practical,but I do think they need to go back to school and take lessons in compassion and politeness .

I would not wish this disease on anyone,but they should show some understanding how we…[Read more]

Hi Lesley

During my chemo, I stopped colouring my hair basically because like you I was so tired and had back pain from my collapsed vertebra. I wish someone had told me to get a haircut asap during cycle 1 or 2 before any possible side effects from the drugs kicked in. I had so many hot flushes and night sweats during treatment that my hair…[Read more]

Well done Babs. Happy birthday cells 🙂 and may you have many many more. Franks were born on 5 march. Still in hospital. Some hic cough but hope to get him home soon

Take care have a ball and enjoy your holidays
Love Jean x

Hi Jean
Lovely holiday thanks, bit of a shock to the system coming back to yet more snow! I had low phosphates and calcium after SCT and had lots of bags of the stuff very slowly so had to drink loads to get the fluids in, not easy when you feel sick!, I've also been on calcium tablets ever since as it stayed low, it's a very odd feeling of…[Read more]

Hi Lesley
I coloured my hair as usual during my chemo treatment and only stopped when I had my transplant date, the hairdresser did use a mild colour no bleach, now I'm going the whole 9 yards, it does wonders for the morale.
Love Helen

Hi Sandie

So sorry to hear of your mums news. Life can be so unfair and some get dealt really bad hands i don't really understand about "grades" but your post indicates that it's not the worse kind, but any sort is bad news. My thoughts and prayers are with your mum and your family. Take care and God bless
Love Jean xx

Hi Megan

It's good to read that other people have the same problem that was rectified. (Boy that sounds weird but hope you know what I mean 🙂 . They were supposed to take the Hickman out yesterday – didn't happen and then they said today. Frank just phoned to day that it would not be happening. The dr told us yesterday that the longer the…[Read more]

Hi Helen

How was the holiday? Hope you had a ball! 🙂 Lovely hot weather. We were snowed in for days. Fortunately one of the boys has a 4×4 so he could get in to take me to hospital. Then they all came and dug my car out and made a path for me to drive.

On sunday night Frank was feeling weird and they put him on the ECG. They asked if he…[Read more]

Hi Ali
Thank you, I'm feeling really well now so it's a bit of a pain to have rising numbers, bmb after Easter to see what is going on, fingers crossed that it is a long time before I have to start treatment again.
I'm just back from sunny Lanzarote, back to the freezing sleet and snow, can't believe it's still so cold. Has your mum managed to…[Read more]

Hi Jean
I see Frank is doing ok still? Any sign of coming home yet?
Love Helen

Dear Eve
I'm just back from the sunshine to the current snow! and in catching up on the various post I am saddened to hear of Slim's 10% rise. When are you back at the clinic to find out what happens next? I always feel so close to you as our diagnosis days were so close together. I go for bmb after Easter. It is all so disappointing…[Read more]

Hi Eve,

Many thanks for the welcome to the site.

When I was searching for information on the MUK 5 and 6 trials, I found no specific mention of the inclusion criteria requiring participants to have taken Revlimind prior to these trials, but they did specify the maximum number of previous treatments in their inclusion critera, presumably…[Read more]

Val very good news. Well done long may it continue 😀
Love Jean x

Hi Jan

Welcome to the site,and I am sorry you are going out of remission.

I might be wrong on this but reading present information. To be eligible forMUK. 5 I think you have had to had Revidimide ,you do not say if you have been on MX1 trials???.
I thought the criteria was you have had to have had Revidimide ,before acceptance on these…[Read more]

Hi Vicki and Colin

Thanks for thinking of us. Things were going good – neutrofills went up to 1.8 so he came out of isolation. Next day dropped to .2 so back to isolation. Today he is feeling better even got a bit of appetite back. I brought him in melon an ice cream and he wolved it down. Antibiotics finished and so have all IV's. he reckons…[Read more]

Hi, This is my first post, but I have been looking at this site for the past year meaning to participate at some stage. The range of help and advice offered on the site is tremendous and much welcomed. At aged 53, I was diagnosed with kappa light chain myeloma in April 2010 and undertook 4 cycles of CDT followed by a SCT in August 2010.…[Read more]

Hi Joanna

I am sorry you have had to join us,you are so young with children if you want to join the under 50site you have to apply look on this thread I think Deb,s up,d the post last time.

If you do not mind joining the rest of us,it would help if you went on the Newcomers bit,just introduce yourself and tell people a little about…[Read more]

Hi Alco

You can not base having Myeloma purely on urine,other factors are taken into consideration.it is not worth going into unless you are diagnosed with myeloma,low white blood cells can open up many problems,so do not go scaring yourself thinking you have Myeloma it is uncurable.

Go back to your doctor or speak to a well qualified…[Read more]

Hi Dai

It is good news,I hope if the medication you are on does not work I hope you get this one 500 people only,as you said it has to show in urine,

I worry that as Slim did not respond to thalidomide how well will he do on Revidimide ,and if the same conditions apply,he will not qualify for the new trials.

Any one heard from…[Read more]