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Joe
07-16-2004, 05:55 AM
WOW!! Talk about timing.
The bc researchers have taken notice of our web site and we are currently in negotiations with a medical center and drug research group to provide information to our members about ongoing and future clinical trials.

In order not to clutter up our home page, we will soon be adding an additional section to our web site dealing with new technologies. Our intent is to provide a brief description of an investigational drug and provide a link to the clinical trial testing that drug.

On July 1st, Christine and I were both fortunate to see Dr. Slamon speak at the opening of the San Diego Cancer Center in Encinitas. His first words were "Christine, I have heard so much about you and looked forward to meeting you." Which has made my life unbearable since. He also said that he has visited our web site and was impressed with its quality.

Another speaker, whose name escapes me, envisioned
the way medical students will be taught about breast cancer in 50 years. He felt that with new advances in genome research and bioscience as well as with drugs in development, that in 2054 breast cancer will be lumped together with polio, small pox and diabetes as diseases which were once out of control but now kept in check.

Hopefully, before then we can change from being an educational and support group to an internet web site where former bc patients meet to exchange stories about the "Old Days".

Warmest Regards To ALL
Christine and Joe

lindaw
07-16-2004, 01:52 PM
Dear Joe

I wanted to share with you nhow this site has helped me. It was through a thread on the drug Lapatinab ( GW ......) that I inquired if it was available in trial in Australia and I think it was Andrea York who replied along with others about where in Australia it was, It was in Sydney, Adelaid and somewhere else. However I am in a regioal area.I rang the Sydney hospital and spoke to the nurse and she asked me lots of questions and said I sounded right for it. I told my onc and he contacted them as he thought they may support me with transport costs. ( 6 hour train trip).When he contacted them they had already recruited enough and I was not quite suitable as my tumour was not measurable ( I get spots on the scar line only and have non at the moment). To cut a long story short they offerred our region 2 other trials combining Lapatinab with Xeloda and another drug. It was going to the ethics commitee the week I left orI think it may have passes so it is available for women in our region. It would not have been but for the information from this site.

Thanks heaps

love
lindaw

joy
07-17-2004, 01:53 AM
The kudos are well desreved! I'm so excited about the trials information. Thank you for everything!
LOVE, LOVE, LOVE joy

Lolly
07-17-2004, 02:18 PM
Thank ou both for all you do, every day, for all of us. You are truly life savers. I await the inception of the new page with great anticipation!
Love, Lolly