Many stage 4 melanoma patients are seeing all their tumors disappear in a new treatment being pioneered at the U.S. National Institutes of Health in Bethesda, Maryland — called adoptive cell transfer (ACT). It’s a huge step forward for us melanoma survivors who previously had so few options that could lead to anything near a “cure”.
I underwent the new treatment — still officially experimental — in January-February-March 2010. I was in year four of my battle with melanoma that started on the top of my balding scalp, then traveled to the lymph nodes in my neck, and then to my lung. I had been treated at one of the world’s best melanoma hospitals, Yale-New Haven in my home state of Connecticut USA. Yale did three surgeries on me, a year’s worth of Interferon, and two ugly weeks of Interleukin-2. When the cancer was still in my lungs, Yale referred me to the new NIH treatment.
Here’s how it works. NIH researchers have discovered the body makes specialized white cells to fight the cancer — they call them TIL cells (tumor infiltrating lymhocytes). Surgeons at NIH took out the largest tumor they could find, which was rushed to the NIH lab. Just four days later, I was standing in the lab looking through a microscope at those little TIL cells. The lab spent another four weeks growing my cells (their target is 50 billion cells, but for me they grew 67.2 billion!). When the cells were ready, NIH called me back and hospitalized me for another three weeks. During this time, they took down my immune system (one week), and infused the new cells into my bod, and spent the next two weeks rebuilding my immune system.
I’m the second Yale patient to go through the ACT / TIL treatment. The first, “Roslyn”, had melanoma tumors throughout her abdomen. For three years now, she is totally cancer free. We’re thinking that wonderful thought for her: CURE! I have been scanned often in the year since my TIL treatment, and the doctors are seeing only 2 tiny lung tumors that have either been unchanged or shrunk. No new cancer anywhere else. Since there has been no change and actual shrinkage in 15 months, the doctors are cautiously hopeful that they might be necrotic or scar tissue images. It’s possible my TIL cells have already done their job and attacked the cancer — but I won’t know for sure for another year. I am in perfect health. A third Yale patient, “Jeff”, had the TIL treatment in the spring of 2012, and within two months all his tumors disappeared except for one, and that shrunk dramatically.
This ground-breaking new treatment is great because the new TIL cells are my own cells — there are no rejection issues. They keep on living in your body and travel throughout looking for melanoma cells wherever they are. My personal strategy was always to attack melanoma before it reached my brain — and that’s why I jumped at the chance to participate in this new research trial.
Some caveats: first, you have to been in good shape to go through the ACT/TIL treatment. The process of taking down your immune system is nearly identical to what leukemia patients go through when they get bone marrow transplants. So it’s tough. You’re prone to infection and horrific nausea from the chemo that takes down your immune system. But I never once even had a fever, no infection, because they fill you with anti-virals, anti-fungals, and anti-bacterials. As for the nausea — I just toughed it out because I was there for the cure!
Second: this ACT treatment is showing better results than any other melanoma therapy out there (except for surgery). Response rates are near 70%. NIH is seeing total remissions in at least 25% of the patients. So, the research is still attempting to answer why it works for many patients, but not all patients.
Third, since it’s still experimental, most insurance plans do not cover it entirely. TIL is being done currently in only three places on Earth: NIH in Maryland, MD Anderson Cancer Center in Houston, Texas, and a hospital in Israel.
Fourth, for the time being, patients with brain mets cannot be candidates for ACT/TIL (unless their mets are so small). The chemo that takes down your immune system also temporarily damages your platelets (clotting factor) subjecting the brain met patients to potential strokes. However, I met two NIH patients whose melanoma brain mets disappeared after the TIL treatment. Those beautiful TIL cells do get through the blood/brain barrier!
Learn more about this awesome new treatment by going to the NIH website:
http://www.clinicaltrials.gov and then type “TIL adoptive cell” in the search field.
Or, you can contact me directly at RVH55@aol.com
Love & Hope,