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Thip - 26 Jun 2007 23:16 GMT

I went to see him today, and while he agreed there's not a lot anyone can do
at this point, he ordered the full range of blood tests and went ahead and
scheduled my next MRI at Emory (every 3 months--I hate that drive). While I
was there, we were discussing new treatments and he happened to mention that
Vertex's looks very, very promising. He doesn't think we can begin to look
for it for about 3 years unless the FDA relents. He also said it appears to
cause skin rashes in some people, some of them so bad the skin actually
sloughs off, but it kills the virus in 3 months.

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greyhackles - 26 Jun 2007 23:30 GMT

>I went to see him today, and while he agreed there's not a lot anyone can do
>at this point, he ordered the full range of blood tests and went ahead and
[quoted text clipped - 4 lines]
>cause skin rashes in some people, some of them so bad the skin actually
>sloughs off, but it kills the virus in 3 months.

One never knows, but I think your new gastro might be guessing on the
pessimistic side (which is *my* job ;-)

The rash thing is clearly problematic and I don't think they have a handle on
it yet. But I think if nobody actually dies during the phase 2x trials and
they use the phase 3 trials to find the optimum dosage (which is pretty
typical of phase 3 trial goals) we could see vx950 released to general use in
less than two years.

In the mean time, keep on keeping on, Thipper. It's good your new guy wants to
take his own "look around" (so to speak ;-) before he settles in to some
routine...

Cheers

/greyhackles

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Thip - 27 Jun 2007 00:55 GMT

>>I went to see him today, and while he agreed there's not a lot anyone can
>>do
[quoted text clipped - 29 lines]
>
> /greyhackles

I'm like the Energizer Bunny, Grey--I just keep going and going and
going.........

He made reference to some sort of skin disease VX950 causes in some cases,
I didn't catch the name (although I'll try next time IF I remember), but
it's the disease that actually causes the skin to fall off.

One ego-building comment I got from him--he looked up from reading my file
and said, "Huh! You sure don't look that sick." Yeah, you da man, Doc! I
like you!

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Dwight - 27 Jun 2007 02:31 GMT

>>> I went to see him today, and while he agreed there's not a lot anyone can
>>> do
[quoted text clipped - 39 lines]
> and said, "Huh! You sure don't look that sick." Yeah, you da man, Doc! I
> like you!

Hang in there Thip, maybe it won't be too much longer before there is
something for us. If it would just make some of the fat fall off I would
be ready to try it tomorrow. My labs came back a few weeks ago and
everything looks better than ever, so I hope I've got the time to keep
waiting. I'm ready to kill the dragon, maybe VX950 will finally be the
tx I've been waiting for. The doc gave to go ahead for another cruise
(this time to Alaska), and this time I won't be on tx. Should be a lot
more enjoyable. Looks like Victoria will be about as close as I get to
Pendor Harbor. Don't remember where Russ is, but think it's further
north than Juneau. As I've already told Michael, I'll yell at him while
in Seattle.

Dwight

Dwight

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Michael Arends - 27 Jun 2007 03:21 GMT

Smiling Wickedly, Dwight answered:

>>>> I went to see him today, and while he agreed there's not a lot anyone can
>>>> do
[quoted text clipped - 52 lines]
>
> Dwight

:-)

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Waterspider - 27 Jun 2007 19:37 GMT

"Dwight" <Dwight@not_real.com> wrote...

> .... The doc gave to go ahead for another cruise (this time to Alaska),
> and this time I won't be on tx. Should be a lot more enjoyable. Looks like
> Victoria will be about as close as I get to Pendor Harbor. Don't remember
> where Russ is, but think it's further north than Juneau. As I've already
> told Michael, I'll yell at him while in Seattle.
> Dwight

Too bad you won't be seeing Pender Harbour this time, but if you get in to
Dawson City, you might run into Pender Harbourites Jane Reid and Malcolm
Duncan (they own an ice cream parlour and restaurant on the main drag).
They're my very, very good friends who were tremendously helpful when I was
sick and doing tx. My name (to them) is Myrtle Winchester.

Russ has a website, www.tannersacre.com, which includes a map to his place
in (I think) Palmer.

Apparently the Alaska cruise is one of the best for wildlife viewing a
spectacular scenery, plus a number of very cool little sidetrips from
various ports and fabulous dining. You'll have a great time, and don't
forget to bring your camera, with extra memory cards.

Waterspider

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Dwight - 28 Jun 2007 00:20 GMT

> "Dwight" <Dwight@not_real.com> wrote...
>> .... The doc gave to go ahead for another cruise (this time to Alaska),
[quoted text clipped - 19 lines]
>
> Waterspider

I'm even bringing a laptop to download the pictures just in case I take
too many and run out of memory cards. :)

Dwight

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eileen - 28 Jun 2007 19:55 GMT

> >>> I went to see him today, and while he agreed there's not a lot anyone can
> >>> do
[quoted text clipped - 57 lines]
>
> - Show quoted text -

Have a great trip Dwight, you deserve a break.
eileen

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eileen - 28 Jun 2007 19:49 GMT

> I went to see him today, and while he agreed there's not a lot anyone can do
> at this point, he ordered the full range of blood tests and went ahead and
[quoted text clipped - 4 lines]
> cause skin rashes in some people, some of them so bad the skin actually
> sloughs off, but it kills the virus in 3 months.

Hi Thip,

I'm glad you liked him anyway. Let us know how you make out with your
tests.
Vertex!, let's hope this goes through, 3 months would seem like a
picnic but the skin
rash sounds itchy. I can barely stand what itch I have now.

eileen

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