Thursday, May 6, 2010

Update on all of our Skin of Steel Activities

Hi Folks,
It has been whirlwind recently in terms of our launch of Skin of Steel, collaborative work with Rush, Christopher's admittance into all 5 of his colleges, Sachi taking a lead role on the SOS Board, Mas keeping us all a float financially, Grandma Joan flying in at the last minute so as not to miss the Brainstorm...and me continuing with the chemo combo and braf inhibitor treatment.

SOS now has a professional identity courtesy of Kurt Meinecke and Barb Lynk of Group Chicago.  Be sure to check us out online at skinofsteel.org as well as on Facebook.  We have a logo suitable for multiple audiences.  We also have a fabulous new SOS Shade & Awareness Tent and a 16 foot wide double sided banner that is available for Health Fairs, Recreational Events, Corporate Wellness Programs, etc.,.


We held our first Brainstorm at Youth Services new facility hoping we could get 50 invitees to show up and 150 showed up.  We now have a database of 383 individuals and our website has over 1,000 hits.  Hard to believe we started this only 3 months ago.  


The Brainstorm generated incredible interest that we are corralling into feasible strategies for sun safety awareness, prevention training, early detection, comprehensive treatment, institutional coalitions, corporate relations, and government advocacy.  My hats off to Glenbrook South High School Prinicipal, Brian Wegley for taking the plunge and declaring academic year 2010-11 to be dedicated to sun safety.  13 GBS students led our Brainstorm breakout sessions, while another 6 started working on a baseline survey of student sun practices and use of tanning salons with our SOS Advisor and Northwestern Medical School Professor, June Robinson.  Interestingly, word got out very fast.  Within a week, seven area high schools inquired as to how they could get "sun safety training that would really speak to their high school students".


It is this latter comment that keeps me up at night thinking how to make sun safety as common place as putting on a seat belt or refraining from smoking.  The goal is clear but we haven't come up with the right message yet.  Some believe the only way is through fear...others disagree.  Clearly we need to try harder.  We are looking carefully at how to identify the right spokesperson.


Right on the heels of the Brainstorm, I took our first SOS Outreach Team of Karen Hirsch, Jodi Shannahan, Sharon Mann, Liz Garvey, Debbie Hepburn, and Marie Fischl, to the Los Angeles Free Clinic run by Remote Area Medical.  We provided outreach for 8,400 over 7 days at the LA Sports Arena. Our team was assisted by medical and undergrad students from UC Irvine's Spot a Spot program.  We referred over 500 patients for follow up with dermatologists.  While educating, we distributed 8,400 Aveeno sunscreen samples to construction workers, boom operators, poets, teachers, photographers, real estate agents, small business owners, young children, teens, and people of all colors.  Maria Shriver visited our SOS exhibit and we were invited to attend her upcoming Women's Conference. We were interviewed by a variety of outlets including AP International and the Japanese Business Journal "Frontline".  But mostly we were humbled by the patients' intelligence, humility, and willingness to learn.  The lack of both skin cancer outreach and skin clinics in California, the state with the highest melanoma death rates, suggests that other states are probably in a similar situation.  


Consequently, while we were out there, SOS started building a local consortium comprised of the LA County Supervisor Ridely-Thomas' Health Care Policy Coordinator, Dermatologists from USC, Cedars Sinai, UCLA, Kaiser, a Management Consultant affiliated with the Taproot organization, a Melanoma survivor and a possible corporate foundation devoted to safety clinics.  We believe that this was the intent of RAM in terms of the evolution of people like you and me identifying our own public solutions to health care rather than waiting.


Next week I turn my attention to consortium building on the homefront. Dr. Kaufman and I continue to speak out on the benefits of collaboration on a Chicago-wide basis.  It seems we now have interest from Northwestern, Univ of IL-Chicago, Loyola, and Lutheran General.  After attending the BIO Int'l Conference on Monday, at the bequest of SOS Advisor Ray Drymalksi, I have also initiated contact with eleven pharmaceutical, biomed foundation, and government entities that are interested in our efforts.  What was perhaps most interesting observation from the conference, is the number of pharma subsidiaries coming out with Melanoma diagnostic tools.  Maybe the facts, that skin cancer is the fastest growing cancer and Melanoma is taking one life an hour, are now registering with the pharma market.


On a final note, it is with so much joy that I get to announce that our son Chris will be headed to Pitzer College next year in Claremont, CA.  Pitzer is part of the Claremont Consortium of 7 schools.  It is known for independently designed programs, social responsibility and global citizenship.  Chris will be able to take courses at Pomona, Claremont McKenna, Scripps, and Harvey Mudd.  His current major of Asian Studies and the Japanese Program is run out of Pomona, so he will spend a lot of time there.  Masuo, Sachi and I are proud of Chris' accomplishment thus far and are excited about what he contributes to the world in the future.

