Monday, May 3, 2010
Thursday, April 15, 2010
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?
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?
Thursday, March 25, 2010
Who knew our Email Network reached so far?
An amazing chain of events occurred last week that I am still processing. As you know I was not able to get Ipilimumab for my latest treatment. For those of you who don't know, Ipilumumab is an antibody that activates the body's immune system to fight melanoma by inhibiting the cytotoxic T lymphocyte-associated antigen 4 (CTLA-4) molecule. CTLA-4 is a molecule on T-cells, a type of white blood cell that plays a critical role in regulating natural immune responses. The presence of CTLA-4 suppresses the immune system's response to disease, so blocking its activity stimulates the immune system to fight the melanoma. I am hoping that after taking a Chemo Cocktail and Braf Inhibitor this month, the "Ipi" drug as it is called, will be through Internal Review Boards and available in Chicago.
So why am I amazed. Simply put because of YOU. For the first time in five years of fighting Melanoma, I was told I could not get access to the optimal treatment choice for my current situation. My response was to ask for help. You have no idea how many of you and your friends and associates rallied for my cause. We're talking hundreds of contacts made. I am still blown away by the magnitude of what you all tried to do for me last week. If anyone doubts that we are a "capable" people, they should be blessed with what I witnessed. Calls, emails, direct conversations circled the bloody globe last week in search of Ipilimumab. Bristol-Myers Squibb was contacted up and down their organizational chart. YOU all put this into action and I am truly humbled.
Please know that I hold no ill will toward BMS or the FDA. I understand how Internal Review Boards work. I understand how new manufacturing protocols must be approved. I also know a lot of Melanoma patients need this drug and that I would never want to displace someone already in line. Rather than dwell on what was not available, my sights are on encouraging BMS and the FDA to drive hard on the due diligence necessary to find out if Ipilimumab is a viable control for Melanoma. There is no time for finger pointing. People's lives are on the line and I for one intend on seeing my son graduate from high school on June 6th. Two days ago marked my fifth year living with this disease.
In gratitude to everyone who rallied on my behalf, I send out a wish of good health to all.
So why am I amazed. Simply put because of YOU. For the first time in five years of fighting Melanoma, I was told I could not get access to the optimal treatment choice for my current situation. My response was to ask for help. You have no idea how many of you and your friends and associates rallied for my cause. We're talking hundreds of contacts made. I am still blown away by the magnitude of what you all tried to do for me last week. If anyone doubts that we are a "capable" people, they should be blessed with what I witnessed. Calls, emails, direct conversations circled the bloody globe last week in search of Ipilimumab. Bristol-Myers Squibb was contacted up and down their organizational chart. YOU all put this into action and I am truly humbled.
Please know that I hold no ill will toward BMS or the FDA. I understand how Internal Review Boards work. I understand how new manufacturing protocols must be approved. I also know a lot of Melanoma patients need this drug and that I would never want to displace someone already in line. Rather than dwell on what was not available, my sights are on encouraging BMS and the FDA to drive hard on the due diligence necessary to find out if Ipilimumab is a viable control for Melanoma. There is no time for finger pointing. People's lives are on the line and I for one intend on seeing my son graduate from high school on June 6th. Two days ago marked my fifth year living with this disease.
In gratitude to everyone who rallied on my behalf, I send out a wish of good health to all.
Wednesday, March 24, 2010
Treatment Update
Just wanted to update you on my current treatment plan. While my brain is clear, tumors in my liver and spleen have grown and multiplied. Due to my 22 1/2 months using a chemo called Temodar, I am ineligible for PLX 4032, I qualified for the expanded use of Ipilimumab, however, it was not clear that sites would be finished with their Internal Review Board approvals in time, Hence, Dr. Kaufman and I have opted to use a chemo cocktail with a Braf mutation inhibitor for the next three weeks. We will then reevaluate and either switch to Ipilimumab or continue with a second round of the chemo cocktail and Braf inhibitor. Thus far, I am tolerating the treatment relatively well. There is some fatigue but I continue to make plans for Chris' graduation, pick up Sachi from soccer practice, and developing the not for profit Skin of Steel organization.
Dr. Kaufman & Susan Steel interviewed on WGN Chicago News: Melanoma Oconovex Vaccine
See WGN-TV's interview, transcripts and link to skinofsteel.org
Melanoma Vaccine Trial at Rush University Medical Center
Melanoma Vaccine Trial at Rush University Medical Center
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