How is John Preston

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Jamie - 29 Sep 2004 11:17 GMT

Carolyn

How is John. I ask as much for myself since I live in Sussex. My PCa is
gradually progressing and one of these days I'm probably going to need
Chemo.

Out of interest to everybody, I've been engaged in a trial at St Georges. It
consists of taking 100 mg per day of Cyclophophamide. My psa had been going
up quite quickly and was at 25 in May when I started the trial. As of last
week it is 23 and has ben stable at that since June. I'm under a Dr Pandah
who is the first Doc that has been really positive and very knowlegable
about all the trials going on worldwide. As you all know it helps if you've
got confidence in you Doctor.

Cyclophophamide has been used in large doses as a Chemo drug for many years
so the trial can be provided on a less stringent bases as the side effects
are well known. On my low dosage I've had no side effects whatever.

I'm still on Prostap which I found better than Zoladex. When I was told that
Hormone treatment works on average for about 18 months I was doubtful but it
seems that this was about the correct timing for me. Sorry about that Steve!

Please give us an update Carolyn because as Palmer et al say " knowledge is
power "

Jamie

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Carolyn Preston - 29 Sep 2004 12:22 GMT

Hi Jamie

John (49yrs) has now had 8 cycles of 3 weekly Taxatare and 2C4
(omnitarg) at the Royal Marsden London. His PSA seesaws between
30ish-50ish on a weekly basis. Not too many side effects, hair loss,
eyelash/eyebrow loss, paper thin skin which breaks and bleeds very
easily (due to steroids) and fatigue being the worse.
John completed the 6 cycles on phase 1 of his clinical trial and they
have decided to continue on until side effects become unbearable. Phase
2 of the trial had to be abandoned after two patients became very ill
after the first increased dose and were hospitalised for several days!!

John is very well in himself, he is a valiant fighter and will not give
in to this dreaded illness. The hospital call his treatment "palliative
chemotherapy" and I find it so hard to look at the man I adore and who
looks so strong and understand that we will not grow into old age
together.We are making the most of life, next week we are going away for
a couple of days to stay at a holiday resort with 5000 other bikers to
enjoy music, drinking and laughter. We are also moving to a larger house
so things are hectic at the moment.

John only had a partial response to Hormone treatment and became
refractive after only 9months so it seems that you were both unlucky in
that department. I wish you well in your clinical trial and "may the
force be with you"

with love
Carolyn
UK

> Carolyn
>
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>
> Jamie

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Lorelei - 30 Sep 2004 08:41 GMT

> Hi Jamie
>
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> Carolyn
> UK

Thanks for the update, carolyn. I often think of how John is doing.
Curt will be having full repeat scans today (later, I am working
nights right now) and then we will be going to the Mayo Clinic in
Rochester for a 2nd opinion (finally Curt has given in to my wishes)
take care and stay strong.
Lori

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Alan Meyer - 29 Sep 2004 16:58 GMT

> ...
> Out of interest to everybody, I've been engaged in a trial at St Georges. It
[quoted text clipped - 9 lines]
> are well known. On my low dosage I've had no side effects whatever.
> ...

Jamie,

I'm glad to hear that this therapy is holding your cancer
in check. I did a search on cyclophopamide and
prostate cancer in PubMed and couldn't find any
hits. I did see that it has been used successfully
with ovarian cancer and lymphoma and other things,
with some people with ovarian cancer living for many
years after treatment with it.

Thank you for participating in the trial. The results
are indeed of interest to all of us.

Best of luck.

Alan

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