Skin of Steel's First Brainstorm on Skin Cancer

See our Story through Chicago Tribune

Monday, May 3, 2010

BIO Int'l Conf Key Monday Sessions on Clinical Trials & Research

2010 BIO Conference - Monday

I will attend this conference on Tuesday, May 3, 2010 in search of more strategic partners for Skin of Steel and its mission to provoke change in how individuals and institutions respond to Melanoma.
See the Conference's key Monday Sessions below.
bio_conf-logo

2:30 PM - Making Clinical Trials Faster, Better, Cheaper, Stronger
If a patient were sitting in the morning session of the Translational Research Forum, they might wonder what all the discussion of funding and private/public partnerships and basic science vs. applied science meant for them. For someone with an untreatable disease, the primary goal is getting a new cure, as soon as possible. Unfortunately, the slow pace of the clinical trial process is only outdone by its expense - as much as $500-800 million to test each drug or treatment before it is officially approved and brought to market.
The afternoon session, “From Invention to Bedside,” examined different means of streamlining this process so that promising scientific innovations are brought to the patients that need them more quickly. The real, human stakes are high - Julian Solway, director of the University of Chicago Clinical and Translational Science Award, spoke about the elevated rates of infant mortality and chronic disease such as heart failure and diabetes in the South Side Chicago community the Medical Center serves. How can the discoveries of the University of Chicago laboratories be brought quickly and efficiently to the neighborhoods surrounding campus?
One answer came from the other side of town: Lewis Smith, associate vice president for research at Northwestern University, who spoke about removing inefficient processes from the many, many clerical and application steps involved in clinical trials. Another option was suggested by Margaret Anderson, executive director of FasterCures, a non-profit organization that helps facilitate what she called “venture philanthropy.” Modeled by disease-specific advocacy groups such as the Cystic Fibrosis Foundation or the Michael J. Fox Foundation for Parkinson’s Research, the philosophy calls for a different attitude about investigating potential cures, one that prioritizes the patient.
“The bottom line is curing disease and producing treatments,” Anderson said. “Traditional measures [such as publications and shareholder value] are not what they care about.”
Anderson said these foundations are learning that the challenges faced in getting new treatments to market are often not disease-specific, but system-wide. Through collaborations like TRAIN, the groups are looking for new ways to motivate scientists and regulators to move more efficiently in clinical research and approval, in order to receive grants from the millions of dollars the groups have raised through events such as charity walks.
“Every dollar they are putting out is a dollar they had to raise,” Anderson said. “When you are walking for every dollar, you’re going to care deeply about where every dollar gets spent.”
12:30 PM - Speaking Different Languages: Academic/Industry Partnerships for Better Drugs and Treatments
(RM) While Rep. Dan Lipinski’s talk at the Translational Research Forum spoke of boom times for research funding, Stephen Kent, a professor of Biochemistry and Molecular Biology at the University of Chicago, added a healthy dose of skepticism to the proceedings in the day’s first panel. Kent pointed out that roughly 15 percent of the U.S. GDP is spent on health care, amounting to trillions of dollars, making the $32 billion wielded by the NIH appear to be the proverbial drop in a bucket.
“I think the amount of research investment is actually way too small,” Kent said. “We’re under-investing all over the place.”
Kent’s comments came as part of a panel called “From Science to Invention,” featuring speakers from the University of Illinois-Chicago, the Illinois Institute of Technology, and the pharmaceutical company Pfizer. Much of the discussion hinged on how scientists can turn a promising discovery in the lab into a patentable invention that can be brought - and sold - to the general public. In times such as these, where private biotech companies have decreased their research spending, facilitating science’s jump from campus to clinic is more important than ever.
Everyone agreed that an obvious solution was more private/public partnerships between pharmaceutical companies and research institutions. But proposing such a collaboration is one thing, and executing it is another. Kent pointed to the importance of a free exchange of information in developing new drugs; an openness that is often walled off by patents and trade secrets of private companies. Private funding for research taking place at academic centers exists, but has often run into ethical and administrative barriers. Meanwhile, an increased focus on directed research that focuses on one specific disease or problem has hurt funding for basic science - less immediately applicable research that often leads to unexpected breakthroughs. Finally, scientists must learn to better explain realistic goals to the public, said David McCormick, director of the IIT Research Institute, citing the field’s tendency to “overpromise and undercommunicate.”
11:30 AM - Report: Biotech Thrived as Economy Wobbled
(KM) The big announcement of the BIO convention’s first morning was the release of the Battelle Report, a snapshot of the state of the biotechnology industry. The report highlighted growth in the industry, reporting that 19,000 jobs were added between 2007 and 2008 despite the world’s financial struggles of the past few years.
Matt Summy, president of the Illinois Science and Technology Coalition, spoke to the benefits of the Battelle Report for use as a resource to their own organizations.  Summy works in conjunction with Illinois’ state government and economic development to move state initiatives forward, and he pointed out some of the highlights of the report relevant to his efforts.  For example, the data show that there is strong leadership in both large metropolitan areas in the Midwest (e.g., Chicago and Minneapolis), and in smaller areas as well (e.g., Decatur, IL and Cleveland, TN).  The data also offered opportunites for convergence, such as using the supercomputing capabilities of the University of Illinois to move genomic research forward.  Finally, the data showed that the midwest has opportunities for investment, for a supportive environment for entrepreneurs, and for high levels of innovation.
Vicki Loise heads the Association for University Technology Managers (AUTM), whose mission is to disseminate information for the public good.  One of the main vehicles for doing this is by patenting, which Vicki stated was different from, but just as important as scientific publications.  The data from the Battelle report is important for AUTM in that it helped to show the steady increases in new companies formed from university research.
Finally, Mitch Horowitz, who is the VP of the Battelle Technology Practice, spoke about the data collected in the report.  Battelle primary used figures through 2008 to track trends in bioscience employment, assess the financial performance of the bioscience sector, examine state-level indicators of the recent performance of the bioscience sector, and describe trends in state policies and programs.  The report first defined the bioscience sector as consisting mainly of 1) agricultural, feedstock and chemical 2) drugs and pharmaceutical 3) medical devices and equipment and 4) research, testing, and medical laboratories.  Some of the reports key findings were:
- Bioscience employment growth, led by research, testing, and medical labs, outpaced national employment growth from 2001 - 2008.
- All sectors, except drugs and pharma grew between 2007 - 2008
- The total employment impact of the bioscience sector led to 8 million jobs
- The bioscience sector continues to be a source of high-wage jobs
- Bioscience employment is widely distributed with 39 states having a specialiation in at least one bioscience sector
- States continue to invest in bioscience development, despite state fiscal challenges
- Based on an analysis of 649 biosci companies (2009), each of the 4 sectors were profitable
- One key warning sign of decline was that venture capital to the bioscience companies fell 36.7% between 2008
Although Mitch emphasized the positive trends in the industry, he cautioned that the continued growth is not guaranteed, mostly because of challenges at the state level, at the level of NIH funding, with the amount of venture capital available, and with the quality of science and math education at the K-12 levels.  However, he concluded that state and national policymakers have the ability to ensure that these challenges are addressed in order to allow the US to continue to be a world leader in biosciences.
10:00 AM - Making the Case for Research Funding
(RM) The slogan of the BIO convention - “Heal, Fuel, Feed the World” - describes the major global problems that biotechnology hopes to solve. But in the near term, a place where biotechnology can have a practical effect is on a less romantic, but equally concerning problem: jobs. With politicians promising to place job creation at the top of their to-do list in the coming months, it’s important to remember that a powerful indirect stimulus for lowering unemployment is the funding of research institutions such as the National Institutes of Health and the National Science Foundation.
Those organizations received a huge boost from the American Recovery and Reinvestment Act, otherwise known as the stimulus bill, in 2009. But U.S. Rep. Dan Lipinski, in his remarks to kick off the Translational Research Forum Monday, emphasized that Washington remains committed to increasing those funds and investing in science as a way to create new industries and jobs. With the NSF Reauthorization Bill he has drafted, Lipinski - who himself once received an NSF grant as a chemical engineering student - said he hopes to increase funding for the agency to $11 billion by 2015, while the Obama administration has pledged to double the NIH budget in a similar timeframe.
“There’s no question that this administration and Congress have stepped forward and shown real commitment to science and technology,” Lipinski said.
But scientists and research institutions can’t waste time celebrating these spikes of funding after years of flat budgets, Lipinski said. The case must be made to the public that scientific funding is essential for new discoveries that bolster the American economy and improve quality of life, he said. Improvements in STEM education - science, technology, engineering, and mathematics - must be made so that the U.S. can remain competitive with new research rivals such as China. And “research clusters,” such as the one made up of the universities and national laboratories in the Chicago area, must be nurtured and encouraged by federal funding.
“There’s no better place for scientific and medical frontiers to interact with biotechnology,” Lipinski said. “When you have talent in close proximity, that creates jobs.”

