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!
Friday, March 12, 2010
My tumor is B RAF positive!
Just heard that my tumor tested positive for the BRAF mutation. This along with my newly clean brain sets my eligibility up to particiapte in clinical trials like those using the new PLX 4032 drug discussed in the New York Times. See my prior posts from late February for the NYTimes series on clinical trials.
My heartfelt thanks go out to Jessica Sweet, Dr. Kaufman's Assistant at Rush. She doggedly pursued securing the crucial 2005 primary tumor block from ENH/Northshore Univ HealthSystem. We are still struggling with the National Cancer Institute. They have not released my 2007 tumor block.
Next kudos goes out to the man himself, fondly known as, Dr. K. He expedited this process and eliminated the need to send my tumor out for testing at the lab in Portland, Oregan. Yes Chicago, Rush is now providing B RAF testing!
I cannot offer you all a better example of why it is important to remain in legal possession of your tumors. Hopefully we will be able to develop more biolabs to do the quality testing that is necessary now with our understanding of the degree that cancer mutates.
My next focus will be getting my tumor(s) tested for the N RAS mutation.
My heartfelt thanks go out to Jessica Sweet, Dr. Kaufman's Assistant at Rush. She doggedly pursued securing the crucial 2005 primary tumor block from ENH/Northshore Univ HealthSystem. We are still struggling with the National Cancer Institute. They have not released my 2007 tumor block.
Next kudos goes out to the man himself, fondly known as, Dr. K. He expedited this process and eliminated the need to send my tumor out for testing at the lab in Portland, Oregan. Yes Chicago, Rush is now providing B RAF testing!
I cannot offer you all a better example of why it is important to remain in legal possession of your tumors. Hopefully we will be able to develop more biolabs to do the quality testing that is necessary now with our understanding of the degree that cancer mutates.
My next focus will be getting my tumor(s) tested for the N RAS mutation.
Brain is Clean!
Just got the MRI results back. Brain is clear of tumors! Still waiting on other scans, however, this is very positive news. Thanks to all of you who have been supporting me and my family since November when we got the rough news. We didn't talk much about the significance of brain cancer ... we didn't have to. I am truly humbled by all of the talent, prayers, and goodwill that made these results possible. It is my hope that you and yours get to start your day in good spirits and great health.
Tuesday, March 9, 2010
Time to take a stand: Tanning Beds are NOT Tongue Depressors!
On March 25, the US Food and Drug Administration (FDA) will meet to discuss the reclassification of tanning beds and lamps.
Currently, tanning machines are Class I Medical Devices, in the same category as elastic bandages and tongue depressors. But according to the US Department of Health and Human Services, UV radiation from either the sun or tanning machines is a proven human carcinogen (cancer-causing agent) and considerable research shows it is the chief cause of skin cancer. Reclassification to Class II or III would permit stricter regulations and more oversight.
Join the fight for reclassification by submitting written testimony about your experience with these dangerous devices. Here’s how:
See below for access to The General and Plastic Surgery Devices Panel of the Medical Devices Advisory Committee; Amendment of Notice under Title. This is the document you want to respond to. On the right side of the screen, click Submit Comment.
http://www.regulations.gov/search/Regs/home.html#documentDetail?R=0900006480a7b383
Your testimony has the potential to help save lives. Please submit your comments by March 19.
Learn more about Regulations.gov at:
http://www.regulations.gov/search/Regs/home.html#home
Currently, tanning machines are Class I Medical Devices, in the same category as elastic bandages and tongue depressors. But according to the US Department of Health and Human Services, UV radiation from either the sun or tanning machines is a proven human carcinogen (cancer-causing agent) and considerable research shows it is the chief cause of skin cancer. Reclassification to Class II or III would permit stricter regulations and more oversight.
Join the fight for reclassification by submitting written testimony about your experience with these dangerous devices. Here’s how:
See below for access to The General and Plastic Surgery Devices Panel of the Medical Devices Advisory Committee; Amendment of Notice under Title. This is the document you want to respond to. On the right side of the screen, click Submit Comment.
http://www.regulations.gov/search/Regs/home.html#documentDetail?R=0900006480a7b383
Your testimony has the potential to help save lives. Please submit your comments by March 19.
Learn more about Regulations.gov at:
http://www.regulations.gov/search/Regs/home.html#home
Monday, March 8, 2010
1st SOS SUN SAFE CHALLENGE: Ms. Lessard's vs Mr. Damseaux's Class
To all you great students following the Skin of Steel blog go many heartfelt thanks! Such wonderful words of encouragement and hope. I am humbled and amazed at the attention you have bestowed on the Skin of Steel blog.
Now however, I must lay down the challenge. Student attention is just not going to cut it. I actually need more from you. I would like to see which class can be fully sun safe first. Sun safe means that every student AND teacher carries sun screen on their person daily, USES it, and tracks daily usage. Sun safe means that every student has the coolest hat of the season, WEARS it outside, and tracks daily usage. Google Eugenia Kim & Target. Sun safe means that each of you figure out how to have a baseline body scan/ skin screening done. Check around bkz May is Melanoma month and there will be free scans/screenings at hospitals and through dermatology offices. Sun safe means you convince one or more other person to make one of these personal changes too. Game on. Winner gets free pizza courtesy of your teacher!
http://www.aad.org/public/exams/screenings/
Now however, I must lay down the challenge. Student attention is just not going to cut it. I actually need more from you. I would like to see which class can be fully sun safe first. Sun safe means that every student AND teacher carries sun screen on their person daily, USES it, and tracks daily usage. Sun safe means that every student has the coolest hat of the season, WEARS it outside, and tracks daily usage. Google Eugenia Kim & Target. Sun safe means that each of you figure out how to have a baseline body scan/ skin screening done. Check around bkz May is Melanoma month and there will be free scans/screenings at hospitals and through dermatology offices. Sun safe means you convince one or more other person to make one of these personal changes too. Game on. Winner gets free pizza courtesy of your teacher!
http://www.aad.org/public/exams/screenings/
Wednesday, March 3, 2010
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