[JentayParticipant]

Hi Keith,
I was able to tolerate Velcade really well, far better than the CDT I had for my initial treatment. There were a few hiccups along the way, and I couldn't have the very final infusion of the 6 cycles as the soles of my feet went numb (they recovered), but there was nothing I couldn't cope with. It worked well, too, which is the main thing.

Is the Velcade being administered intravenously or subcutaneously? Having read recent info re subcu. it appears that the side effects are less but the treatment is as effective. I'd be interested to know if anyone has been offered it this way in the UK.

Hope everything goes well for you and it does its job.
Jen.

[JentayParticipant]

Dear Mavis,
I had CDT the first time round (cyclophosphamide, dexamethasone and thalidomide)I reacted badly to the thalidomide – throat, mouth and lips went numb and I was covered in a rash – so that was stopped. The rest made me feel dreadful, extremely weak so that it was a struggle to look after myself. I'm a widow and live on my own so being able to look after myself is very important.

My pps were extremely high when I was diagnosed: 76. CDT brought them down to 16 but that lasted just a few months. They were in the 40's when I was put on Velcade which brought them down to 3, a much better result. They've been low for a year but have suddenly shot up to 28, which is why we are discussing treatment. However, my consultant did say that he would consider everything as a whole, i.e. the fact that I feel quite well, before he puts me back on treatment.

Hope this helps and that you can put off having treatment for as long as possible.

Jen

[JentayParticipant]

Thanks everyone. It sounds as though obtaining Velcade for a second time isn't merely a pipe dream. I had feared that funding wouldn't be available for more than one round of it.

I shall definitely hold out for it, if and when it becomes necessary.

As for GPs being responsible for the drugs budget then it does send a shudder down my spine, too. My GP is great but he isn't an expert in all the fields of medicine. Hopefully, common sense will prevail and GPs will be influenced by the views of the various specialists.

Jen.

[JentayParticipant]

Thank you for your replies. It looks hopeful if at least a couple of people have been "allowed" to have Velcade more than once. I am working on the theory of better-the-devil-you-know which is why I am pushing for it.

I was diagnosed in Sept 2008 and the first lot of chemo was a nightmare – I have never felt so ill in my life. I was terrified of what would happen when I was told that I needed more treament in 2009 and pleasantly surprised when I tolerated it so well. Obviously, there were side effects but nothing I couldn't cope with.

I'm not due to see my doctor for another couple of weeks but I shall keep you posted.

Jen

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