American Academy of Dermatology 2010 'Suntelligence: How Sun Smart is Your City?' Fact Sheet

American Academy of Dermatology 2010 'Suntelligence: How Sun Smart is Your City?' Fact Sheet

Medical News: 'Suntelligence' Score Low, Survey Finds - in Dermatology, Skin Cancer from MedPage Today

Medical News: 'Suntelligence' Score Low, Survey Finds - in Dermatology, Skin Cancer from MedPage Today

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?

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.







2009 Sunscreen Guide published by Environmental Working Group

2009 Sunscreen Guide - Find your Sunscreen - Page 1 of Results | Environmental Working Group

Posted using ShareThis

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

Neutrogena Encourages Americans to Re-evaluate Sun Protection Habits: Company Responds to Study Noting Non-melanoma Skin Cancer Reaches US Epidemic

http://www.jnj.com/connect/news/all/20090324_090000

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

Going Big...Going Bold...Checkout New Skin of Steel Website

http://skinofsteel.org/index.html

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.

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

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/

Thursday, February 25, 2010

Pokkin & ah Proddin & Genotypin

Just got the important post IL-2 scans scheduled.  CTs and MRI are scheduled for March 9th.  PET is scheduled for March10th.  Dr. Kaufman and I will meet right after the PET to determine whether the IL-2 had a positive impact or not.  If IL-2 is successful, I will head into four more series of IL-2 requiring four inpatient stays.  If not, we will see if my brain is clear of lesions.  If I am clear, I will again be eligible for some clinical trials which we will evaluate as well as chemo combo options.  

In the meantime, I finally secured my primary tumor from Evanston.  It is now in the hands of a lab at Rush for B-RAF testing.  If any of you saw the NYTimes Melanoma series I posted this week, you'll know why that mutation testing is critical.  I have a 40-50% chance of having the mutation which may make me eligible for a new Phase III trial using PLX-4032.  

