Hi Keith
As a short term fix, I have found that posting a short message then going back in to edit gives you all the time in the world to add your thoughts if interupted by a cup of tea.
Regards Min

Hi
I had my redundancy meeting with HR today, I was his first ever interview and he read from an idiot sheet throughout. Really filled me with confidence. He told me I will go on 31st of March. I begged him to make it earlier, telling him he could save the tax payer a months wages if he let me go in two weeks instead but it fell on stony ground.…[Read more]

Dear Bridget,
Sorry your feeling like sh***. Hope its not the dex, Peter only takes it at the start of the new course of Revlamid. Are you taking it again? or is it just a build up off last week?
Whatever, your allowed to sound off if its making you feel so awful. I know that first week was bad for Peter and only now is he begining to feel like…[Read more]

Hi Min My name is Sue its my husband Michael who has MM and has since the age of 45. That was 15 years ago, hes had 2 SCTs Thalidomide, Velcade and now hes on Revlimid and has been for approx 15months We live in Nottinghamshire and treatment is between our local hospital Kings Mill and Nottingham City.
By the way love the pic of your dog, we…[Read more]

Hi Min and Gill the article on steroids which was in the press last week said that steroids deposit body fat in specific areas These are the base of the neck and the tummuy area I know I now have a humpty tumpty tummy now whereas before I had a waist no matter if I was overweight What joy !! love Bridget x

Hi Clara how disappointing to hear your dad wasnt given his results, you could do without that sort of mix up I am sure .Sorry but I am not up to speed with AL but I am sure you will get answers from others who do know Most of us with myeloma have weakened bones and it is standard treatment to give monthly infusions of drugs such as Parmidronate…[Read more]

Hi Gill
Never heard of a buffalo hump, they refer to peters 'Hump' as kyphosis of the spine is this similar? It is not as bad now as it was at the outset but its down to kyphoplasty and exercise.
Im curious does Stephen have a belt of additional skin at the waist, peter does due to collapsed vertebra suppose all that extra skin has to go…[Read more]

Hi Sharon,
I thought this too when Peter was on Velcade but unfortunately you cant have the blasted jab until they take you bloods and check how they are responding to it. One day his platelets were so low he could not have it.
The other inconvenience is they don't send the script to the pharmacy until they have these results and the pharmacy…[Read more]

Hi Col,
More questions again Im afraid, have to learn all I can while I can. Never heard of Intratec before now. But it sounds like it must work.
Have you had this from the outset? Does it stop you getting all those nasty bugs? like flu and chest infections? Is the dex 10x2mg?
Anyone who has managed to keep going on one medication for so…[Read more]

Oh Dear keith,
You Have got the dexitude today, don't worry we understand. You are forgiven particularly as you have managed to make me understand what happens to some of my posts; never thought of timed out. Just thought someone was getting personal with me for taking so long!
Maybe the answer is to copy from time to time if your having a long…[Read more]

Hi Elizabeth it was that clever Min that started this post I am so glad she did its lovely to hear about everyone !I am so pleased you still like your hat and even more pleased my sewing has held up!!Have a good weekend love Bridget x

Hi Sharon well if you do go there you will be in good company !! 5 sessions sounds promising , I hope they let you home soon afterwards . I have been impressed with the results of my rt , the pain isnt constant now and can disappear for a couple of days at a time , I can cope with that! There was an excellent piece on radio4 the other day( see I…[Read more]

Dear Sharon thank god you knew to insist but what a heck of a shock!! I was in the same position when they eventually diagnosed me and its so frustrating not being able to move independently , I feel for you. I remember them coming round and checking the reflexes in my legs every few hours as they couldnt understand how I had been walking around…[Read more]

Hi Keith,
I read the article about the subcutanious velcade too, and mentioned it at consultation at the time that Peter was on it and the subject of it probably causing his Thrombosis( he was filling in a peculiar form for the authorities who collect unusual side effects from medication.) I got the impression that as this was not a uk idea it…[Read more]

Hi everyone, great idea Min ! My name is Bridget I was diagnosed with mm in 2006 after 3 vertebrae disintegrated. I had a spinal reconstruction and am now known as metal micky!! I had an sct in 2007 which gave me 18 months partial remission. I was then on the Myeloma X Trial which gave only a short break This time round I was on velcade for 3…[Read more]

Wow Colpot,
That sounds amazing and its so good to hear of a good experience.
I wonder did you ever have an SCT. Or will you ever have an SCT?
Is your maintenance dose the same as when you began taking it? Where are you being treated? Sorry for all the questions but it is so nice to hear of someone who has stepped outside the usual courses…[Read more]

Hi Colpot what a brilliant post , very encouraging for people like me who have just started on Revlimid. thankyou . Long may it continue perhaps you should go for a world record!! best wishes Bridget

Hi Gavin thank you for letting us know . In my experience you get very well looked after on these trials so fingers crossed it will be trouble free and you can have your sct and be free from major treatment for a long time . I have just started on Revlimid and the lovely dex !! A few unpleasant side-effects this week but I am hopeful it will…[Read more]