[adminKeymaster]

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?

[adminKeymaster]

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 chemo. I'm also lucky I guess as only my Day 1 perfusion is at the hospital, the other 3 are done at home by a nurse. And yes, whilst I love the Dexamethasone (I love being up all night, full of manic energy, vleaning, being acute etc.) it is pretty foul really, and make me feel dreadful too.

Take care – its a great drug.

N

[adminKeymaster]

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

[adminKeymaster]

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

[adminKeymaster]

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 a question of how determined you are. Whereabouts in France do you want to go?

[adminKeymaster]

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

[adminKeymaster]

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 though I crave food (and I eat too much) in fact the only thing that tastes good is water.

I also eat prunes to keep my bowels free (I think some of the toxic metabloites go out that way too).

What I find really weird is how when I feel 'rough' I can't imagine feeling ok ever again, or beleive I ever felt ok, and when I feel ok I cant beleive I ever felt dreadful to the point of being glued to my bed unable to even read, listen to music or watch a film. So, courage the bad days pass…

[adminKeymaster]

Hi Keth, what did the hospital say?

[adminKeymaster]

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 Dexaamethasone)/ I'm younger than your dad (52) in good general health, and I'm fairly fit. I'm alos fotunate to have normal white blood cell, red blood cell and platelet counts. So its not comprable, however the fug regiment itself is not causing me any major problems. Can you get the doctors to explain? I tend to be inquisitive enough to get answers, as does my wife, and I chose a doctor who communicates and explains.

I wish you and your dad the very best of luck. Velcade is a great drug. I hope he comes throough this quickly.

N

[adminKeymaster]

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

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