I cannot emphasize the importance of patients keeping ownership of their tumors, should they face chronic illness.  The days of one stop shopping for treatment are over.  If you are lucky enough to survive, you may very well find yourself following the best research and the qualified expertise...which definitely moves around these days.  Of course, getting my second tumor block out of the National Cancer Institute is a lesson in patience and determination.

Thursday, February 11, 2010

Susan is a 5 Round Champ!  She rested better than ever last night due to the mix of  "cocktails" she imbibed in (of the medicinal nature)!  She just started the drug protocols that will help to eliminate the water weight gain and will hopefully be discharged late afternoon or early evening today.  No appetite, but the legs are strong for walking!

Wednesday, February 10, 2010

It is Wednesday night at 7 pm and Susan is now on Round 5.  Her blood pressure continues to be at normal levels and Dr. K is even considering a Round 6 (tbd Thursday at 5 am).  As expected, the itching is more problematic this go-around but Susan is managing with ice and benadryl.  She's even been able to catch a few winks off and on.   Thanks to everyone who continue to keep her in your thoughts and prayers! 

Tuesday, February 9, 2010

Rush Update and News

All is going well at Rush so far.  The 3rd dose of IL-2 is flowing now as I write this post.  Unlike the last series, Susan has not had blood pressure problems and therefore no additonal meds are needed to sustain it at reasonable levels.

And there is good news!  Susan's LDH levels are at a normal level for the first time in months! (LDH levels are a measure tumor activity. )  Dr. Kaufman is very happy about this level and other good indications of a positive reaction. Not only is he hoping Susan's t-cells respond to the IL-2, but also the modified cells that were given to her when she was at NCI.

He also discussed with us the rates of response to IL-2, which are higher than we have read about in the literature.  Every article sites a 6-11% response rate, but in actuality, a higher percentage of patients do respond:   
      6%  have complete regression
    10%  have partial response
    15%  are stabilized for 3-4 years
We are directing our hopes and thoughts to be on the right side of those odds!

Lest you think it is all business here, we have lapped this floor a million times, are in pursuit of Bruce and others and have solved many family, local and national problems!   Karen

Friday, February 5, 2010

Susan's Back Story: My 5 year Sword Play with Melanoma

It has been suggested to me that because this blog is growing so quickly (close to 500 visits in the first month), that not everyone knows how I morphed into this "Medical Tigress".  So for those of you interested in the gory details, here is my back story.

On January 8, 2008, the world’s largest and best-funded Melanoma Center released me.  After almost three years of treatment at the National Cancer Institute in Bethesda, Maryland, including three clinical trials, 40 platelet units and 60 blood units, hundreds of thousands of tax dollars, and the collective intelligence of some of the best and the brightest, Melanoma was defiantly consuming my liver and spleen.   A chemo called Temodar was prescribed.  This can be the kiss of death for Melanoma patients.   It is given when all hopes of survival are relinquished.  Temodar is only effective in 10% of Melanoma patients.  I was given 6 to 12 months to live.

As a mother given 6 to 12 months, I quickly set real clear goals.  I taught my sophomore son how to investigate colleges and interview the good profs…a year before any of his peers even had to say ACT.  I volunteered with my eighth grade daughter, at the Therapeutic Riding Organization of Tucson so she could learn the joy of marrying her love of horses with service.  I swallowed my pride as a “real” world traveler and booked that dream cruise my husband wanted even though it was the antithesis of global sensitivity.  I drilled into my small business staff that they were trusted, capable of taking initiative, and must help the company grow if I could not. Then I convinced an Olympic medalist to coach my patient advocate team to row crew for an 8 women boat, so they could get a much-needed mental break.  Nausea was defied when my advocate team convinced me to start training in the boat too, so that we could race the local high school girl’s crew team.  It was also critical to educate the public about the value and impact of platelet donations.  And just because I was still standing, I agreed to teach middle school kids how to take the lead in a village fundraiser by owning their message and staying on task.  Nope I wasn’t manically trying to fit the rest of my life into one year, no not me.

While frantically reaching for goals, I was still left with the reality of having to breathe and lead a normal life as the six and then twelve-month deadlines past.  I argued with myself in the shower about whether Obama was really the only one who had the audacity of hope.   Occasionally, I submitted myself to new clinical trial eligibility assessments only to be humiliated.  Sheepishly and with great frustration, one day I admitted to my advocate team that I was tiring mentally and physically.

On October 28, 2009, after twenty-two and a half months of chemo, lab tests indicated that the monster was running loose again.  Subsequent scans showed that not only was I out of remission but that Melanoma had the audacity to hit my brain.   There was only one problem.  It was clear to my local oncologist, palliative care doctor, advocate team, friends, family and even my mother, that I was still strong enough to fight, which meant that it was time to defrost hope…not an easy thing to do after some of the top research docs in the world had basically deep freezed that belief.

