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 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 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]

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]

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 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]

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]

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]

H Keith
Peter always found that his platelets had recovered in the 10 days off period, and on the one occasion that they did not he simply missed one injection of velcade, until they had recovered. Hopefully you will have made that recovery whilst you have had your rest.
Min

Gill
I do hope Stephens black eye is healing to a lovely greenish yellow by now. I was amused as last time Peter was on Dex he almost had a punch up with a queue jumper on a garage forecourt.
How is the Puppy settling in? still keeping you up at nights or now sleeping with her new brother.
also hope Stephen is coping with Velcade and look…[Read more]

Go SarahGo
Very brave decision, but I can understand why. Life is just too short.
You do cope, we had 18months with no wages and a bloody porshe to pay for. Its long since gone but it bled us dry for a long time. What I plan to do is make a list of groceries every week and send Peter for it as I am hopeless and just get carried away whenever I…[Read more]