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Voice Post: Portland, Seattle & Clinical Trials

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Aug. 31st, 2006 | 11:51 pm

VoicePost
949K 5:07
“Well, a lot has gone over the past week. It has been whirlwind trip up to Portland and then a last minute addition of Seattle to go visit a couple of doctors to learn more about how to treat my disease.

I have to say, after all of it, I definitely feel more empowered and more informed. In a way, it’s very much what I’m used to doing, as a campaigner. So, now I feel like I am fully engaged in my campaign to beat cancer and much more informed.

I like going out there and meeting all the experts, doing the research and being more able to make an informed decision about my treatment.

Beth and I are now back here in San Francisco with a pile of clinical trials. The one that rises to the top, so far, in our investigation is a trial in Oregon. It would be a Phase 1/2 trial so it wouldn’t be randomized or placebo so I’d be guaranteed to get the drugs. Those drugs would be Docetaxel and Prednisone and the clinical trial drug would be Sutent® [sunitinib] which is anti-angiogenic drug that has worked well with kidney cancer and is now being tested on prostate cancer.

Sutent® is a lot like Avastin® because they are both anti-angiogenic drugs which means they slow down or stop the growth of new blood vessels. But Sutent® is more potent and has an additional bonus of trying to stop tumor growth in another way as well. So, that’s a very interesting trial.

Of course, that would mean both of us moving to Portland which we’re in deep discussion about at the moment. We are not going to make any quick decisions, unless it just clearly looks like this is the next step. That decision will probably take place in the next few weeks.

In the meantime, we are headed down to Los Angeles to the PCRI Foundation conference (Prostate Cancer Research Institute) which is holding a one-day conference for people with advanced prostate cancer as well as researchers. We should get more cutting-edge research there, meet some people and talk directly with them about my case.

I also have a fourth opinion scheduled at UCLA with Dr. Allan Pantuck who is a urologist, instead of a urological oncologist which are all the other doctors I have been seeing. He will have a slightly different perspective because he’ll be more focused on the workings of my plumbing and making sure it continues to work after these treatments.

That’s what is coming up.

I want to give a big shout out to my sister Lani who really helped make everything happen very easily in Washington and that really gave us a little bit of a break and which et us enjoy ourselves and go on some hikes and see some good friends and check out some of the beauty in Portland and Seattle. We loved Seattle and want to move there, actually, but we may be headed to Portland, so that’s a big decision.

The other big news is that the Healing the Roots Foundation is almost official now. We received our first donation from Marianne Malov. Thank you Marianne! So this will now provide a place for people to give tax-deductible donations to me.

Also, the Healing the Roots Foundation will hopefully very soon become something larger, and a resource to the community of activists and volunteers who work to protect our environment, human rights, and social justice.

The way I am setting up this organization is that each person or group can be a new project of this organization. [More on this above]”

Transcribed by: cauch


I think I ran out of time doing this voice post so please check the next voice post (above) for more information on Healing the Roots Foundation.

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Comments {7}

Name

(no subject)

from: stillimage
date: Sep. 1st, 2006 08:09 pm (UTC)
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I heard your voice post on Live Journal radio, I almost cried, I want to just hug you, and when you said campaigning and activism you sucked me in, your one of my kind of people.


I wish you the best! Hugs.

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jerumi

(no subject)

from: jerumi
date: Sep. 2nd, 2006 07:03 pm (UTC)
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Thank You :), I appreciate your kind words of support. They encourage me to keep this up.

Jeremy

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Name

(no subject)

from: stillimage
date: Sep. 2nd, 2006 07:08 pm (UTC)
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It's what friends are for even if you don't know your friends yet. :)

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jerumi

(no subject)

from: jerumi
date: Sep. 2nd, 2006 07:46 pm (UTC)
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Well, its nice to make new friends :). I didn't even realize that my voice blog was on LJ radio, but of course that makes sense and I don't mind it. I believe that you are the first person that I do not know that has commented on my blog. Thats a good thing since I now know that its reaching other people as well.

I was checking out your blog too. I can't see as much since it looks like some of it is private but I take it by your LJ name and some entries you are a photographer. I'm also a photographer. I love taking pics..

Nice to chat with you stillimage.

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Name

(no subject)

from: stillimage
date: Sep. 2nd, 2006 07:50 pm (UTC)
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Indeed. Mind if I add you? :) Well, it's a brand new feature, and yours was the only one that really stood out in my mind, and the rest were people of my generation wining about getting grounded or getting caught drinking.

Yeah, I am a perfectionist to some degree so I haven't got around to much. I'm working on it! Most of it is friends only :) I am not really picky about who I add or anything it's just more I am not good at preaching my heart out to people I know who could just read it and judge me. I dunno. Yes, I am a photographer! I love photography!

Nice to chat with you too :)

P.S. http://www.flickr.com/photos/chaparral <-- you can see some pictures there.

May you have a good and safe weekend :)

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jerumi

(no subject)

from: jerumi
date: Sep. 2nd, 2006 07:56 pm (UTC)
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Sure! I'll add you too if you like, although it doesn't make much of a difference since my blog is all public so far. I'll check out those pics.

:)

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Name

(no subject)

from: stillimage
date: Sep. 2nd, 2006 07:57 pm (UTC)
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Well you can read my posts then ;) Alrighty! Heading out to get some food, talk to you later, new friend.

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