After wrangling with my fears for two days, I sat down and researched every clinical trial.  Only one stood out.  A company called Biovex had a new biologic that made it to Phase III.  The trial had a 30% response rate, with minimal side effects.  Furthermore, the Oconovex trial’s Head Researcher was Dr. Howard Kaufman, Rush’s Director of Cancer Programs, right here in Chicago.  I called Rush but no one knew Dr. Kaufman, nor was he showing up on Rush’s website.  Frustrated, I picked up the phone and called the CEO of Biovex in London.  Within one hour his Chief Medical Officer, based in Woburn MA, called me and explained that Dr. Kaufman was still directing Columbia University’s Melanoma Clinic and would be moving to Rush December 2nd.  He called Dr. Kaufman that day on my behalf.  On December 9, 2009, I was the first Melanoma patient Dr. Kaufman met at Rush.

I did not select Dr. Kaufman just because he was willing to see me.  In fact the day before meeting him, my advocacy team and I interviewed another Melanoma specialist at one of Chicago’s premier research hospitals.  I chose Dr. Kaufman because he sees a treatment plan with many options and believes he can keep me alive long enough to be on the receiving end of far more effective treatments.  For the first time since the onset of this disease, I am being offered better response rates than 6% or 11%.  My tumors are finally being genotyped so that treatments can be customized based on my own mutations.   Top researchers now believe that we are three years away from treatment combinations that will start offering cures.

Am I out of the woods?  Hell no.  On December 15, I had a crown screwed into my head.  Dr. Ross Abrams, Director of Rush’s Radiation Oncology, used radio surgery to eliminate two Melanoma lesions in my brain.  The noggin must remain cancer free for two months before I can qualify for any clinical trials.  On January 11, I became Rush’s first Interleukan-2 (IL-2) patient in six years.  The week was rough with the typical side effects of IL-2 including very low blood pressure, vomiting, extreme rash and hallucinations. On February 8th I will have a return engagement with IL-2 at Rush, and if my body allows, I will have more rounds while we wait for new drugs to come available.  It is all part of the formula for a cure.

Am I glad to be alive?  Hell yes.  I know that folks are facing terribly daunting challenges, especially now, and that my physical discomfort has been manageable.  I know that for whatever reason, I am still alive with a brain that works.  I know I am blessed with the opportunity to change how patients face Melanoma in Chicago.  I know that I have been paired with a doctor who shares my belief in the need for a new research paradigm. I know I am blessed to be associated with a group of advocates, family, friends and business associates that share the same vision.  I know that if I am brave enough a Melanoma Research Center could be developed at Rush that is at the forefront of finding cures for half the Melanomas in five years.  I know that I could help make sure you never walk in my shoes.


 

 

Tuesday, February 2, 2010

I Propose Rush develop Chicago's First Melanoma Research Center

A Melanoma Research Center for Rush

"get the latest advances coming out of research institutions into the patient with cancer."
-- Goal of Dr. Howard Kaufman, New Director of Rush Cancer Programs

Melanoma is the fastest growing cancer in the U.S. and Worldwide
  •  American Cancer Society estimates risk of developing invasive melanoma is 1 in 41 men and 1 in 61 women.
  •  Incidence of people under 30 developing melanoma increasing faster than any other demographic group, soaring by 50% in young women since 1980. 
  •   Melanoma is most common cancer for young adults 25 to 29 years old and second most common cancer in adolescents and young adults 15 to 29 years old.
  •   Midwest Melanoma patients often must seek treatment in Bethesda, Houston, New York, and Boston.
  •   Melanoma’s death rate is directly proportionate to the patient’s proximity to quality care


    Rush is a global medical hub capable of building a Melanoma Research Center in Chicago, which expedites advanced patient treatment like no other

    • Rush is committed to becoming Chicago’s premier Cancer Center with a full range of critical research and treatments that could approach melanoma in a new manner.
    • National Cancer Institute has overseen the bulk of melanoma research dollars, trial approvals, and actual trials but effective treatment remains beyond reach.
    •   Time for bolder paradigms that involve multiple medical disciplines, while combining and sequencing existing and new treatments.
    •  Dr. Kaufman exemplifies this approach, leading research in new classes of biologics, building expertise in sequencing treatment combinations, and fostering relationships with different research lines, pharmaceutical companies, academic institutes, insurance forums, and governmental entities including the National Institutes of Health and NCI.
    •  New resources could align to help make Rush’s Melanoma Research Center a reality, due in part to a tenacious Chicago recipient of 3 NCI Clinical Trials who has come to Rush because of Dr. Kaufman.
    • This patient’s shared vision of finding a cure has a team of advocates and business professionals anxious to collaborate on developing this Center via an abundance of new resources, talent, and determination.
    • Over a decade since the last melanoma drug was approved.  Today top researchers assert that within five years, more than half of all melanomas will be curable.  

      These cures should happen at Rush. 
     


