Day22 -Step2- surgically remove the remaining cancer

  1. 20171206 Day22 -Step2- surgically remove the remaining cancer
    1. After the cancerous activity has been hopefully reduced by the 60-day immunotherapy trial as discussed in Part1,
    2. The team will assess and measure the success of the immunotherapy clinical trial treatments with, I would imagine, a CT scan…
    3. Sometime early January, the surgeon at MDAnderson will remove the cancerous left tonsil and areas to which squamous cell carcinoma has spread (back of the tongue, soft palate and two lymph nodes in the left neck)
    4. Using the more advanced surgical technique is called TORS surgery which first deals with being in a much tighter space the mouth, and being able to remove tissue from different places including the back of the tongue
    5. Each of the cancer survivors stated how difficult this ‘tonsillectomy’ was both in terms of the pain associated with it and the challenge re-learning to swallow in the absence of the tissue removed by the surgery…
    6. At this point, I am expecting to spend four days in the hospital and probably another 6+ days in Houston to be close to medical support…
    7. Once the surgeon has determined how effective the surgery has been, we will proceed to Step3 for, hopefully, proton radiation therapy to clean up the remaining issues…

…a picture of somebody’s left tonsil (not mine) in the process of TORS surgery (from the article above).



Day17 -Step1- shrink the cancer

  1. Day 17 Step1- shrink the cancer
    1. Crank up my immune system to hopefully reduce the amount of cancer in the tumors with a 60 day clinical trial of immunotherapy (here)…with the drug Durvalumab during the period from mid-November to mid-January.
    2. Here is a PBS News Hour segment on immunotherapy with the opening example being the same cancer as I have in my tonsil and two lymph nodes (squamous cell carcinoma).
    3. Here is a video of how this class of checkpoint inhibitors works

  1. Ideally this immunotherapy treatment will shrink the cancer so that the Step2 surgery will not have to be as extensive and destructive to my soft palate and back of tongue which are key parts of the ‘swallow’ functionality. More on that in my next post… Step2

Day12 whatsa ‘checkpoint inhibitor’

  1. 20171126b: whatsa ‘checkpoint inhibitor?’
    1. A definition:
    2. With some temperature measurements (starting today), I am noticing that the temp recorded on the left (cancer) side [back under the tongue close to the left tonsil] is 0.3-0.5 degrees higher than the right side in the same spot. This suggests that there is some increased activity in that area. The one thing that I *don’t* know is if there was a difference *before* the treatment, I just know that there is a difference *now.*
    3. With a picture that puts the ‘checkpoint inhibitor’ mess into a graphic:

Day9 I am the lab rat!

  1. 20171123 Day9 What is a Phase1 Trial?
    1. I frequently refer to my students as “lab rats”… but today, *I* am the ‘lab rat’ in a phase1 trial of two different immunotherapy alternatives…
      1. Here is an infographic that discusses the different phases of clinical trials

  1. And here is my clinical trial at MDAnderson… which, I might suggest is a lot more advanced than just a phase1, but because it includes a non-FDA drug (not my group), it probably has to be placed in the lowest/earliest phase category.
  2. The trials contain a greater health risk, but they are also arguably on the leading edge of research… One of the decisions that I considered with the MDAnderson team is to weigh the trial risks against the temporary and permanent side effects of more traditional treatments…
  3. …this and being kind of a “leading edge” kinda guy in the tech sector now puts me in the “lab rat” category!

Day8 all systems nominal…

  1. 20171122 Day8 All systems are nominal…
    1. Don’t really have any hard results-oriented data, just soft, qualitative stuff post immunotherapy treatment1.
      1. My tonsil is no longer ‘angry’ or sore…
      2. Back of the tongue still feels like there is something stuck back there on the left side, like a piece of nut (I would assume that is actually tumor)
      3. Congestion is still present (clearing my throat frequently), but does not seem as productive or as frequently (and this may be the reason for less soreness)
      4. I feel absolutely normal and all of my systems (as they say in rocketry and space ) are nominal [Aerospace & Engineering: According to plan or design]…
    2. Today’s thermometer reading was the first time being up to and right on 98.6 (I was beginning to think I had a calibration error with my thermometer)
    3. I keep thinking about how I can get a good picture of my tonsil (the ENTs use that scope they stick up your nose, and the radiologist had a professional photographer with special lense and special flash to focus on the tonsil from about a foot outside my mouth… I tried with my phone’s camera, but that did not work at all… I am kinda surprised that my ENT here at home did not ‘take a picture’ of his observations/for his record. I am quite anxious to see what, if any, effect the immunotherapy has had on the size of my tonsil. …I still am tickled by my local ENT asking me “has anyone told you that you have an enlarged left tonsil?” in the same tone as “did anyone tell you that you have a spot on your shirt?”
    4. Thanksgiving Day tomorrow, and I have much to be thankful for on so many dimensions… Thank you, Lord, for your Grace and Blessings on my entire community of Family and Friends. May I be worthy of your gifts… Amen

Day5… HPV caused my cancer… Vaccinate your children!

  1. 20171119b I know what caused *my* cancer. If you have adolescent children you can protect your children from these threats, and reduce the cancer risk that your daughter/son has from this cancer-causing virus…
    1. I mentioned in an earlier blog that my surgeon at MDAnderson was surgery and related techniques for a growing area of cancer… That throat cancer that is P16 positive. I am P16 positive.
      1. P16 is a test done to the biopsy of the tumor (in my case, it was my left tonsil) where positivity shows the presence of the Human Papilloma Virus (HPV) [the *same* HPV that health organizations are recommending you vaccinate your adolescent children]
      2. This means that I was infected with the HPV at some point during my sexual life (which for me started at age 20)
      3. The bad news is that this HPV virus causes cancer in women and men
        1. My diagnosis is “squamous cell carcinoma of oropharynx”
        2. In layman’s terms, this is tonsil cancer and it has spread to the soft palate and the back of my tongue which are all part of the mechanics of swallowing, sneezing, and breathing
        3. After my treatments and surgery to remove the remaining cancer, (where my doctors will have to remove some of the tissue that performs the delicate choreography that we call swallow), I will need to re-learn and adapt my new form to the swallowing process [and this was after early detection of my cancer].
      4. The good news is that the prognosis for a cancer cure is better for P16/HPV positive cancer than with other causal factors like smoking
    2. Sooooo, for boys, the HPV related cancers are like mine, but for girls, the HPV cancer is largely cervical cancer… which is much more frequently deadly. I cannot imagine that any mother or father would fail to do whatever is necessary to remove the risks associated with these cancers for their children… Have them inoculated to prevent the HPV associated cancer risks… today. The HPV Vaccine only works prior to HPV exposure. Let’s learn from experience… Let’s be safe.