[pjollopParticipant]

Hi, Kidney function was very low requiring dialysis. My general recovery from the auto sct – and indeed the kidneys – took 3 months of constant improvement in strength and appetite. The really tough time was when I was in hospital having the stem cell transplant…but when look at that against the 18 months of quality life I've enjoyed since, I [u]personally[/u] think it was all well worth it. But each person must make their own decision since they are going to have to live with the results.
keep on keeping on folks!
Peter

[pjollopParticipant]

Hi Badger and all. I did have an auto sct despite having poor kineys. They gave me the Melphalan over 2 days instead of 1 to help the kidneys. (I did tell them that I didn't want to end up on dialysis for the rest of my life and they adjusted drug doses to take account of my wishes)

It was a rough month, and a 3 month return to strength but the Myeloma has been dormant and invisible for 18 months now (I am only on Zometa as I have 4 compression fractures of the spine)

I just find it interesting that there appear to be two opposite attitudes to treating Myeloma.

1, Hit it with massive doses of everything you've got. (The nuclear option)

or

2. Start with the smallest dose. Increase it till side effects appear then reduce slightly and hold. (the Berenson option)

I have no idea which avenue is the best – but need to watch the debate. It is reflected in so many things like : Do we give Velcade intraveneosly with the side effects…or subcutaeneosly (with less chance of side effects) So the Nuclear or Berenson approach is evident in every facet of our treatment. Since most of our treatment in the UK is dictated by NICE I am waiting to see which camp they decide to follow.

[pjollopParticipant]

hi, Badger, what is UCH ?
My understanding at the moment is that it isn't licenced for use Sub Q by the [u]FDA[/u] Why are we waiting for the Americans when (as I understand it) the research was done by Prof Gareth Morgan [u]in the UK[/u]. I really do not understand what is going on when this research would [b]seem[/b] to radically improve the quality of life for so many people. I visit
support groups and the number of people who get side effects forom Velcade (pn etc ) is significant. I am scared of turning into Victor Meldrew but am happy to if it will help:-D

[pjollopParticipant]

I knew if I waited long enough I'd come into fashion 😀

[pjollopParticipant]

I've read a suggestion from a doctor about Vics 1st defence and intend trying it if I ever get round to going on a flight. It might be a good idea for others to try if they are flying to a holiday destination. (please post results) 🙂

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