Friday, January 29, 2010

Encore at Rush set for Feb 8, 2010

Just got the word from Rush that I will start my second series of IL-2 on Monday, February 8th.  I will be admitted at 7:30am to the now familiar 11th floor of the Kellogg Oncology Ward.  The first round will be administered somewhere around 4-5pm.  Two weeks ago I lasted 6 rounds.  This time will be less, due to the fact that the body wises up and refuses to cooperate sooner.  Once again Masuo, Sharon, Debbie, and Karen will support me in the hospital.  That will be an easier job because of the careful monitoring of my fabulous Home Strengthening Team.  That team is composed of Marie Fischel, Margaret Nikitas, Jodi Shannahan, Mary Radelien, and Henrietta Day.  They made sure that good nutrition was maintained, meds were taken, yoga poses were tried and kids were intercepted.  I will share one little secret.  If you ever get hit with a whopper of a medical ailment, nobody's cooking can convince you to eat, like Betty Billington's can.  The woman must have a direct line to the Food Goddess.  Her corn bread alone is reason to get up in the morning.  Next week I shall continue with recuperation, prep some cancer fighting food to bring to the hospital since institutional cuisine was not working so well, and continue to flesh out this idea of developing a world class melanoma clinic in Chicago.

Monday, January 25, 2010

In search of a Moniker

Lunching with my friend Marie Fischel today, the issue of my hospital rep was raised.  Based on my "unique" patient style, Marie, a dentist herself, suggested that I quickly claim my own hospital moniker/label/nickname before hospital staff "assigned" me one.  Although in all honesty, I'll bet the staff didn't miss a beat in slapping a lovely secret pet name on my charts based on my performance/visit last week.

SO for those of you creative souls with nothing better to do in this grey month of January, let the naming begin.  Suggestions will be taken until February 1st, as I feel that I should not start the new month without a proper moniker.  The prize shall be your very own pirated hospital gown.  Don't hold back.  I know that some of you have just been waiting for an excuse to let it rip.

SUNDAE: I Know We Can Make It If We Try, Oh Yes We Can Can.

SUNDAE: I Know We Can Make It If We Try, Oh Yes We Can Can.

Posted using ShareThis

Thursday, January 21, 2010

Sitting on the Edge

Reading the Melanoma Research Foundation's (MRF) Winter Newsletter, I was again struck by the possibility of sitting on the edge of a miracle.  I know cancer patients can sound overly and sometimes ridiculously optimistic.  For those of you who have watched me fight melanoma...you know I've been a hard-core pragmatist since 2005.  But I really am struggling right now with a heat in my belly that is taking the form of hope.  Here is why...

Tim Turnham, Exec Director of the MRF, states in the Newsletter:

Earlier this fall, I heard one of the top laboratory researchers assert that within the next five years, more than half of all melanomas will be curable.  While others may object that this it too optimistic, I have not met anyone who disagrees that big changes are coming, and coming soon.  Given this opportunity, we are compelled to do everything in our power to accelerate the pace by which treatment options are investigated and, if shown to be promising, moved into the clinical setting.  We cannot make this happen by being timid, or through modest growth.

That said, my shoulder aches, my neck is pinched, my skin's peeling, fever comes and goes, fatigue is a constant AND I remain psyched.  I believe in my heart of hearts that there is no reason melanoma patients can't benefit from the example the breast cancer fight has made.  We are sitting on the edge of finding cures for a disease that discriminates against none of us.

Wednesday, January 20, 2010

Excellent Inaugural Flight...Rocky Landing

Hoping this post finds all of you ready for an adventurous and interesting day.

This is a quick post to let you know I am doing fine.  We had an amazing ride last week approaching IL-2 with several of Dr. K's new tools which enabled me to reach 6 rounds.  There is a definite benefit from being able to gain from others experience and Dr. K clearly has manipulated IL-2 a lot.

RUSH staff were real troopers.  At one point one of my nurses had to test my blood pressure every 5 minutes from 8pm until 1am, while we titrated a "constrictor" into me to kick my sleepy blood pressure up. Nurse Rhonda and my dear friend Karen Hirsch had the patience of saints.  Karen has seen me through many a rough time and continues to amaze me with her calmness. I on the otherhand, was not at my most zen.

In the meantime, poor Masuo was trying to get two teenagers through their last week of school before finals.  This was a little bit more of a challenge now that the kids are older and more aware.  Chris and Sachi have been incredible for almost five years now.  It is hard to believe this all started when Chris was 13 and Sachi was 11. Luckily, they have had my mother, Joan, to lean on throughout these years.

Perhaps the strongest sense I am left with is one of collaboration.  We are definitely charting new ground with Dr. K who seems like a humble but very able leader.  There is a lot to like about this guy which is important bkz the road I am on is rocky.

Lest anyone think this is a walk in the park, be assured that my landing was a challenge, filled with nausea, hallucinations, and vertigo.  Debbie Hepburn had the good sense to start very carefully monitoring the drugs when I could no longer keep it straight.  She is like a dog with a bone.  This is a good thing as we realize now we have to work harder at the "medication management process".  Deb has called for our own internal board review...and we will approach Series II in two or three weeks (that will be determined by a blood test today) a little tighter and sharper.  Timely drug delivery seems to be a real challenge, which is critical when you are need to take premeds for the drug.  Of course it is the gentle hand of Sharon Mann reminding me that while I fight like a tiger...we need to be sure to set some pillows, music, and bowls of soup aside for needed rest in the hospital too.

Lastly, I want you to know that I am dreaming big time these days.  I am just going to put this affirmation out there in the universe.

I WANT CHICAGO TO HAVE ONE OF THE BEST MELANOMA CLINICS IN THE WORLD.

I WANT TO RAISE A SHIT LOAD OF MONEY TO MAKE THIS HAPPEN...SOON.

