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 Andy, I didn’t know you got vitamin D in beer, perhaps Euro beer is different from bitter!
Enjoy it mate, I’m not envious at all!
regards
Tony F

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 dazz, I found the effects of the chemotherapy were cumulative. It is true that everyone reacts differently so hard to predict effects for you. I guess just being diagnosed with MM was a life changer for me; I had always been fit, well and active and adjustment to a new way of being has taken time. Be kind to yourself, ask lots of questions…[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, as Jeff says contact Macmillan they will help you to complete the necessary paperwork. In my case Leicester CC received the completed form, phoned me and we did the payments over the phone. Cost was £10 for 3 years
Regards
Tony F

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]

Hi jaylo, I reread your first post and realised you are new to myeloma. Sorry to have to welcome you here, it’s a place that we don’t want to be! You must have noticed that there is a wealth of experience here and everyone is willing to help. You may find that there is also a myeloma support group in your area, worth giving Myeloma UK a call. Hope…[Read more]

Hi jaylo, I think that if I was in your shoes I would ask your GP to refer you to the haematology department, I would much prefer to be under the care of a consultant than a GP. Nothing against GP’s mine is a treasure but if anything goes wrong you have immediate access to the treatments available, plus, the consultants and the specialist nurses…[Read more]

I haven’t had a holiday abroad so can’t advise re travel insurers but will ask the specialist nurse who told me she had a few who had been recommended by other patients.
I wanted to book China now I am in remission (SCT end August 15) but Consultant said not to go anywhere there wasn’t a really good health care system and ideally stay in Europe. I…[Read more]

Sorry to hear that you have joined us Bridget, but this is such a good place to come to for support and empathy. There is also a Facebook support group “UK Myeloma Support Group”.

The Myeloma UK helpline is really good, give them a ring if you feel you need to clarify anything you have been told.

Good luck with the Chemo and let us know how you…[Read more]

They didn’t talk to me about percentages, just said when I had completed 6 -8 cycles of chemo.

If you have a Nurse Specialist perhaps ask them although the previous answer is very clear.

Kind regards

Karen

Hi, I do hope you went straight back to the hospital for advice, particularly with a spiking temp. I haven’t been on for a few days so know this reply is a bit late.

When I was 6 weeks post SCT I got a  cold sore which prompted them into action, bloods checked, acyclovir prescribed etc. So I guess act quickly on any concerns re health is…[Read more]