Hi Gina,

How is your Mum getting on? Has she started her treatment? If so I have just completed my 4th Cycle – now on the 10 day 'rest' period… that is rest from treatment ie. injections but the treatment continues to work in your body so it is normally about 4 or 5 days into the 'rest' period before the side-effects of the treatment start…[Read more]

Hi Ivan,

May I wish you a reluctant welcome to the board, I truly wish you were not here!

But, as you are, welcome. CDT worked very well for me and I was in a right mess when I started… with horrendous bone damage… but within a few months I was in Complete Response and ready to move on to the next line of treatments. 😎

Dex in such…[Read more]

Hi Gill,

Its great to hear from you, especially with the good news about Stephen. Did they source the infection?

I truly hope that this was a blip and that he continues to grow stronger and fitter with all the right lazinesses in his bloods that keep him ahead of the game.

I read an article about a Mexican footballer whose family have…[Read more]

Hi Helen & Eve,

It was touch and go on Thursday… the Doppler Doctor threw a wobbler because his session had been extended… that's all there is to it as far as I am concerned (picked up from side-glances and looks of contempt from the nurses in Day Case although they are too professional to actually voice that contempt). I agree Eve, if I…[Read more]

Hi Gill nice to see Stephen has got over this hurdle,it,s a roller coaster ride,all the time,I just wish it would stop for a little while.
Did not see the article you mentioned but don,t you think it is strange how much it has increased in price over 50 years,£2100,cannot see them 50 years ago paying a high price to stop pregnant women feeling…[Read more]

Hi Dai
The problem is all bookings go through,a format you have to be seen with in so many days,the request is a piece of paper marked urgent just like all the other pieces of paper,this is what is happening all over the country.If the test is in high demand,they cannot cope with this demand because of staff shortage.if you were in hospital and…[Read more]

Hi Dai
The main thing Dai is you are having the treatment ,the injections,a scan will show how the leg is doing,so try to have agood weekend,massage does help easy the pain,i spend a lot of time on Slims legs,as it help circulation ,so it is worth a try,complains some times that i am heavy handed!!!.:-P
love Eve

Hi Ivan
I cannot tell you much about alternative treatment,there are lots out there,Took me all my time to get Slim to eat at one stage,drinking water is very important as it helps the kidneys flush through,your taste buds will change from,month to month.Slims always been a wine drinker,cannot stand the stuff now:-)(more for me):-P
My advice is…[Read more]

Hi Ivan
Eve again,your on ctd,remember to take DEX in the morning,and Thalidomide last thing of a night ,but I am sure they warned you about that!!! some people get mood swings on DEX someone coined the phase Dexattude,the wife will get use to it:-P
It will not take long to adjust to everything,a chart is helpful some hospitals supply them or…[Read more]

Hi Ivan
Sorry am late in replying but a warm welcome to this great band of folk, but sorry you had to join 🙁

Good Luck on your treatment I also (in feb 2009) started my treatment CDT and that was starting with about 50 pills a day 🙁 but i done it with the stem cell harvest and the stem cell transplan in december 2009 and her I am back at…[Read more]

Hi Sue,

Thanks for your update, its good to see how others cope with their treatment regimes.:-)

I spent 4.5 hours in the Daycase Unit yesterday – the last 2 hours waiting for the single busy Doctor on call to get back to me on what other treatment to take home with me as well as the 5 day course of blood thinning Enoxoparin injections… I…[Read more]

Hi Ivan
Just picked up on your post,welcome to the journey,may i say it is a massive learning curve,try just to take one day at a time:-)
I cannot add much more than has been said except to say,thing will get a lot better,this site will help to give you insight,and advice there are people ahead of you on this journey.
3000 people in uk a year…[Read more]

Hi Ivan sorry you have had to join our merry little band but you will find lots of help and support on here even if it is only to have a rant at myeloma and all it brings with it!! You are wise to take your partner in for your consultation , in the beginning there is so much that will be new to you, I often used to ask my husband what had been…[Read more]

Hello Ivan

so sorry you have had to join this group,you will be in shock and it will take a while to come to terms with it I dont think anyone truly does, as for crying I also have a close family we all did a lot of that.
This site is so valuable for help and information and the Myeloma uk help line is brilliant there is always a professional…[Read more]

Hi Lara welcome to our site there are lots of people on here only too happy to offer you support and we have a range of experiences from patients to carers, those like your dad just starting treatment and people like me who were diagnosed some time ago , 5 years in my case. I havent been on thalidomide myselfbut I know from others that the best…[Read more]

Dear Gina congratulations for your wedding, and you dont need lots of money to make it the best day of your lives — just each other and your families beside you !! I am appalled that those wretched doctors have allowed your lovely , lively mum to become so poorly when they shou;d have started treament ages ago Its no wonder you are angry , I…[Read more]

Hi Dai, i hope you are starting to feel well in yourself, i cannot even imagine what you people with mm have to go through each day of your lives. I am a carer and can see what my mum is going through but its still not the same as living with it. Its great to hear your updates you are always so upbeat. So keep your chin up and i hope things are…[Read more]

I know i have been thinking to do that. I think because my sister complained to PALS today they must have said something, also my mums gp has spoken to them.Hopefully when she starts treatment on monday she will start to feel better hopefully. Thank you for your reply xx