ANYONE READING THIS IS CAPABLE OF HELPING ME, IN THEIR OWN UNIQUE WAY, TO MAKE THIS CLINIC A REALITY.

There I said it. Enough with traveling to the coasts.  Unfortunately, there are plenty of people right here in the Mid West facing this disease. Chicago has a terrific history of scientific discovery, philanthropy and guts which are the cornerstones of reaching a goal like this.  Now don't be surprised if I ask you for help.  I have some ideas and with determination and collaboration this can happen.  I still have to fight with melanoma, but I am also determined to push this goal hard.

OK now I am going to take a nap.

Thursday, January 14, 2010

Steel is kicking @*&#$*

Just met with Dr. Kaufman and wanted to report the news.  Susan's white blood cell count dropped to 1.5 and her platelet level is now 56 (both extremely low) but he said that was good news!  He said that a low white blood cell count and low platelet level are both good predictors of success with IL-2.  He added that several reports say that patients tend to do better with these results.  He is very pleased with where Susan is at and that he feels she is doing "excellent".  He thought things would look much worse at this time so...things are good.  He is going to stop in tomorrow morning and reassess things and then decide if there will be a 7th course of IL-2.  New predictions are that she will be home Sunday morning...earliest.  Debbie Hepburn

Day 4 and strong as Steel

Susan made it through her 6th round of IL-2 (11 am). She is amazing!  Her skin has taken a bit of a hit but a new medication (new to Susan) was introduced to her (Atarax) and it makes a huge difference in making her skin condition more tolerable.  In addition to working hard with IL-2, she had her second hypnotherapy session at 11 am today and then requested a meeting with the pharma supervisor to try to solve the problems with drug delivery and other needed improvements here at Rush.  (She never rests...).   Dr. Kaufman is extremely proud of Susan and stated that she is an excellent patient and he is happy with her results.  (personally I think he is really amazed that she has made it through 6 rounds of IL-2 and is still requesting more!)  The nurses here are wonderful, dilegent,disaplined and really interested in Susan.  She is the first patient here that is in IL-2 treatment (in 6 years) so she is training them well. The residents are engaged and active as well (and cute).  While Susan is dealing with a few issues of low white blood cell count, low platelets and at times, low blood pressure, Dr. Kaufman will meet with Susan later this evening to discuss the possibility of a 7th round.  It probably wont be administered until midnight or later so we will keep you posted.  If not, Dr. Kaufman said that 4-6 rounds would be excellent and we are there!  Susan will be home, earliest Friday afternoon, latest Saturday evening.  We will keep you posted.  Thanks for all your wonderful thoughts and prayers...Debbie Hepburn

Wednesday, January 13, 2010

Rushing at Rush

Day 3 started with my 4th round of IL2 at Rush.  All is going well with tolerating the side effects, which include a very low blood pressure managed with drugs, beautiful water weight gain, itching, fever and a bit of restlessness.  A delay in receiving the fourth round may be working in my favor as I have a bit of time to recover and regroup for the following rounds. ( Dr. Kaufman feels receiving 4-6 rounds would be a great success.)  The fifth round could be administered at noon. 

I will post again soon.

Friday, January 8, 2010

Starting IL-2 at RUSH on Monday, January 11th

NOTE: If you just want to know what is going to happen skip down to the 5th paragraph.

Well just as I expected, after careful consideration, IL-2 has been chosen as the next treatment. Some of you might remember that I had a lovely go round with two series of this drug at the National Cancer Institute in the fall of 2007. After two series there was no tumor regression and I was moved onto cell transfer therapy.

Why revisit a "failed" drug? Because we are trying to figure out how I lasted twenty-two and a half months, between Jan 2008 and Nov 2009, on a chemotherapy that had a 10% chance of success. Furthermore, when successful, that chemo is usually effective for only 9 months. Many of you know that after four clinical trials, IL-2, and chemo, I refer to myself as a human cocktail.


http://www.food2.com/images/blogposts/Sexy-Halloween-Cocktails.jpg
Susan as a Cocktail

Consequently, it could be that we "failed" to understand the interactions all of my treatments could have on each other. It's very conceivable to my doc, my advocate team and me that while IL-2 might not be effective alone, it might have a latent boost on the immune system when triggered by something else. My doc is also making the argument that a body's antigens change over time, which might be why he has seen some of his patients respond quite favorably to IL-2 after no response initially.

The bottom line is that while IL-2 still only has an 11% response rate, it just might be able to trigger my immune system when I start the next clinical trial...which could be in March. (It is interesting to note that when NCI treated me with cell transfer therapy, they used IL-2 as a chaser).

What is IL-2 anyway? It is a protein produced by T-cells in response to antigenic or mitogenic stimulation. IL-2 is required for T-cell proliferation, discriminating between foreign (non-self) and self, and other activities crucial to regulation of the immune response. It can stimulate B-cells, monocytes, lymphokine-activated killer cells, natural killer cells, and glioma cells.

