Where in the World is Susan Steel?

Sorry folks I have been so busy trying to convince people to step up and address Melanoma properly.  Also preparing for the first ever Educational Outreach on Skin Cancer Prevention at the LA Free Clinic for 8,400 under and uninsured.  Just secured all ed materials, sunscreen and still struggling with getting protective clothing and hats.  We're bringing 8 Chicagoans out to run this with some Californians.  Join our Facebook page (Skin of Steel...what else) for the current goings on.  Also see ramfreeclinic.org

Just got the retired COB of Northwestern Memorial and Healthcare to join SOS Board of Advisors, which we are thrilled about bkz he seems like a great guy and has extensive experience in healthcare, biopharma, etc.,.  He is bringing my doc (Dr. kaufman from Rush) and me to the BIO International Conf so I can start understanding and meeting Pharma and Dr. K can push his strategic vision.

Did you see the following in terms of the potential for translational research?

http://www.whitehouse.gov/administration/eop/ostp/grand-challenges-request-information

At least collaborative effort is on the table...it may not get off the table for awhile but at least it is on the table.

OK now for me as a patient...you see how I keep my mind distracted.  As you know I failed to get on to the Ipi Expanded Use Phase III trial.  Chicago Internal Review Boards at key institutions were at least two weeks out and supply issues are still present. I chose not to travel this time, as the last time it took such a toll on the kids.

So I had to make a strategic decision as tumors were being nasty.  Chose a chemo cocktail (Carboplatin & Taxol) with a braf inhibitor chaser (Nexavar).  Chemo took my hair again and braf may have burnt my feet and numbed my fingers BUT combo also greatly reduced tumors.  We just reduced the Nexavar in hopes of keeping neuropathy from becoming permanent.  I was supposed to start second round of chemo this past Monday but wbc and plates tanked.  I just took another blood test this am to see if I can start second round tomorrow.  I will get scans after second round and then we will decide on third.  In the meantime, I am scheduled with Lutheran General's Dr. Hellmeyer to meet doc with IRB approval for Ipi drug, should scans not be good.  HOWEVER, Dr. Kaufman may have access to another drug like Ipi, testing with same results but no side effects.  The lesson Ipi has taught me is that this is all speculative until the drug is in my mouth or running in my veins.  That said, the universe clearly has enough work for me these days.

We are looking so forward to holding the upcoming Brainstorm in Glenview, IL at the new Youth Services facility on how to protect our village from Skin Cancer.  REI is joining our new SOS Tent (from the makers of the tents at the Olympics) as are artist Elisa Boughner with her Steel Lotus Collection and new Lotus Gems (see Boughner Art on FB),  and Dr. Brian Dembo with the latest in Sun Protective Eyewear.  We hit the 100+ mark yesterday for accepted invitation and now face a potential max capacity challenge.  I wont' be able to hug attendees but will be sending them huge hugs through my eyes and off my bald head.

Lastly, my heartfelt thanks to all of my friends and their friends for their follow up concern regarding my treatment.  I am struck and touched.  Pls let everyone know that I feel fantastic. Equally important, tell them that I am doing everything in my power to develop comprehensive Melanoma treatment and research in Chicago.  A city of this caliber has great Midwestern common sense, a phenomenal international transportation hub, and the potential to find controls for this disease just as much as any other city in the world. Given that we still depend on one 35 year old FDA approved drug with an 11% response rate, it seems like there is plenty of need for new R&D participants of a translational nature, similar to what Dr. Agus of USC proposed and finally got funded for from NIH.

A movement is afoot so pls watch us grow at:

SkinofSteel.org  (catch Elisa's daily Lotus Gems for sale to start our fund raising)
Face Book Page: Skin of Steel

PS.  True to form Karen Hirsch knocked the ball out of the field and secured our 501c3 status with the IRS in 2 WEEKS flat.  Normal processing and review is taking the IRS 3-6 months!  Enlightened intervention?