Day116 — Nota Bene- the purpose for the readers of these posts is twofold-

  1. Day116 — Nota Bene- the purpose for the readers of these posts is twofold-
    1. -First: the incidence of tonsil and throat cancer (frequently called Head and Neck Squamous Cell Carcinoma HNSCC) is growing among more mature men:
      1. “HNSCC is the seventh most common cancer worldwide. Approximately 600,000 new cases are diagnosed each year, including about 50,000 in the United States. HNSCC occurs most often in men in their 50s or 60s, although the incidence among younger individuals is increasing.” Sooo, if you or a loved one is experiencing frequent persistent sore throats, go to your ENT and have him/her check out your throat (the give away for me was an enlarged left tonsil… then the spot on the CT scan).
    2. -Second: This cancer in men, and virtually all incidents of cervical cancer in women is *caused* by the HPV virus… for which there is a vaccine that is only beneficial if it is received before your children are sexually active (once you get the virus, it lives in the body until death)…
      1. “studies have shown that infection with certain strains of human papillomavirus (HPV) is linked to the development of HNSCC. HPV infection accounts for the increasing incidence of HNSCC in younger people.”
      2. “Virtually all cases of cervical cancer are caused by specific types of human papillomavirus (HPV). There are more than 100 types of HPV, of which more than 40 can be sexually transmitted. Among these, about 15 are considered to be cancer-causing, or high-risk, types. Two of these high-risk types, HPV-16 and HPV-18, cause about 70% of cervical cancers worldwide. HPV infection is very common, but it usually goes away on its own. Persistent HPV infections, however, can cause cellular abnormalities that sometimes develop into cervical cancer if not treated.”
      3. “Cervical cancer – once one of the most common cancers affecting U.S. women – now ranks 14th in frequency. Because precancerous lesions found by Pap smears can be treated and cured before they develop into cancer, and because cervical cancer is often detected before it becomes advanced, the incidence and death rates for this disease are relatively low.”
      4. “The FDA has approved two vaccines, Gardasil® and Cervarix®, which are highly effective in preventing persistent infections with HPV types 16 and 18, the two high-risk HPV types that cause the majority of cervical cancers. Gardasil also protects against infection with HPV types 6 and 11, which cause about 90% of genital warts. The vaccine is based on technology developed by NIH scientists and others, whose work laid the foundation for the production of HPV “virus-like particles,” or VLPs. These non-infectious agents trigger a robust antibody response that prevents persistent infection with the HPV type from which the VLP is derived. Gardasil is a mixture of VLPs for HPV types 6, 11, 16, and 18, and Cervarix is a mixture of VLPs for HPV types 16 and 18. The vaccines are approved for use in girls and young women for the prevention of cervical cancer but have been proven effective only if given before infection.”
      5. There still remains controversy about these vaccines. Here is a detailed look at the issues.
    3. Soooo, be proactive about these HPV-caused cancers. See your doctor if you are experiencing symptoms for men, and have the cervical tests performed for women, and strongly consider having your children inoculated (vaccinated) to prevent the more dangerous strains of HPV… You can *do* something about this cancer both as a precaution and as early detection!! What else can I say/do?
    4. “Quoted” materials come from various pages on the National Institutes for Health website…

Day115 — some parts are just harder than others

  1. Day115 — some parts are just harder than others
    1. -Yesterday:
      1. the nutritionist gave me my marching orders: 2200-2500 calories per day to maintain my weight! …or else… if I lose 10% of my bodyweight, that puts me in contention for a feeding tube (see Day111). I thought the feeding tube was a threat then, and I know that it is a threat now…
      2. The chemo nurse made some suggestions yesterday that only experience could have provided. The day before the clinical pharmacist had instructed me to wait for two days as the anti-nausea meds which were blended into my chemo cocktail (along with some steroids) wore off. She stated that I would have a better indicator or my need for the two prescriptions she phoned over to the pharmacy. Well, yesterday the Chemo nurse recommended that I start taking one of the two anti-nausea medications *that night* for the next *two days*, and *then taper myself off* them to the point where my nausea was still under control. He stated that: if you get behind on nausea it is quite difficult to get it back under control.
      3. Well, I am 24 hours into my 48 hours under medication and I just finished the first real test of whether I am nauseated… My breakfast only accounted for 350 calories, and lunch is usually my main meal, so I figured I had to do some real caloric damage for lunch. So I went to one of the better burger places and got one of their signature burgers and fries and the broccoli slaw [I had to have something healthy!] for a total of 1445 calories… yummmm! that makes me only 405 calories short for dinner which I was on track for a light dinner after my 8:30pm radiation therapy… I can’t believe that I am struggling to make the minimum from my nutritionist… and I still feel great! What’s it going to be like when I feel like dung…
      4. Soooo, I took the nutritionist’s recommended list with me to the grocery to buy lots of the high fat, high sugar stuff that will keep those pounds from falling off like after surgery.
      5. Some parts of this battle are obviously difficult, and other parts are not quite so obvious… I spoke with one of my cancer survivors this morning (read: *before* lunch] who told me that he was debilitatingly nauseated starting day two and had the feeding tube inserted for seven months… all of a sudden the suggestions from the nutritionist and the gastroenterologist had a much more meaning!! Tomorrow will be day two post-chemo… We will see what the Houston sun brings… hopefully, I will feel like having another burger!

