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.
Thursday, March 25, 2010
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
Wednesday, March 17, 2010
Dr. Kaufman and Susan to be interviewed on CBS News
Dr. Kaufman, Rush University Medical Center's Director of Cancer Programs (and my doc!), and I will be interviewed by CBS News Chicago (channel 2) on Dr. Kaufman's work with new Melanoma vaccines and Susan's experience as a 5 year survivor of Melanoma. We hope to emphasize the importance of funding new research lines, developing a comprehensive approach to treatment and research, and provoking change in how people and institutions respond to Melanoma.
The broadcast should air on Wednesday, March 17th at 5, 6, and 10pm.
You can watch the broadcast afterward online at:
http://cbs2chicago.com/local
Who knew we could start to drive the public health agenda in this direction so quickly? Clearly all of your good thoughts and prayers are having an effect. Many thanks to all of you for your support. I view this as a team win for all of us!
Subscribe to:
Posts (Atom)
