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]

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]

Hiya David.
I hope your doing well with your treatments. I’m trying to catch up on everyone because it’s been difficult to get onto the forums lately.
The regime I’m on now is Pomalidomide for 21 days then 7 days off. With Dex taken on days 1,8,15&22. I have to go in for blood tests every week for 8 weeks to make sure I’m coping with the Pom and…[Read more]

Hi All.
Thanks for all your good wishes.
I’ve finished my first week of Pomalidomide and yet have no complaints – well except for the usual Dex effect! My bloods were ok Friday but it’s too early to start counting my chickens yet.
It’s strange even though Revlimid had run it’s course I have been feeling the best I have these past 8 months since…[Read more]

Hi Tina
Sorry read you were unwell over the holiday period. Good to know it was only a short stay in hospital.
I hope you have a good 2014

Every day is a gift
Live it to the full

Andy xx

Hi Harmony
First off you could smoulder for years yet so try not and jump the gun. It’s easy to say but hard to do but you’ve got to live in the present not the future. As Eve says worrying about tomorrow spoils today.
I have no experience of counselling though my wife went and found it very helpful.
I was diagnosed in oct 2011 told MM was very…[Read more]

Hi Sarah
I was told to avoid certain foods too. I even think there’s a list on the MyelomaUK site of foods to avoid. As you say it’s pretty much the same advice given to pregnant women. Ie no live foods no unwashed or unpeeled fruit and veg and sea food is best avoided. The advice is given because we MMers have low immunities and a stomach bug is…[Read more]

Hi Stuart.
Mine is the same operating system as Liz’s.

Andy.

Hi Jean
The edit button is to the left of the reply button – oh it’s not there now!
Hmmm maybe you only have a limited time to edit posts on a iPad.
Time to dust down the laptop again?

Andy x

Hi Stuart.
Me again 😉
I’ve just done a post posted it and when I reread it I spotted a mistake and when I tried to edit it I found the whole post disappeared in the edit box when I tried to edit it!

Andy