Day172 — D-d-d-done

  1. Day172 — D-d-d-done!!
    1. -Praise God for the many blessings and few trials I have endured…
    2. -Started treatments for tonsil cancer caused by the presence of HPV in my body on November 15th
      1. -A Clinical trial of Immunotherapy for 60 days which knocked down the cancerous areas in my tonsil and tongue and lymph nodes in my left neck
      2. -As a result, my Surgery in January required less tissue be removed so the actual damage done to remove was less. Pathologists report was clear margins on all tissues removed. Cancer surrounding two of the three lymph nodes removed was at a level where there was concern that cancer cells were being released into the lymph system, but the third lymph node in the sequence of nodes was cancer free… a good sign the cancer had not spread.
      3. -The final treatment was chemoradiation starting in early March and completing last night shortly after midnight
        1. The chemo part of the regimen was the “gold standard” Cisplatin
          1. A systemic approach to target any cancer cells that may have escaped the surgery into other parts of my body… While nobody suggested this was an issue, it was a precaution based on the reading of the active lymph nodes.
          2. which among the side-effects had nausea, and although not bad (I had no problem “keeping things down” …my ill-at-ease stomach was always sending messages that I really did not want to be drinking my meal replacement shakes…
        2. And the radiation was the newer proton radiation,
          1. A targeted approach to irradiate the areas which had been active with special attention focused on the lymph node area
          2. Proton radiation which is arguably more precise and does less damage than traditional radiation… I have a large area of my neck that looks like an ‘over-roasted turkey” red and itchy, that has peeled one layer already, but not to the level where the skin begins to ‘ooze’ which is the next level of damage, and ulcers in my throat around the irradiated area which make any drinks or food burn and painful (hence the shakes and nothing else)… mitigated by mouth rinses but always present.
        3. The challenges were to keep my weight stable (‘or else’ they would insert a feeding tube). I managed to stabilize at 210 lbs. and my nutritionist was happy…
        4. The last of the six chemo session was Thursday and the last of the 30 radiation treatments was last night… I got to “ring the gong” and “sign the wall” upon my completion… and the feeling was more one of relief than any joy or elation…
      4. Now comes the period of ‘recuperation to the new-normal’… the weeks and months of physical and systems repair. All my oncologists from both MUSC and MDAnderson gave me high numbers (80% and above) for a “cure” for this cancer with equal outcomes for different combinations of procedures… so the objective quickly became how to do the minimal amount of long-term damage (saliva production, for example, is at risk from traditional radiation which kills the salivary glands in the mouth and requires a life of dry mouth, washing all foods down with water, increased issues with mouth cleanliness and tooth decay… saliva is an integral part of many systems in the mouth… My instruction to the radiation oncologist was “I want to be able to spit when I get done!”).
      5. …and now I can head home after six weeks of therapy and start returning to a regular life after this five-month hiatus of cancer treatments… My apologies to the many people and organizations that I have put on hold during this process, I will be picking up the pieces during the next weeks/months with a new vengeance and determination. I have much to accomplish, and this experience has taught me that life and health are fleeting. Finally, my thanks to God for helping me navigate this battle, and to family and to friends and to the community for their wonderful support and compassion… and pray for the many cancer patients that have little hope and little support. They need our prayers far more than I do. Blessings to you all…

Day136 — HPV-related cancers – an MDAnderson Moonshot

  1. Day136 — HPV-related cancers – an MDAnderson Moonshot
    1. My cancer was caused by the HPV virus… I am P16 positive
    2. One of the “Moonshots” at MDAnderson is conquering HPV-related cancers… one of the biggest challenges is to the community as a whole working on prevention…
    3. “HPV is a group of more than 150 related viruses. The lifetime risk of acquiring an HPV infection is 75–80%. While certain forms of the virus cause common skin warts (papillomas), others can lead to cancer. Each year hundreds of thousands of men and women around the globe are diagnosed with HPV-related cancers, and in many areas more than half of those patients will die.”
    4. Here is their Moonshot page: https://www.mdanderson.org/cancermoonshots/cancer-types/HPV_related_cancers.html

Day132 — Getting all the Chemo and Radiation Side Effects Under Control

  1. Day132 — Getting all the Chemo and Radiation Side Effects Under Control
    1. -The process of irradiating the regions where the HNSCC cancer has been removed (targeted treatment), and tracking down and killing any escaped cells that might try to make a home elsewhere in my body (systemic treatment) has called for a combination of simultaneous chemotherapy and radiation therapy frequently called chemo-radiation.
    2. -Well, It has been a bumpy first few weeks… Currently, I am three weeks into a six-week protocol of chemo-radiation.
      1. Chemo has been bumpy working to mitigate the “nausea” side effect. While it was never bad, it was just a persistent ill-ease in the stomach. The Oncologist had maintained that the process was one of treating the symptoms and getting control… Which was accomplished this past week with an additional steroid that calmed the stomach…
      2. Radiation, even though it is proton radiation, reeks a little havoc with the irradiated areas develops open sores (mucositis) and secretes a thick mucus. While there are treatments, none does more than reduce some of the impact. It looks like this symptom will last the duration.
      3. With the tinge of nausea and the mucuitis, about the only food that slides down are ‘shakes. Even chewed food feels scratchy like it might further irritate the throat linings. Soooo, I am pretty much on a liquid diet to meet my dietary needs of 2200 calories and 120 grams of protein per day to maintain my weight. Food has just become another medication to get me to the finish line… Nothing smells or tastes appetizing. I just line up the 6-7 shakes a day to make my numbers
      4. One follow-up appointment that I had today was with my audiologist. One of the more severe side effects of Cisplatin (chemo) is a chance of hearing loss. Even though Cisplatin is considered the “gold standard” for my specific cancer, the Oncologist at MUSC had decided not to recommend the chemo-base therapy because of this side effect, but Dr. Mott and I decided to monitor my hearing to detect any change or loss of function. Today’s tests showed no hearing loss or change.
    3. As much as I thought that this adventure was going to be a part-time task, all the appointments, treatments, medications, feedings, applications, swishes, and management are a full-time endeavor… crowding out much of what I want to get accomplished on the education and telecom/technology frontiers. My apologies for letting these efforts lag. I am quite anxious to be past this stage and back to my missions in the community!!

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…