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What should I expect the end to be like?

58HarleySportsterman's picture

Well, after a December 23rd, 2016 diagnosis of stage four Sqaumous Cell Carcinoma of the right base of tongue, inner tonsil, a tumor attached to the right parotid gland and also wrapped three quarters of the way around the right carotid artery, and into 32-lymph nodes in the right side of the jaw, mycancer journey began. Once close family member, who had battled neck cancer himself forewarned us, "Get ready for a wild ride down into the rabbit hole, because things are going to start moving real fast." He wasn't joking!

The beginning of January 2017 brought with it 40-treatments of radiation in conjunction of 9-treatments of Erbitux immunotherapy since I wasn't a candidate for chemotherapy due to my kidney levels being out of wack. Unfortunately, even though my post treatment PET scan (nine weeks out from the last dose of radiation) showed a reletively clean (negative) result, my cancer wasn't completely gone, as would be proven three weeks later with the positive results from biopsy test of the tongue. Then the arguement insued between my medical oncologist and Blue Cross Blue Shield, my health care provider. Even though the oncologist recommended I be put on an Opdivo immunotherapy treatment program immediately since my body (kidneys) would not tolerate the chemotherapy drugs, BCBS insisted that I must first have either a "chemo intolerance" or a "chemo failure" before they would approve payment for the much much more expensive Opdivo drug. Weeks passed without any treatment whatsoever while the doctor and health care provider argued back and forth, neither side willing to back down and concede to the other, all the while jeopardizing my health by allowing the SCC to continue to grow and spread unchecked. Finally, i somehow suddenly became a candidate for chemotherapy treatments according to my medical oncologist and I was given a huge cocktail of Erbitux, Cisplatin, and %FU in a "at home" 46-hours dose in September, 2017 that almost killed me 43-hours into the dose and landed me in the hospital for seventeen days. Four days of which I was lying in my deathbed according to the doctors, until I miraculously awakened from my semi-comotose state late into the fourth day. Having gotten their "chemo intolerance" result, BCBS finally agreed to pay for the two year immunotherapy program using Opdivo that my oncologist had originally wanted to place me on.

Unfortunately, my cancer broke through the immunotherapy treatments 12-14 months into the two year treatment program and reared its ugly head. This time it was back with a vengeance! I was sent to Moffitt Cancer Center in Tampa Florida for a second opinion, and to see if they had any clinical trail study programs going on at the time that would fit my cancer. We were told that none were available to me, and that they could do nothing more for me than what my local medical and radiation oncolist had already done to treat my cancer. They went on to tell me to go home and enjoy the six months, to possibly a year that I have to live before the cancer ends my life at the age of 62-63. WOW!!! Certainly not what I was expecting to hear from Moffitt, especially since my stage four SCC is HPV16 Positive, and everyone along the way had been saying what I have is a very "curable" cancer, and now they're all sending me home to die! All except my local radiation oncologist. Even my ENT took us in at my last visit a few weeks ago for the "End of Life Consultation" to prepare my wife and I for my imminent death. Yet my radiation oncologist wants to try and reirradiate me with low level doses of radiation, twice per day Monday thru Friday for three weeks, and then stop for a week to see how my body takes it and how the cancer reacts to it. Not in an attempt tocure me of my cancer (apparently thereis no cure for this very rare and aggressive cancer that has been able to beat everything they have throw at it. Oh, and readdressing chemotherapy is off the table since when I ended up in the hospital September of 2017 and almost died, well it destroyed my kidneys, causing me not only to never be able to do chemo again, but also never to be able to have the contrast needed when doing PET scans, etc. to see where the cancer is and how big the tumor(s) has grown. All we can hope for now, is that the radiation treatments buy me a little more quality time before I become sickly and die.

So my question to those whom have experienced this type of cancer firsthand through a family member or friend that passed, "What should I expect the end days to be like, and how should I most likely end up dying from this cancer? My ENT says that many times it finally matastazises into the arteries and causes a fatal "blowout" in which the patient suddenly and quickly bleeds to death. He went on to tell us that although it will be quite messy and tramatizing for the wife, etc. to see, that it is really a peaceful way for me to pass, and that I won't suffer. Is this typically how it ends for patients like me, or are there other things to expect in how I go? I'm hopeful that I can remain at home to the end with my wife and Boston Terrier, Abby, and at the place where we live and work and love so much, the trailhead and campground we manage for the state of Florida.



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