?

Log in

No account? Create an account

Voice Post: Investigation Over (for now) = decision time .. G-Vax?

« previous entry | next entry »
Sep. 12th, 2006 | 11:02 pm

VoicePost
960K 5:04
“Boy, it’s been another whirlwind time of research and preparation for the wedding and visiting with folks and all of that. Most of it has been pretty good but some of it has been pretty hard.

After Oregon and Washington, I went down to L.A; actually Beth and I,
after we got back, went down to L.A. We went to the PCRI (Prostate Cancer Research Institute) conference for advanced prostate cancer patients.

The presentations are all great and I certainly learned a substantial amount, but by the end I was pretty depressed because most of the research out there is still very much directed toward early stages of cancer, and not advanced metastatic prostate cancer like I have. That’s pretty sad.

The one thing that really made it great was the people I met – I met some of the organizers and a lot of the researchers and doctors, and they gave me some hope about other interesting treatments down the line.

One that looks really interesting, hopefully I won’t have to do it, but it is happening in other places like Manila and Germany. A combination of cryotherapy where they go in, even if it is metastasized, and they freeze the tumor and they inject it with dendritic cell therapy like Provenge and actually they are having much better results than just doing a Provenge vaccine by injecting this directly into the tumor. So, it’s good to know that’s out there.

I’ve definitely gone round and round in circles. I got a fourth 2nd opinion, or I guess it would be a 3rd second opinion at UCLA with Dr. Allan Pantuck.

Unfortunately, he wasn’t that prepared and he hadn’t read my file in advance, even though I had called ahead and asked him to, and faxed my file about a week in advance. He hadn’t read it, and, you know, I think doctors should do that in advance and there isn’t really an excuse, but the difference was that he wasn’t contacted by another oncologist about my case. I scheduled this with a cold call. Maybe that’s why that happened.

He didn’t really have anything new to say but he did offer the possibility of getting my tumors – sending them down to him - my biopsies to be presented to the tumor board for a second opinion.

More importantly, all of this has educated me and given me some other, important questions to ask my urological oncologist Dr. Ryan at UCSF. Very specific questions and it motivated a lot of good conversation.

He, finally today, after speaking with him and letting him know that I really needed more input about what to decide because the confusion is really intense. Not knowing really what the best treatment is out there and having to make a decision that closes lots of doors to other potential realities that could be life-saving really is difficult to do.

Knowing that there is only one drug, the chemotherapy Docotaxel that is the only FDA-approved drug for metastatic prostate cancer severely limits my options to clinical trials, so closing doors is a risk if I can’t get those drugs.

After a few back and forths, he consulted with Dr. Eric Small, who is world renowned for his research and treatment of prostate cancer at UCSF, and another colleague.

They actually unanimously came up with the recommendation that I start with the G-Vax trial. (continued above)”

Transcribed by: multiple users

Link | Leave a comment |

Comments {0}