Often times change comes about through patient observation and advocacy. Many professional and governmental organizations involved in patient healthcare such as the US FDA, ASCO ( American Society of Clinical Oncology), ECOG-ACRIN (Eastern Comprehensive Oncology Group-American College of Radiology and Imagining Network), HOPA (Hematolgy/Oncology Pharmacist Association) have added patient advocates to committees and working groups to better address the needs of patients. I’m involved as a patient advocate in the above listed groups and work closely with oncologists and surgeons of those professional organizations. In one of those groups I serve on the GI cancers committee involved with designing and modifying and reviewing clinical trials.

With respect to the comments made by your oncologist, it is not the type of cancer in question…it is about a chemo agent that is neurotoxic to peripheral nerves. Oxaliplatin is one such neurotoxic agent causing debilitating and often permanent neuropathy. I doubt very much that your oncologist endured treatment containing a neurotoxic agent that affects peripheral nerves. I have and it is not a pleasant experience.

As an 11 year survivor, my diagnosis and treatment started in 2012. There was no anecdotal accounts of chilling extremities at that time that I recall. Otherwise having come from a professional career in cancer and immunology research, I would have been receptive to trying the technique with the first cycle of Folfirinox. I understand the theory and mechanism of the technique. Although I finished my standard of care chemo regimen nearly 9 years ago, I go back once or twice a year to visit my first oncologist. I recently brought up the discussion on his opinion of the technique and whether he allows his patients to use it if it was requested. He had no issues with a patient wanting to try the technique. Next week I will be at the semi-annual meeting of ECOG-ACRIN and will bring up the question about the use of icing of extremities to reduce or eliminate sequelae as a result of chemotherapy with oxaliplatin and other agents known to damage peripheral nerves. The GI Cancers Committee consists of several noted pancreatic cancer oncologists so it will be a good opportunity to ask this question and note feedback.

I am also a firm believer in the use of obtaining second opinions. When I get a response that doesn’t sound quite right or outright questionable, I’ll seek multiple opinions. And I have done so throughout my 11 years of treatment and routine surveillance. I love my oncologists but I am not married to any of them. If got a response I wasn’t happy with and there were differing opinions, I gathered information through multiple consults to make an informed decision. And sometimes it didn’t agree with the first oncologist. I wasn’t afraid to stand my ground and justify my point of view. Patient self-advocacy is extremely important in dealing with catastrophic illnesses. The tumor board where I was initially treated put me on palliative care right from the start because I was restaged as IV one week after my Whipple surgery. That’s when I spoke up. I was then given very aggressive chemotherapy and while no one believed a cure by chemo was possible, I proved them wrong. What I look for in a physician is being able to “think outside the box. Someone who is open-minded and can adapt treatment to the situation being encountered. Not only did I achieve NED status back in 2014, but have been told by numerous pancreatic oncologists and surgical oncologists they consider me cured by Folfirinox.