Hi Susie.

There still a lot of discussion going on about the benefits of Zometa at the moment. Some claims have been made that it has an anti myeloma effect but that hasn’t been verified.

I’d been on Zometa for just over two years before I had to stop it due to ONJ. At last years info day I asked if I would be able to restart Zometa when my ONJ…[Read more]

Hi Sue.

I would recommend the counselling.

It’s a massive blow to be told you have cancer and then be plied with lots of pill which basically poison us. I went through a hard time after being diagnosed and it took time for me to get back to some sort of normalcy.

Quality of life for me is the main thing and as he is in remission there should be…[Read more]

Hi all.

Had a wonderful time in Kefalonia the weather was very kind though the wind did get up for a couple of days. Now recharging my batteries for our next trip. We’re of to Belgium in a few weeks for a long weekend so I’ll probably have a few Belgian beers Tony whilst we’re there.

Every day is a gift.

Andy xx

Hiya Susie.

No one knows is the answer to your question. However the chance of getting to remission with Velcade, in my view, and being drug free again is worth going down the drug route. Obviously that’s only my point of view. There is always the argument of quality over quantity of life that must weighed up.

I can’t really recall many problems…[Read more]

Hi all.

Thanks for all your good wishes.

I’m actually soaking up the vitamin D as I write this beside the pool in sunny Kefalonia. It’s lovely and warm but not too hot. A beer or two also help keep the temperature just right.

Thanks for that compliment Annlynn. It’s very humbling to know I can inspire someone but also very satisfying that I’m…[Read more]

Hi Susie.

I’m doing ok though it looks like my treatment is starting to fail.

I’m actually sat in the sun on the Greek island of Kefalonia writing this post. It’s our first trip abroad since my little run in with pneumonia.

As regard to the blue badge I think every council has different qualifying criteria so your local council maybe the place…[Read more]

Hi Susie,

If you have the higher rate mobility award on DLA and I suppose PIP you automatically qualify for a blue badge.

Every day is a gift.

Andy xx

Hi Hillbum,

we’ve been using nowicantravel for a few years and have had no trouble with them. We do it over the phone as most insurance websites aren’t geared up to looking at individual circumstances. We just got our insurance through them for a week in Greece that covers all my Myeloma and my wifes diabetes for £58.

When we first started…[Read more]

Hiya all,

Well here I am as promised posting on my Dex induced sleep deprived night! Though I maybe jumping the gun a bit as it’s not even midnight yet.

Anyway a little update – Last week I was feeling a little under the weather Hmmm more under the weather than normal I guess I should say. Anyway I had a cold and a cough but that’s no big deal…[Read more]

Hi Peter,

if I have ANY problems or worries I call the day unit, or at night the open access number, and let them know I will be shortly paying them a visit as I did last Friday. They encourage us to do that. Luckily I only live 10 – 15 minutes away so it’s no hardship for us.

I hope everything gets sorted out on Tuesday for you Peter.

Every…[Read more]

Hi,

My advice is simple AVOID anyone with any sort of infection it’s not worth the risk. For your information infections are the biggest cause of death amongst myeloma patients.

Every day is a gift.

Andy

Hi Peter,

Sorry to hear that you had to stop taking Pomalidomide. As I said previously it’s a bit of a marmite drug. Hopefully you’ll get along better with the new drug. Is it Farydak you’ll be trying next?

I’m doing ok at the moment thanks. Got a stinking cold at the moment but otherwise ok. We had four nights in the Lakes last week it wore me…[Read more]

Hi Georgie.

Sorry for the long delay in responding to your post as I’m over 50 I don’t regularly check this part of the forum.

As regards your original post regarding running it is generally advised to avoid high impact sports as myeloma weakens and damages bones. I myself was a runner and was training for the London marathon when my first…[Read more]

Hi Peter.

Glad your medic was on the ball and switched you to Pomalidomide before it was deemed to expensive for us meer mortals that rely on the NHS. I hope 2016 sees you and Pomalidomide building a good relationship.

Every day is a gift.

Andy.

Hi Vicki.

I really hope things are starting to get better for you. I can’t imagine how hard it’s been for you. My heart breaks a little more every time I read of an online friend passing. I applaud you for your fundraising though my personal thought is maybe you should take a break from the myeloma world and concentrate on a bit of “me” time.

I…[Read more]

Hiya Dawn.

Great news that your feeling well I would guess that’s a good indication that things are going well. I hope you get a great late Christmas present and go into the New Year and start a long drug free period.

Every day is a gift.

Andy xxx