I hope to make contact with my Congressman tonight.
Here is a copy of that letter:
Congressman Dan Maffei,
I have a story to tell.
Last July (2005) I was riding my bicycle to work at the Eastman Kodak Research Labs about 3 miles from home; I was wearing a knapsack to carry my things to and from the labs. I started noticing an ache on my back. So I decide to go to the dermatologist. To make the log story short, it was cancer. Melanoma.
Over 64000 a year are diagnosed with Melanoma and 8500 will die this year alone. There is no cure for this type of cancer and if you progress to a stage IV were it has metastized, you usually have 6 to 9 months to live.
Anyway, I had to go out of state to get the specialized treatment. In doing so, I did four clinical trials to try to save my life. The last two were immunology therapy. One was anti-CTLA-4 blockage (Monoclonal antibodies) and the other was high dose Interluekin-2 (IL-2). These combinations of therapy just so happen to jump start my immune system. At the time of the therapies I had 40+ tumors in my Lungs.
Today 26 months, I am (NED) no evidence of disease.
So being a researcher by profession at Eastman Kodak for 25 years (I hold a couple of patents that I helped coauthored), I began to research and piece together why my treatment has worked. I have contacted Dr. Steven a Rosenberg and other colleagues to review my Theory.
Here are just some of the responses from the Clinical Oncologists:
“Fine theory but just theory that has never been tested in relevant clinical setting…”
“May I forward this to one of my colleagues? He may have some insights.”
“Thanks for your note. You really refreshed my mind! I am glad things have worked out relatively well for you!. Did you get rid of your disease? I am glad you are writing your story and hopefully inspiring a number of patients in dire need of hope. Let me know how can I help.”
“Thank you so much for sharing your experience and thoughts.
Some patients have indeed experienced tantalizing responses after treatment with CTLA4 antibodies. Let me assure you that many of us in the field keep working hard on figuring out what explains those successes so that, armed with that knowledge, we can extend the benefit to many cancer patients. Experts agree that the way forward requires combinations of immunotherapies. Despite the many obstacles (scientific, regulatory, operational, intellectual property, economic, etc), Pfizer Oncology is moving decisively in that direction.”
“Congratulations,
I think you may find our ASCO abstracts interesting this year. Especially the one that talks about the time dependent variability of immunoreactivity in patients with melanoma.”
(ASCO) is the American Society of Clinical Oncology. The meeting this will be held on May 31-June 2, 2009 in Florida.
As you can see, I am trying to get the word out and hopefully gain some traction. I have tried to contact the two drug companies because this treatment/ theory involves their two drugs and they must be used in concert together to obtain a synergic immune response.
Dr. Rosenberg and colleagues did a trial at the NCI but the dosage and the timing of each of the drugs were not done at optimal conditions at the time. Based on my theory and other researchers now know that there is a “time dependent variability of immunoreactivity in patients with melanoma” and that a higher dose is needed to obtain a immune response.
“I don’t think we can draw any conclusions yet based on your experience with a single dose. However, one thing we do know is that dose does matter. Last year at ASCO, we presented data showing that higher doses of ipilimumab (10 mg/kg) were better than 3 mg/kg or 0.3 mg/kg. I once again applaud you for your efforts to understand the excellent response which you have had.”
As you can see, I am passionate in finding a cure/stabilization. I have come to you as my representative, to ask for your assistance to help further this cause because I believe this will benefit the Nation as a whole and even the world as it pertains to today. We need to get this Drug FDA approved as soon as possible.
We can stand up to cancer and Move Mountains if we all work together!!!!!!!!!!
Thank you for your time and I hope to hear from you soon.
Please don’t let this fall on deaf ears. I will volunteer to help move this forward. We owe it to the 65000+ patients in Our Country and the world.
Sincerely,
James M. Breitfeller ( Patient/Survivor/Researcher of Melanoma Stage IV)
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