Day113 — Simultaneous chemo therapy weakens and kills any cancer cells that escaped the surgery – the other half of Step3

  1. Day113 — Simultaneous chemotherapy weakens and kills any cancer cells that escaped the surgery
    1. The Lymph nodes that were removed (2) during my January surgery could have been throwing off SCC cells into the lymphatic system that could transport those cells to other parts of my body.
    2. The Proton radiation is focused on the areas around those lymph nodes (which have been removed) and the area of the primary cancer e.g. the left tonsil and the back of the tongue on the left side.
    3. The combination of a lower dose chemotherapy “sets up” the cancer cells by weakening these cells, making them more susceptible to radiation treatment; and the radiation, even though it is highly focused on one area of my body, actually awakens white blood cell attacks on any other cancer cells in other parts of my body… This combination of both chemo and radiation is frequently conjoined and called chemoradiation therapy.
    4. The chemo drug, Cisplatin, is frequently referred to as the ‘gold standard’ for these types of head and neck cancers. But while it is highly effective, it does have known side effects, the most prevalent of which is nausea… so part of the cocktail that is fed into my body intravenously is an anti-nausea drug, and I now have two more prescriptions of anti-nausea medications. In addition to this, the team tells me if these measures don’t control nausea, then they can move to more effect anti-nausea treatment.
    5. And there are both weekly meetings with chemo and radiation oncologists, and weekly blood tests and less frequent hearing tests to ensure the detection and minimization of side effects. If the markers move, then adjustments to the chemo protocol can be made. I have 54 appointments between now and the end of my treatment… I am one busy patient!!
    6. Soooo, tomorrow the chemo part of the chemoradiation begins, as did the radiation part of Step3 last night. We will see what lies ahead. One thing that I am quite assured about is the confidence that I have in this plan to rid my body of this scourge. Thirty-four days and counting…

Day112 — The Proton Therapy part of the treatment for Step3

  1. Day112 — The Proton Therapy part of the treatment for Step3
    1. The physics and the reason I pushed for proton therapy (MDAnderson video)
    2. “Imagine a 196-ton, cancer-killing machine that can target a patient’s tumor with sub-millimeter precision while sparing nearby healthy tissues and minimizing side effects. In its most simple terms, that’s proton therapy.”
    3. Tonight starts this treatment… where man meets machine… and gets basked with protons

Day111 — Step3 a combination of proton radiation and chemotherapy starts tomorrow

  1. Day111 — Step3 a combination of proton radiation and chemotherapy starts tomorrow to clean up whatever cancer cells might remain for my HNSCC
    1. -Today was spent with the
      1. -Audiologist conducted a hearing test as a pre-chemotherapy benchmark so that any tests both during and after radiation and chemo therapies.
      2. Gastroenterology described the possibility of having to insert a feeding tube if I do not maintain my weight… I looked at it more for motivation to keep eating the levels my nutritionist will recommend (total protein and calories) than a big possibility.
      3. ORN (Osteoradionecrosis) Study (pre, during, post) MRIs. I signed up to allow a research study to collect data on my radiation’s impact on one of the more serious possible side effects, the death of part(s) of the jawbone. Research needs both side effects, ORN and Non-ORN, to learn the likelihood of side effects for the next HNSCC cancer patients. We patients need to contribute to the research for the future advances in the treatment and defeat of cancer.
    2. Tomorrow is
      1. Collecting of the dental stent that will hold my upper and lower teeth in the same position so the radiation will strike the exact same radiation targets every day
      2. First proton radiation treatment at 11:30pm… That device is *busy* so I get the last appointment time (let’s call it midnight)
    3. Wednesday starts the
      1. supplementary chemotherapy protocol… ideally, the chemo will weaken any remaining cancer cells (after the successful surgery mid-January… Step2) so that the radiation can kill all the remaining cells
      2. … the first day of my intensive prevention of mouth/throat side effects:
        1. Brushing after all meals
        2. Swishing with baking soda solution 6x per day to clean and adjust the pH in my mouth while reducing the sores and thick mucus that happens during radiation
        3. Daily fluoride treatments for the rest of my days…
      3. The first in-treatment meeting with my radiation oncologist
    4. Thursday is appointments to establish my protein and calorie intake with the nutritionist and adjustments to the radiation position with the proton therapy team…
    5. One busy week… one down and only five more to go!!

