Hi Simon, thanks for your message, great job you have! If ever you get to Leicester look me up.

After my first stem cell transplant I was at a really low point, the local cancer centre offered individual relaxation classes, the woman also practiced reiki, after those sessions I was so relaxed about things, amazing. We have just returned from…[Read more]

Hi Simon, I guess that I am a lot older than you. I was scared s******s when I was told that I had myeloma, I had never heard of it before and immediately went home and googled it, that made it even worse, I thought that I would not last the year. But I did, I had stem cell transplant number 1, had 26 months with no drugs and no treatment except…[Read more]

Evening, I managed 26 months from my first SCT. Like your husband I managed the first quite well, though was in for 21 days. I had the second in March 2016, was in solitary for 14 days then off home. I think I managed the second one better than the first, maybe I was aware of what was happening and able to deal with the treatment better, though it…[Read more]

Hi Michael,

I have heard of necrosis of the jaw as a complication of Zometa. I do hope this isn’t the case for you.

I have been in cr since August 2015 following a SCT and have Zometa every month. I wondered what symptoms you experienced.

I know that Myeloma doesn’t like Zometa but having been on it for two years I wonder about whether to carry…[Read more]

Evening, Myeloma UK produce a leaflet listing many insurance companies that offer travel insurance, I guess you can access through this site.

regards Tony F

Hi all.

Unfortunately when the forum was changed a few years ago it was virtually unusable for quite a few members. Messages wouldn’t post the kept disappearing and there was logging in problems too. These problems took time to resolve and by the time they were resolved an awful lot of members had move on to the Facebook group.

I agree with…[Read more]

Hi Paul

Welcome to the Myeloma club. I’m sorry you are joining us as myeloma is such a horrible disease. I hope the biopsy went ok and wasn’t too painful. I’m due one in the New Year.

The first thing you’ll notice is that no two patients have the same journey treatment and outcomes are very much an individual thing. There’s nothing much I can…[Read more]

Hi Scooby.

I was prescribed tramadol by my GP for my spasms.

Every day is a gift.

Andy

Hi Finn,

I don’t know what is available to me till I see my consultant on Thursday. The discussion with my specialist nurse was just a bit of speculation. I’ve only had a response from two drugs to date, Revlimid and Pomalidomide, nothing else has worked for me.

Hi Jan,

My scalp is healing nicely thanks. Though my thigh where they took the…[Read more]

Thanks Rebecca.

What a lovely post it’s given me a real boost thank you xx.

Well to my latest news. My PPs have continued to rise and all discussions are now about what happens next. My specialist nurse and I had a discussion about where I maybe heading when I picked my latest round of drugs up. It seems like there may be a few options open to…[Read more]

Thanks Rebecca.

What a lovely post it’s given me a real boost thank you xx.

Well to my latest news. My PPs have continued to rise and all discussions are now about what happens next. My specialist nurse and I had a discussion about where I maybe heading when I picked my latest round of drugs up. It seems like there may be a few options open to…[Read more]

Hi Susie.

The hospital were I get my myeloma treatment charge £3:00 for 12hours after a 20 min free period. The other hospital I’m frequenting lately is free for blue badge holders which I have.

I get my bloods done at my GPs practice now to save a trip to the hospital and £3:00 lol so now I’m only at the hospital once every 28days. Unless I h…[Read more]

Hi Jeff.

I didn’t know until recently that it was a notifiable condition. Fortunately when I was on Velcade, two cycles, I didn’t get it bad just a little loss of sensation in my fingers and toes.

Every day is a gift.

Andy xx

Hi David.

Can’t think of myself as a hero! David. I’m just doing whatever it takes to get by. But I thank you for the sentiment it gave me boost.

Every day is a gift.

Andy

Hi Susie

Yes I’m still on Pomalidomide and Dex currently on cycle 37 ..

If you want to find out what I’ve been up to lately I’ve posted in the Treatment group .

Every day is a gift.

Andy xx

Hi Mark.

Dex is an evil drug and affects us all a little differently the ups, downs and sleepless nights are well documented. I take 40 mg every Tuesday morning. I’ve been taking Dex for over five years now and still get caught out being a bit short fused, cold callers be aware, on my down days even though I tell myself it’s the Dex!

Every day…[Read more]

`Hi.

Just copied this from http://www.gov.uk

Peripheral neuropathy and driving

You must tell DVLA if you have peripheral neuropathy.

You can be fined up to £1,000 if you don’t tell DVLA about a medical condition that affects your driving. You may be prosecuted if you’re involved in an accident as a result.

Car or motorcycle licence

Fill in form…[Read more]

Hi.

Just copied this from http://www.gov.uk

<header class=”page-header” style=”margin: 0px; padding: 0px; vertical-align: baseline;”>
<div style=”margin: 30px 0px; padding: 0px; vertical-align: baseline;”>
<h1 style=”margin: 0px; padding: 7px 0px 13px; vertical-align: baseline; font-family: nta, Arial, sans-serif; font-size: 48px; line-height:…[Read more]