Tuesday, July 2, 2013
Ode to Pati....a fallen comrade.
Shit! What the hell? She was beautiful and smart and kind and funny and an amazing wife, daughter, mom, and professor. And I didn't even get to know her. But, I've learned from her. So can you.
As best as I can piece together Pati was diagnosed with melanoma, thin, easily removed, in 2008. (Five years after my diagnosis.) Despite that surgery and sentinel node biopsy, melanoma returned in March of 2009 with a node found under her arm. She had a complete lymphadenectomy with 24/45 nodes positive for melanoma and started radiotherapy. In August she entered a trial with dendritic cell vaccines and interferon. In December on 2009, distant metastases were found. In January of 2010, she had surgery to remove 5 small tumors. She was happy that the tumors were positive for the BRAF V600 mutation. However, fighting her insurance company for coverage proved an impossible feat. She discovered an organization called "Cross Border Health". Through the help of that agency, she attained a place in a Phase III randomized trial comparing PLX4032 (which ended up being one of the first BRAF inhibitors approved...later named Vemurafenib) with a 60-70% response rate vs. a conventional chemo agent with a 5-13% response rate. She railed against such insanity much as I have done here before. Why on earth would you place sick and dying people in a trial with a drug that is ALREADY KNOWN TO WORK FAR BETTER pitted against a drug KNOWN to do little or nothing? WHY???? What does that prove? What pretend game of science are we playing????? But, there it was. Finding she had been randomized to the chemo arm, she dropped out. In July of 2010 there was Temazolomide. In September - Ipi 3mg/kg for four doses. March of 2011 - more ipi, same song, second verse. In June she began Vemurafenib and was NED in Feburary 2012. At some point things changed and she began a course of ipi with DCX (not really sure what that is exactly). Finally, later that year, she was allowed into a Merck anti-PD1 trial. Success was not to be found. In December of 2012 she learned that anti-PD1 was not working and began a reinduction of Zelboraf. In February, always the fighter, she began the arduous TIL process. Raising hope, gaining participation, finding funding. Then, girding her loins for one hellacious ride.
What is TIL? TIL (Tumor infiltrating lymphocytes) are used in an ACT (adoptive cell transfer) therapy like this: A tumor is removed from the patient's body. Lymphocytes are collected from it. Those lymphocytes are tested in order to identify the cells that show the greatest anti-tumor activity. Then....those particular cells are grown in a lab for several weeks. If the TIL cells grow sufficiently, the patient is given a body pounding dosing of chemotherapy to rid the body of other lymphocytes so that the new TIL batch will be accepted more readily when they are infused with no other immune cells there to attack them. The newly grown lymphocytes are then returned to the patient in an infusion along with a cytokine (immune stimulating agent) like IL2 (interleukin 2). In numerous studies TIL demonstrates a 50% response rate in patients with metastatic melanoma.
For the past 5 months (not to mention the past 5 years) Pati dealt with painful procedures, horrible side effects, demeaning debilitation, and fought on. She had her 43rd birthday in April, while still in the hospital receiving TIL. She was not to fall in the successful 50%. I learned today that she has passed.
Life is a great deal dimmer. A world class warrior, a beautiful human, will no longer share her amazing self with the rest of us. Pati brought the world together - literally. Born in El Salvador, moving to Australia, time in Geneva and California, her life in Brussels. Not only that, while working and dealing with melanoma full time, not to mention creating a family with her husband and two beautiful little boys, she founded M-ICAB, The Melanoma Independent Community Advising Board. To say that she will be missed is an understatement like no other.
Feel her spirit here:
Pati's video...What is one life worth?
Pati's blog about her life with TIL
Thank you, Pati. You showed us how to live. I wish you and your loved ones peace. - c