MMM
Peters muscles which he had worked on replacing for months went south!Muscle tone shot to that hot place your not allowed to type, after 4 cycles. Week as a kitten and tired also. The 3rd scyle started to show it had stopped working altogether but went on to do the 4th just in case it was a blip. Now on Revlamid, not so severe, but very…[Read more]

Snap Gill,
Peter was never a beer drinker, and still is not (or lager) but he sure looks like he has a beer gut poor soul. However this beer gut goes all the way round his waist!
Im going to keep an eye out because he always has the hump on didn't know it was a buffalo though LOL
How is the Pup? and when will we see him?
Luv MIn

Hi Jet,
You poor thing you certainly are going through the mill.
Your progress is very similar to my husband's who was found with kidney problems first,( read you blog)you are lucky though as it took a further 4months with kidney people before he was diagnosed with mm.
He is also on Revlamid and dex, having just finished his first packet.
It…[Read more]

Hi David,
This subject is one that gets me mad.
Why cant you get an early pension/retirement from the government when you have a diagnosis of this type. It has to be better than begging for other benefits. As you say, it wont be a loooong retirement. Unless something remarkable comes on the market to cure the beast. Then they can chanage the…[Read more]

Hi Susan,
What a shame that you cant have velcade, but cheer up, as you wont have to sit around in clinics waiting for bloods to be counted and chemists to make up your velcade. You can sit in the comfort of your own home and take a tablet instead.
All the trials have shown that it is a remarkable drug if it works on you and if for any reason it…[Read more]

Thanks you Gaye
The itching has stopped for Peter But continues for me so I am just taking anti histamins daily.
Peters nurse told us that for the purpose of travel insurance, Revlamid is classed as a therapy or treatment not chemo, and if it means that I can get cheaper travel insurance then I will go with her explanation.
I have paid into a…[Read more]

Welcome Back Shirls,
I was getting a little worried when we had not heard of you for a while, but Im so pleased to hear that things are progressing for you. Its kind of nice that you are begining to come around just as spring is about to come around the corner.
Briliant idea to get a puppy for summer time as running in and out the house for the…[Read more]

Just a quick one only me. Did you mum not get a little chemo booklet? It should set out what tablets to take when and have the little boxes to allow your mum to write down how she feels when she takes them. Like side effects or not. Just helps when she returns for next consultation as its so easy to forget things. Should also contain the phone…[Read more]

Dear Gaye
If you cant moan to friends who can you moan to? and thats what friends are for.
Platitudes are not going to take away your intolerable pain;
Im still suffering from my sciatica and it can't possibly be anything like you must be going through. I know mine will go away with rest and time; you on the other hand need some better pain…[Read more]

Hi Clara,
I think its possible your dad could be offered Revlamid if he is involved in a trial, the usual 1st line treatment is CDT, followed by velcade. I believe the amloid is where all of the bad bits of myeloma collect in one place usualy an organ, and the same medication is used for both. Taz who occasionly posts on here is married to a…[Read more]

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 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]