ASCO - Report of Activities

[Joe]

The HER2 Support Group has completed our first appearance at the prestigious ASCO meeting in Atlanta and wish to report that it was a very successful endeavor.

Here are some, but not all, of our accomplishments:

Met with representatives of GSK and Genentech. We presented them with our future plans and projects. That have promised to support us as much as possible. Our group had been in contact with GSK in order to make their new drug Tykerb available for compassionate use. They have announced that they will launch their program on June 12th. GSK will also apply to the FDA for approval of Tykerb shortly. The FDA has already fast tracked the application, so we are expecting approval around the end of 2006.
For those who are unfamiliar with this new drug, it is a dual kinase inhibitor intended to treat those patients who do not respond to Herceptin. GSK will also apply to the FDA to conduct adjuvant trials of Tykerb shortly.

We have also approached GSK to assist us in presenting our first teleconference program. It will be titled "Tykerb, Is it right for me?"
We hope that GSK will provide an oncologist to describe the drug and then open the venue for a Q & A session.

Genentech presented us with their SPOC program which is designed to provide their major cancer drugs for free or at a reduced cost to those who cannot afford it or whose insurance companies refuse to pay for them.

Our group was also invited to provide a speaker for a Bayer/Oncogene Science press conference to speak about our organization and its impact among breast cancer patients.

We also met with Nexcura and we will be hosting their Patient Profiler program on our website. This program matches patients with available clinical trials and notifies them about new trials as soon as they are announced.

During the event, our group distributed an awareness paper about CNS tumors designed to educate the clinical oncologist and patient about the detection and treatment of metastatic brain tumors. It was well received and initiated much dialogue among the healthcare professionals. I have attached a copy of this paper.

It is now apparent that we are a major (and the only) breast cancer advocacy group representing patients who overexpress the HER2/neu gene. We will now begin our transition from our "mom and pop" status to becoming a major professional organization.

Our future plans will depend on a major influx of funds. Please let us know of any grant providers who would be interested in supporting our organization and we will contact them. Many pharmaceutical companies are making a major effort to develop drugs and tests to diagnose and treat the women that we represent. Our group is a valuable tool to help them develop their products.

Dr. Devon Webster of the University of Washington Vaccine Study Group stopped by our exhibit during ASCO. She currently has 20 candidates enrolled in her phase I clinical trial of a cancer vaccine for women who are HER2 positive. 10 of these candidates were enrolled through our website. This is a major accomplishment.

Hugs
Christine

[Montana]

Congratulations on your many accomplishments at ASCO!

Sue

[michele u]

God has blessed us all with this website. It has saved lives. I'm glad to hear we are now becoming a leader in the cancer society. Good job Joe and Christine

[tammymarie1971]

We are so blessed to have you guys fighting on our behalf!!!
Thank you so very much!!
Tammy

[Viczen]

Hi Joe and Christine,

You are on the ball and I want to thank you for condensing a very busy week of information that I know, first-hand, comprised long and busy days.

When I got home, I immediately went to Palm Desert to celebrate my nephew's graduation from high school and my twin sister's and my birthday. Inside my birthday present from my parents, was an article on Tykerb. I think WE ARE ALL HAPPY AND ECSTATIC that there are new drugs down the pike and Joe and Christine, you are "paving that road" for all of us, too, with your Her2 advocacy!

I am so excited to hear about the Patient Profiler program you mentioned and I sure want to be a part of it. There was so much information going on, I didn't even know about that. Thank you both for a great trip. I learned a lot and loved meeting the women from our site. They are a wonderful, educated and compassionate group of women and I'm grateful I had a chance to spend some wonderful days with them.

Vicki Z.

From Joe and Christine's posting: We also met with Nexcura and we will be hosting their Patient Profiler program on our website. This program matches patients with available clinical trials and notifies them about new trials as soon as they are announced.

[Carol.hope]

Christine, Thank you so much for doing all this, and for reporting to us. What a wonderful thing you have accomplished.

Do you know if Tykerb might be an option for people who got heart failure from Herceptin?

Last year I did a fund-raising campaign to all my friends and relatives, asking them to contribute to the U of W Tumor Vaccine Group (after hearing a presentation by Dr. Devon Webster). I was able to give them over $2000. If 100 of us did that for Her2support, that would be $200,000. Would that help? I asked people to send me their checks so I could send them all in together, but gave them the address so they could send it separately if they preferred. A few did. I also asked them to send the request on, and my sister's friends really came through.

I love hearing the latest from you guys. Thank you, thank you! - Carol

[Joe]

Carol,

I heard that Tykerb has less cardiotoxicity than Herceptin. You may wish to call them and find out.

Regards
Joe

[MCS]

I, for one, would be out in the cold without this web site.

You're my held hand for information and support.

thank you for representing us and bringing up the issues.

great job Joe and the participants

MCS (maria)

[kat in the delta]

Where is that NEXCURER Patient profiler we can use ? thanks,,,,kat

[Joe]

It's the fourth thread from the top on this forum.

Regards
Joe

[rinaina]

My heartfelt thanks to you both for all the incredible work, hours you have put in and dedication to this forum. I along with everyone else is so fortunate to have found this support forum and how far it has come in the short time I am a member. All the future plans sound great and encouraging. Hats off to you for representing all us Her2+ breast cancer patients and for caring as much as you do. I truly appreciate all of your efforts.

[Karen t]

Although it may seem that we sometimes take for granted everything that you do, nothing could be further from the truth. Some days I feel like my survival is tied to this site so a big THANK YOU for all that you do. I gave a talk about my bc yesterday at a Women's Forum and someone in the audience raised her hand and wanted to know what website I mentioned that I rely on. My reply was that it really focuses on Her 2 bc; she said her sister mentioned just starting on Herceptin so it sounds like what I have! It gave me great pleasure to alert another person to your site. Again, THANKS!

[Liz J.]

No words can express all you have done for us. Thank you doesn't seem enough. Just know it is from the bottom of the heart.

Sincerely,

Liz J.

[Carolyns]

Thank you so much. You are making a huge impact!

Carolyn

[tousled1]

Joe and Christine,

I have never thought of this site as a "mom and pop" operation. But I guess it's a good feeling to be hitting the big time. You both deserve to be recognized for all the hard work and effort that you put into making this website what it is. Without this site us HER2ers would know where to turn. Thanks for all you do.

[Ginagce]

Geez Louize...I never thought of this site as a Mom & Pop operation...as a matter of fact, in all my travels on the internet, I have found this site to be the most organized, educational and influential site I have ever been on.

Thank you for what you do. I will be happy to work to support any and all new projects.

Ginagce