you might also find this interesting : http://www.nhsconfed.org/NATIONALANDINTERNATIONAL/NHSEUROPEANOFFICE/OURWORK/Pages/CrossBorderHealthcare.aspx

This is very interesting. Could you clarify in what way it is easier to get treatment and reimbursement in Spain than in France ? Would a European Health Insurance Card help?

http://ec.europa.eu/social/main.jsp?catId=559

In fact on reading that I discover it wouldn't help as the EHC doesn't cover planned care only emergency care. As far as I…[Read more]

It sounds like he has very low platelet levels given the bleeding. I doubt the biopsy caused the pain as the pain was present prior to the biopsy, was it in the sternum or the pelvis?

Are you sure there is no loss of bones – it would seem a logical explanation for the back pain, though of course the back pain might be independant of the disease…[Read more]

I had minor pain up to diagnosis, then with treatment it went away and the bones healed (I had about an inch missing from a rib). I think it was the steroids that got rid of the pain and the Bisphosphonates of course that led to the healing. i guess I'm lucky.

Does paracetemol work, or is it much worse than that ?

Thanks, this is very much what I do with thalidomide and dex …

Is it a very good treatment? Should we all be interested in what it can do for us? Do you have any information? It sounds like a Thalidomide analogue – is it?

As a Velcade junkie (starting cycle 6 some time soon) I know what you mean, but I really think we should count ourselves lucky as it is a very targetted drug and the side effects, though horrid (I get flattened and everything tastes horrid and I tingle all over) its so much better than what the breast cancer patients are going through with their…[Read more]

I eat prunes in good quantities (5-10) – i soak them – this keeps me loose. I also have glycerine suppositories in my medicines bag, but have only needed them once – but I'm afraid that the bleeding might be to do with platelet levels so perhaps you should see if they are below normal and raise it with the consultant.

Good luck

N

Sorry about the typing errors. I'm writing on my phone.

Hi I take Velcade so have an idea of the constraints. The blood tests you could certainly get done in France and I'm fairly sure you could come to an agreement with the hospital in the area you want to go to have the Velcade administered. The hard part would be setting upbrhe direct billing, but Im daily sure you have the 'right' to do this. It's…[Read more]

Dear Roz,

That is terrible and you have all my sympathy. It seems he was diagnosed very late and it seems that he was very unfortunate that the cancer did not respond to treatment on a long term basis and that he suffered from extreme side effects.

With my best wishes,

Nigel

Hi,

What is your treatment cycle?

I'm on Dexa, Velcade Thalidomide on 3 weekly cycles with daily thalidomide and Velcade (1mg/m2) on day 1, 4, 8 & 11 and Dexa (4%0mg) on day 1,2,3,4.

I feel very rough on day 5 & 6. I find that drinking a lot of water makes all the difference – by a lot I mean 3-4 litres a day. I find anyway that even…[Read more]

Hi Keth, what did the hospital say?

Hi,
I take Dex, Velcade & Thalidomide – 40 mg Day1 -4, Thalidomide daily, Velcade 1.3 mg/m2 Day1-4 and Day 8-11 in three week cycles. This is all done in outpatient and home care. I have side efects on Days 5,6 & 7 – that is slight tigling, lethagy (exhaustion). But apart from that I tolerate the drugs very well (I even enjoy the…[Read more]

Why can't you travel to france during Velcade cycles, the side effects? The need for injections?