Dear Gaye I am so glad you have got a date now , at least they can start to relieve your pain and hopefully it wont be too complicated. For most of the time now I dont have that awful pain , it does come back for a few hours at a time but its not constant and I can deal with it Havent seen any daffs yet but its definitely milder and brighter , at…[Read more]

Hi Jen and Keith the disappearing veins are a problem for me too and in fact it is the one thing that can reduce me to tears! At my hospital they use PICC lines, these are a fine tube fed through a cannula in your elbow , up tp tour neck and then down to a major vein in the chest It is completely painless , being fitted and removed , only a small…[Read more]

Thankyou for making me laugh out loud!! Hard to believe but even harder to keep a straight face Hope you have a good day love Bridget x

Dear Min I hope you enjoyed your birthday and now you are officially allowed to grow old disgracefully !! You can now wear outrageous hats, jump in puddles , talk to yourself and answer , in fact anything you fancy ! Of course the men in white coat may come after you !! As for men in white coats– Sacha could definitely charm me into feeling…[Read more]

Hi Keith really good to hear you and Velcade are getting on so well Long may it continue!! love Bridget

Dear Gaye & Bridget.
You could both do with a break(pun) and get some relief from the pain, Is you RT having any effect yet Bridget? and as for you Gaye well time to start thinking of getting in touch with Pals. There is no need for anyone to suffer silently. Wouldn't it be nice to have a Holby on your doorstep and one of those characters to…[Read more]

Hi Steph,
Sorry to hear your Nan is not in good health and may have mm too.
I think if you nan has other health problems then the mm may be the least of her problems, as her general health has to be reasonable to be able to withstand some of the more toxic drugs that are used to treat mm.
However never say never. Once she has had her…[Read more]

Hi Clara welcome to our merry band . At the moment you must be feeking so overwhelmed with it all but it does all become clearer. My advice would be not to google everything but take it one step at a time Myeloma is such an individual illness andthe descriptions of stages etc on the net are very often outdated now Newer treatments are emerging all…[Read more]

Hi everyone my diary was given to me by my specialist nurse perhaps yours may have some of their allocation love Bridget x

Hi Angie welcome from me too , you really have found the right place for answers and support .Even if your mum and dad arent up to reading up on myeloma yet they will be glad of your support As Min has said it does get easier to understand as treament gets going and the initial shock wears off. In the beginning it seems to take ages for treatment…[Read more]

Hi folks
I have taken a photo and attached it to this post so you can see it. You apply online to this organisation or you can call up for it, it has lots of pages to record hospital visits side effects treatments etc its not a yearly one it will possibly last for several years its absolutely great, Available by donation. I personally…[Read more]

Hi Angie and welcome to our happy little group,
You have come to the right place for support of whatever kind you need.
It is indeed a complicated subject and I struggle to understand the blood side of it, but have learnt to describe the bad cells as fighting against the body then getting carried away with themselves.
It is all so…[Read more]

Ha ha David good one to start the day !! love Bridget x

Dear Gaye how are you feeling ? Any news on your rt yet? I am now addicted to scandinavian tv police dramas on bbc 4 .Wallander got me hooked , even better than the Kenneth Branagh versionNow on Saturdays we watcg 2 hours of danish drama , The Killing I highly recommend it lots of characters that you care about and very well acted As long as…[Read more]

Hi Min I hope increasing the dose does the trick this time too In the past dex has caused water retention problems for me so I have Ferusomide at the ready Could your itching be caused by anxiety ? You have so much on your plate and the waiting for a date cant help , hopefully your lovely employers will let you go very quickly I hope you are doing…[Read more]

He was on 10x2mg for the 1st four days, His swollen legs and feet are a sign that something is not working, last time he was on thalidomide he was on massive doses in pulses and his kidneys cleared up overnight so hence the reason for the increase…
wouldn't you just know it that he has had swollen everything for about 7-9 days now and today…[Read more]

Dear Min thankyou thats very reassuring . I realised today I had slipped up in taking Revlimid at the same time as dex so tomorrow I will take it last thing and hope to sleep like a baby!! What dose of dex was Peter on? I am on 40mg for the first 4 days of each cycle and was told it may be possible to reduce it after a short while. Your new…[Read more]

Ok now that Silent Witness is finished I can recommend The Big C
a comedy of sorts about a cancer sufferer. I missed the 1st one but laughed a lot at the second one. Some hard language, but not unnecassary, and usualy apropriate.
Think its channel 4 on Thurs
Min

Keith
Peters dropped to less than 80 at one point and they said as long as it was up to 50 he was ok, it was not till after his 2nd cycle that he was diagnosed with thrombosis, so they kept a really tight check on it as he was also on blood thinners. Good luck with your velcade, on 3 rd cycle it stopped working for Peter.

Hi Bridget
Pete rwas feeling absolutly dreadful the first week of Revlamid, throwing up runs, pains and tiredness. But it did allow him to sleep better.
He is now 14days in and he feels better but still tired. He has some problems with his kidneys but following a briliant clinic visit today, we saw a new Dr from Germany, who has worked in the…[Read more]