Day102 — two different visits: swallow evaluation and preparation for Step3- radiation and chemotherapy

  1. Day102 — two different visits: swallow evaluation and preparation for Step3 radiation and chemotherapy
    1. -Two weeks ago: the swallow instructions/tests are the same while sitting perched in front of the x-ray machine: ‘swallow this’….or ‘Chew and swallow this.’ Then they assess the video x-ray of the swallow process with my recently reconfigured tongue, tonsil, soft palate. They have done the same protocol twice before, so they have a baseline for the exact physiology of my swallow. The results are good for someone with the kind of recent surgery that removes some of the intricate parts of the swallow choreography that is the human swallow (as a systems guy, the swallow controls two critical inputs to the human body, it inputs the foods and liquids required and stops the input of air (when the two get confused you aspirate food into the windpipe… not good!)
      1. Here is a video of my post-TORS surgery swallow… It wasn’t this good immediately after surgery, but had improved markedly during the days before [my biggest food-based challenge had been a meatloaf sandwich two days before… the meatloaf was easy, the bread, even soaked in gravy, was difficult to swallow]. 

      2. And here is a review of the swallow outcomes after TORS surgery where Dr. Hutcheson (lead author) reviews the data.
    2. -This past week: was the preparation for Step3, a course of radiation and chemotherapy designed to eradicate any remaining cancer cells that remain. This process included:
      1. Education on what my tasks are to minimize the side effects of this treatment… it is an extensive list that starts with the obvious drink enough fluids and eat enough food, then moves to the less obvious brush, floss and rinse the mouth out with a baking soda solution to get the mouth back to the right pH (alkaline and not acidic), and many many more tasks (I am in the process of creating a daily chart that I will publish to this blog when it is finished)
      2. A team of four MDAnderson radiation oncologists including Dr Rosenthal put the scope up my nose to inspect the back of my throat to collaborate on the regions to be irradiated
      3. I was whisked away to “simulation” where they ‘set me up’ for the radiation process. I have a spine curvature that makes it quite impossible to lie flat on my back, so the team (all 6) worked to get my body elevated and aligned so that my important parts were precisely in place so that they could then put a custom fitted ‘mask’ over my face and throat and bolt it to the table so that my head and neck would be in exactly the correct and same position for each radiation treatment [don’t want to miss any important targets, nor do I want to irradiate any unnecessary parts]. They marked up my torso with alignment markings… and I will start the radiation treatment March 6 at 11:30pm [the proton therapy equipment is in high demand, and I am at the end of the line!]…
      4. During these processes, I was asked by the research arm of MDAnderson if I might be a candidate for a study of blood flow impact to the jaw (osteoradionecrosis (ORN) of the jaw is one of the most severe chronic side effects of RT to the head and neck region). This will require MRI scans before, during and after the radiation treatment. One of the reasons that I selected MDAnderson is because of their research, so I am now a part of this study. Any small contribution to the battle against this cancer and the improvement of the outcomes from the treatments makes the inconvenience of a thousand mile journey less taxing.

Day77 — Feeling better every day

  1. Day77 Feeling better every day
    1. -Now that I am back at home, my commitment to faster recuperation is that I leave myself time every afternoon for a nap… Well, yesterday I kept extending my afternoon nap until well into the evening… then became sleepy during the State of the Union and slept til 9am this morning. This was probably the most sleep in 24 hours that I have had in a long time… I chalk it up to recovering from the insult of surgery… but my body definitely needed it.
    2. And yesterday I had my first successful taste of real food. I had the staff at Frankie Bones toss their She-Crab Bisque into the blender… My was that good. The only ‘meals’ that I have been having are those ‘meal replacement’ shakes that try to smash a meal’s worth of nutrients into 10 or 12 ounces of chocolate or strawberry liquid. They do get old in a hurry… but a little low-country crab soup was a welcome departure…

  1. And I now have an industrial blender where I can make smoothies and other creative stuff blended to a point where it slides down easily, where I don’t have to chew or manipulate the content with much tongue action…
  2. Soooo, now being two weeks after surgery, I am still on liquids, but venturing into liquids with new content, and still sleeping and recuperating… getting ready for Step3: a course of radiation to finish the job of the immunotherapy, and surgery. At this point, even though there is still pain with the tonsil and tongue, and a long scar where the lymph nodes used to be, I am quite happy that I am on the downhill part of this process, and immensely thankful for all the love and support of my friends and family. Thank you all again and again!