So the plan is as follows
:

Monday, Jan 11th, 7am: Admitted onto RUSH Oncology Ward on 11th floor of Hospital

Monday, Jan 11th, 6pm: 1st round of 1st series of IL-2 administered. Will receive a round every 8 hours for as long as my heart and/or mind lasts. IL-2 has lots of fun side effects which are tricky but not permanent. In 2007 I lasted for 8 rounds the 1st series and 4 rounds the 2nd. Unfortunately, there is no clear statistical evidence that receiving more rounds of IL-2 is more effective.

Friday, Jan 15th: Anticipate Release

Jan 16th - Jan 31st: Recuperate carefully with compromised immune system

Monday, Feb 1st: Admitted back onto RUSH for 2nd series of IL-2

Friday, Feb 5th: Anticipate Release

Monday, Feb 22nd: Anticipate Series of Scans to evaluate IL-2 impact

Monday, Feb 22nd: Anticipate repeating Series four more time if impact is positive.

Early March: Anticipate entry into Clinical Trial if impact is negative.

Friday, April 30th: Possibly complete 6th and final series of IL-2

Lastly, for any of you considering playing mind games with me during IL-2 treatment...just be sure to make them fun!

NYC did... so how could Chicago raise awareness?

Marc Jacobs Reissues Celebrity Nude "Protect the Skin You're In" Tees to Benefit Melanoma Research:

Naomi Campbell, Heidi Klum, and Victoria Beckham Put on Birthday Suits for T-Shirt Campaign, Raising Over $1 Million for Melanoma Research at NYU Cancer Institute

May 17, 2009

NEW YORK—Marc Jacobs has reissued color versions of some of the most popular "Protect the Skin You're In" celebrity nude T-shirts as part of an ongoing campaign to raise awareness about the deadly skin cancer and benefit melanoma research at the NYU Cancer Institute at NYU Langone Medical Center. The campaign, which features more than a dozen celebrities baring all for skin cancer, has already raised over $1 million for the NYU School of Medicine's Interdisciplinary Melanoma Cooperative Group (IMCG).

But it wasn’t just altruism that got Jacobs involved -- or directed him to NYU. It was his longtime business partner Robert Duffy, who several years ago was diagnosed with melanoma after an NYU dermatologist friend convinced him to get a biopsy on a suspicious mole on his forehead.

Jacobs’ campaign is ongoing, and more celebrities are signing up. Will they all be naked? Yup. Part of the deal. “Let’s face it, naked celebrities get people’s attention -- and getting attention means raising more money and awareness,” says Jacobs. “Plus, I kind of like the fact that it’s a little bit ironic for a fashion company to be putting out the message: Forget about clothes. What’s important is saving your skin.”

You can see the Heidi Klum's black current tee as well as other celebrities and colors in the SPECIAL ITEMS section on MarcJacobs.com. You have to find the shirts by scrolling to the right to about the midway point.

T-shirts can be purchased in Chicago for $35 at:

Marc by Marc Jacobs Store

1714 N. Damen Avenue
Chicago, IL 60647, United States

Tel: (773) 276 2998

Here is a window pic from his prior campaign

protect the skin you're in by this is emily.

Marc Jacob's 2008 melanoma awareness and fundraising t-shirts featured naked celebrity photographs and clever slogans such as “protect the skin you’re in,” “protect your largest organ,” and “save your ass.” Celebrities, who posed despite the advice of agents and managers, include Winona Ryder, Rufus Wainwright, Eva Mendes, Julianne Moore, Hilary Swank, and Selma Blair. Photographer Brian Bowen Smith traveled around the world multiple times for celebrity photo shoots for the project, which pays tribute to the late Dr. Jesse Rubin, a former dermatologist at NYU Langone Medical Center.

Tuesday, January 5, 2010

Docs who Specialize vs Docs who Customize

I am in complete agreement with Stan Adler's approach to treatment. He states on the Melanoma Research Foundation site that:

"The key for me was to identify the treatment sequence I would follow if the previous treatment failed. In my opinion, doctors seem to specialize in or favor specific treatment options. To me, choosing my doctor first meant limiting the number of treatment options I could access. So I decided instead to research the treatment sequence I wanted to pursue and then find the best doctors I could to implement them."

My own experience has also led me to believe that survival rates will increase when we can truly customize treatments for cancer patients. It looks like the UK-based Wellcome Trust Sanger Institute is bringing us closer to customization. They just cataloged the genetic maps of skin and lung cancer and have pinpointed the specific mutations within DNA that can lead to tumors. Scientists found that the DNA code for skin cancer contained nearly 30,000 errors. Researchers predict these maps will offer patients a personalized treatment option that ranges from earlier detection to the types of medication used to treat cancer. The genetic maps will also allow cancer researchers to study cells with defective DNA and produce more powerful drugs to fight the errors, according to the the study's scientists.

The challenge is how to find the right sequence of melanoma treatments from the right doctors'/clinics' specializations that can keep me alive long enough for a customized treatment to be developed. Of course then there is the issue of how to find the melanoma docs who become more interested in customizing treatment based on individual patients' needs rather than in specializing to find "the" cure. The reality is that we won't progress without both kinds of docs.

So I am headed to Rush Medical on Thursday to develop a treatment sequence with a doc who advocates "getting the latest advances coming out of research institutions into" cancer patients. He is a Head Researcher for an immunotherapy that I want to try but also has experience with a variety of treatments that might keep me alive until customized treatment is a reality. Guess it is game time!