Hi Ozzy.
I was on Revlimid CRD for 22 cycles and other treatments before that CDT etc I was on tinzaparin and I injected myself over 700 hundred times. I’m now on a pill as Eve says it called Rivaroxaban and I take one a day so I’m no longer looking like a dart board. I go abroad a couple of times a year and haven’t paid more than a hundred pounds…[Read more]

Dear Dusk.
Unfortunately we don’t know anything about you. Your experience of medical matters, your age, where your being treated, your history leading up to diagnosis etc etc.
So giving advise or support tailored to you is difficult. So I guess some assumptions will be made.
I wouldn’t belittle any point of view you have. I may not agree with…[Read more]

Hi everyone
I’m back on the beer whoops I mean Pomalidomide started again Tuesday. My neuts were 0.7 on Monday yeahhhh.
Had my bloods checked Friday and my neuts were up to 1.2 which is high for me. So went out for a celebratory drink last night.
I’m expecting my neuts to drop as I get further into my cycle but hopefully not so far that they need…[Read more]

CDT is used for initial front line treatment because it is very effective. Also a cheaper option I must admit. Velcade is not a wonder drug it has serious side effects and it is also considered to only give short remissions. Just because drugs are new doesn’t mean they are more effective than established treatments.
In the USA you get insurance…[Read more]

Oh I think most patients with Myeloma have a multi disciplinary team working for them – I know I have. From my specialist nurse up to a Professor at another hospital. I’ve seen them all at one time or another too!

Andy.

Hi Jeff.
From my time on this forum the question of the best hospitals for treatment does come up occasionally. I know Dia moved from Wales to Nottingham because he felt it was in his best interests to do so. The major problem is for people who don’t live near a “big” hospital they get seen at their local hospital but they may not have a “big”…[Read more]

Hi everyone.
Well here I am it’s a week tomorrow errr nearly today now that I was discharged from my little stay as a guest of the wonderful NHS. I’m still feeling ok, though I was feeling ok before I was rushed of to hospital, and I take the last of my antibiotics tomorrow morning.
I’m at the day case unit Monday for blood tests and a decision…[Read more]

That’s great news David.
Let’s hope it stays that way for a long time.

Every days a gift

Andy

Hi David.
Glad they’re on top of your DVT at last. As been pointed out its a well known side effect of Revlimid and all the Thalidomide based drugs. I’ve been on anti coagulants since diagnosis. Must of injected myself over 700 times. I’m now on Rivaroxaban so at least I’m not stabbing myself any more.

Every day is a gift.
Made more pleasant not…[Read more]

Hi Elaine
I’ll look out for Bathams next time I’m shopping! Who am I kidding shopping lol. Though I will keep my eyes peeled for it and try it.
I’ve just had a stay in hospital and I’ve been taken off Pomalidomide till I recover from whatever was ailing me. I only had 3 of the little devils to take to finish my first cycle but a temperature 38.6…[Read more]

Welcome to the horrible world of myeloma Dusk.
As someone who has not been on “great” myeloma journey I’m going to through my thoughts in the ring.
First at diagnosis aged 53 I was told myeloma is a very treatable but incurable disease. I was started on the usual CDT with the view of SCT a few months later.
Now to cut a longish story short I’m…[Read more]

Hi Carol
Please try not to worry I don’t believe I was ever in remission. I suffered side effect from the start and I told my consultant last week about this as I never felt well. Also I have no faith in him whatsoever this is the main reason for me going to the Christie centre. I just hope & pray that this time around they get it right. Good luck…[Read more]

Hi Carol

I had iced lollies and they seemed to work for me, good luck withheld transplant, I had my first on in May 2013 and in November 2013 was told I was in remission. On Monday I was told the cancer was back so remission was only 7 weeks, looks like I have to do it all agains
Anyway, try the iced lollies and as I said before Good Luck ❌❤️❌

Hi Everyone & thank you so much for taking the time to reply.
I was at the hospital today & had a bone marrow extraction (owwww) they let my sister come in with me which definitely helped me. I go back tomorrow morning for a skeletal X-Ray & I have received an appointment at the Christie Centre in Manchester. Just hoping that whatever I choose…[Read more]

Good luck today Tom as you set out on the next stage of your journey. I hope everything goes to plan and you are drug free again soon.
Don’t forget to keep on taking your vodka.

Every day is a gift
No matter the weather.

Andy xx

Hi Liz.
My wife is from Grantham and has a house in Nottingham. So we go there quite often. Yes we go to the Nottingham beer festival when I’m fit enough it was a very wet visit in October.

I’m on my third week of my first cycle and as yet no major problems with side effects. Got the usual Dex effects – sleeplessness and moodiness

Every day is…[Read more]

Hi David.
The new site is having a lot of teething troubles. Stuart the web master is looking into them. He has a discussion page on the off topic forum and I know he is looking into the editing issue.
I get a cough and hiccups when I take my Dex I always have. I have to be careful when I drink as it sets me off hiccuping. I sometimes seem to…[Read more]