Chrisy - questions about Tykerb/Avastin trial

VirginiaGirl · 04-20-2007, 06:26 PM

How did you get in it so quickly? I want to try this combo, my (community-based) onc said last week he'd look into it for me, but so far no word from him. In fact, for the past 5 weeks or so he's been supposedly looking into clinical trial options for me and has come up with very little. I faxed him info on the Herceptin/Tykerb trial, even though I don't appear to be eligible for it. I know he's really busy, and I've been happy with him so far, but I'm starting to get pissed off. I'm wondering if he even knows what to do. He says his goal is to find a med that will keep me stable and avoid chemo meds until I really need them. Do you have any advice or resource info on Tykerb/Avastin vs. the Tykerb/Xeloda. Thanks so much!

chrisy · 04-22-2007, 12:51 PM

to have had the researcher at one of the 2 centers running this trial as my "2nd opinion" doctor! When I stepped onto the recurrence roller coaster, I sent her an email and specifically asked if there were any trials appropriate; she had just started this one in December and had actually mentioned it to me on my previous visit in January. With my background she felt this (Tykerb/Avastin) trial would be a good opportunity for me.

In another bit of serendipity, I actually had an appointment set up with her later that week that they had scheduled back in January but not told me about! So it all happend so quickly by things miraculously falling into place.

The key for me, in this case, was having direct access to the research doctor.

However, I also regularly search for trials which sound promising for me "if and when" something happens. The info for these always has the contact number for the trial researcher - and if you are interested in a specific trial, I think you would get a response by contacting this person. After all, it is their job and their goal to get people into these trials. In the past I have brought these to my regular oncologist to get his impression if this would/would not be appropriate for me first. So you could "help" your oncologist find trials that would be good, then have him/her "help" you make the contact.

For the Tykerb/Avastin trial, I think it is only at UCSF and MSK in New York. There are lots of other trials with Tykerb, though and the easiest way I've found to locat them specifically is through the GSK search from the Her2support website! I go there from the main page/index/clinical trials. You can also get into the NHI clinical trials site from there. Here is the link to the NIH trials for Tykerb:

http://www.clinicaltrials.gov/ct/sea...inib%2C+breast

Good luck with locating a trial that suits you - your community onc actually has the same philosophy as my rockstar 2nd opinion onc - work through targeted therapies and minimize the "chemo" as much as you can. This lets you stay healthy for the fight! Keep on him, he probably has his hands full and you want to stay on the top of his "to do" list!

Much love
Chris

VirginiaGirl · 04-24-2007, 05:55 PM

Chrisy - Thanks for your response, it really does sound like you were meant to be in this trial! I left another message for my onc today as no one had responded to my previous message from last week. If I don't hear from him tomorrow, I plan to go up to his office and wait there until I can see him! Thanks again!

chrisy · 04-25-2007, 05:46 PM

I actually started the trial yesterday. I asked the trial coordinator how many people were in the trial at UCSF. She said "you're the 6th" Then she went on to say that they are actually only approved for 6 - but they are going for permission to go up to 15. So yes, I think this might be exactly where I'm supposed to be...

The trial info said there were going to be a larger number of study participants - over 100. So if UCSF was only going to have 6, maybe they will be opening more trial locations besides MSK and UCSF.