Hi Dizzyliz ( love the name!) welcome I am glad you found us. It must be very hard watching someone you love go through a procedure which makes you feel so ill no wonder it has got to you From this point though things do get better , once the blood counts start to rise he will begin to feel better , although it can seem ages before that happens…[Read more]

Hi Fiona lovely to hear things are going well for your mum Its amazing how things can change in just a short space of time Good luck with your running , I am in awe as even before myeloma I have never been able to run!! Do let us know how you get on and I will look out for you on tv Best wishes to you and your mum love Bridget x

Hi Eve I am glad you feel better after getting that off your chest and thats one of the things thats so good about this site!! I do get frustrated by all the waiting around, the worst time is when you are waiting to go home from hospital and have to wait hours for drugs!! But now I try not to get too annoyed as it just makes me feel worse and…[Read more]

My hubby kev had his sct last week it's day 8 today he's not very well at all
Felt so useless today wanted to take it all away for him! New this was coming but it still
Upsetting for kev and me and you wonder is there a light at the end of the tunnel?
Kev was diagnosed august 2010 but had the symptoms best part of 2010
Been such a shock I…[Read more]

hi mike

sorry to have to welcome you to the site but you will find your online friends here are so caring and helpful
I had type two diabetes before i was diagnosed so unfortunatly when taking the DEX I had to go on to insulin as it raised my sugars so much. Myeloma uk is a brilliant organisation they are so helpful and the line to the nurse…[Read more]

hello Dia

My husband and I went to the london info day last october it was a brilliant day and was over almost before it began as it was so informative and a very positive day I really felt uplifted Myeloma uk do a brilliant job even the catering was first class the break out groups were good with one just for carers which my husband found…[Read more]

Morning Mike,
Hope today goes really well for you…I remember being a bit manic the first day…don't think it was the drugs, just a wierd sense of anticipation of what might come! It all calmed down then!
Not sure what advice they'll give you re the revlimid, but I used to take it in the morning with my dex. I found that I didn't sleep well at…[Read more]

Jet,
I think you might find your figures are your lightchains rather than your paraproteins if you're talking about hundreds and thousands.
Debs

Jet

having hyercalcaemia is bad and with the akf,Once you were put on drip with in 24 hours you would have seen a good improvement,drinking lots of water to flush kidneys out helps skin.Water seems the key to having good effect on skin and hair flushing excess drugs out of kidneys is important.The bone infusion helps with the pain relief.there…[Read more]

Hi Mike and welcome , sounds like you were lucky being picked during tests for diabetes , so many of us have to wait a long time Good luck on the trial , you will be very well looked after just dont hesitate to let them know your side-effects if you get any, doses can always be altered to suit you Heres to your fiftieth , its the new 40 you know…[Read more]

Hi Mike,
Welcome and sorry again that you've joined us all!
I am on the Myeloma XI trial too….did 4 cycles on revlimid starting in November, and after plateauing am now on the velcade arm for at least 4 cycles. The terminology is probably all a bit alien still for you (sorry, that wasn't meant to sound patronising!) but just ask away and…[Read more]

Hi Dai,

We went to the London one last year and I have to say while I was dreading how long the day would be, it was over before we knew it, and I wished I'd had longer to go to more of the sessions!!

The only tip to making the most of it perhaps is for you to split when it comes to the split sessions, and that way you can report back to…[Read more]

Hi Mike

sorry you are joining this club,but you will find it an experience in it self. lots to look at and lots of info here takes sometime to take it in.
My partner is coming up to 3cycle of chemo 21days of ctd myeloma x1 trial.

This site has helped me a lot,some great people on here,have a good journey

Hi Eve I believe you are right in thinking the dose is determined by our doctors , based on individual circumstances. When I was diagnosed I had a massive tumour from my spine into my ribs therefore I was on 80mg dex twice a day for 3 weeks to reduce the tumour, thankfully I have not neede such large doses since However in both my relapses I…[Read more]

Hi Jet and Bridget

I do not think gender is the key,My partner on ctd takes 20 tablets 2mg dose 4 days running then repeats dose after 7 days.his chemo cycle is 21 days!!!!

has a good quality of life when on dex although a bit short tempered,takes a few days off dex and is very very tired,hot and cold,not wanting to eat.

The strange thing…[Read more]

Hi Jet the taste thing happened to me when I first had it Ihad been in hospital for 6 weeks and after my back surgery was on massive doses of dex, 80 mg twice daily, needless to say this made me very greedy!! Some friends were begged to bring me something savourywhich they did bless em!! Well I ate a whole bag of baby bells before they had sat…[Read more]

Hi Jet I am glad you find dex so exhillirating , unfortunately I am the polar opposite Apart from the insomnia I retain fluid and although I was on the same dose as you Ido have a hamster face The last few months being on Rev and Dex have been awful for the first 5 days of the cycle My whole body was painful and tender for days so now I am going…[Read more]

Hi Gill poor Stephen what a bummer!( oops soory bad pun!!). What about anti-sickness injections , might make it a little more bearable love Bridget x