Chaos

So much has happened medically and otherwise since my last post, it is hard for me to know where to begin.  Chaos seems to be the theme of my life.  Sometimes, I really wonder how my mind processes everything that is my crazy, insane existence.

As of my last post, I was trying to decide whether I should spend $27,000 for two treatments of an epigenetic drug called Vidaza, that in a preclinical setting had shown an ability to make colorectal cancer cells more susceptible to immunotherapy. I had already decided that at a minimum I would do what Dr. AC originally presented to me as his “crazy” idea – radiation therapy plus two immunotherapy drugs called nivolimab (“nivo”) and ipilimumab (“ipi”). The radiation would be covered by insurance and the nivo and ipi, while not covered by insurance because they are not FDA-approved for colorectal cancer, were being given to me by their manufacturer, Bristol Myers Squibb. The idea was “crazy” because that therapeutic combination has never been done in a colorectal cancer setting, perhaps any setting. I know of three clinical trials for all solid tumors combining radiation with a drug similar to nivo, but certainly not nivo and ipi. Dr. AC himself has administered radiation plus nivo and radiation plus ipi, but never radiation plus nivo and ipi. I knew from my research and speaking to others who have undergone this type of lower dosed and highly targeted radiation as well as those who had taken the nivo and ipi, alone or in combination, that the treatment would likely be tolerable with manageable side effects. Until that point, my metastases had been exclusively in the lung and subcentimeter, making radiation a much riskier proposition. Any target less than one centimeter is difficult for the radiation oncologist to visualize and radiate and radiating any organ, particularly the lungs, can be dangerous. But then in my June scan, I suddenly had an enlarged and likely cancerous lymph node in my pelvis that was larger than one centimeter; there were no vulnerable organs nearby. At no financial cost to me and with little physical risk, Dr. AC’s “crazy” idea, given the absence of any attractive clinical trials, was a no-brainer for me. More

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