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.
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  1. 20171118 Day3 coming back from Biloxi… Nov17
    1. Qualitative comments/observations post first immunotherapy treatment
      1. Day2 and Day3 notices at night that I was almost “snoring” which kinda suggests that the mechanics of snoring has been ‘loosened up’ by this treatment. I will have to study the physiology and mechanics of snoring and see if my tonsil or soft palate (both were engaged with cancer) are part of the snoring process… here are some internet quotes:
        1. “snoring is the result of the relaxation of the uvula and soft palate. These tissues can relax enough to partially block the airway, resulting in irregular airflow and vibrations.”
        2. “The tonsils are clusters of lymphoid tissue in the back of the throat while the adenoids are a similar mound of tissue in the back of the nose. Although less commonly a problem in adults, some adults can receive excellent resolution of snoring through removal of enlarged tonsils and/or adenoids.”…
        3. maybe “snoring” is progress? [I don’t think I have ever snored before]
      2. The ‘raspy-ness’ of my voice is different. I would state that it is a higher pitch (greater vibration frequency)… I don’t know if anybody else can hear this raspiness, but I notice it.
      3. My general throat soreness is less… still there, but just a notch less
      4. I have had none of the side effects mentioned as possible (a long list including diarrhea, constipation, nausea…). I am just hoping that those little monoclonal antibody buddies are doing their job.
    2. Found the clinical trial summary page for my trial (CIAO acronym) with lots of details that flesh out this trial
    3. Covered the 600+/- miles from Biloxi and made it back to HHI by early evening Friday. With all the events of the past week, it seems like I have been gone for quite a while even if it was only 5 days (four of which were mostly spent driving to Houston and back). Hopefully now that my schedule is both more defined and a little further into the future, I will be able to schedule at preferred lodging and get some decent flight options… which will make flying much more convenient (but no overnights in Biloxi, MS… which I will not miss).
    4. Happy Birthday Dad!! [we lost him four years ago]
  1. 20171116b Summary of Day2: learning that those little conditions that have not troubled me for 40+ spook all the doctors who don’t know if it will interact with any of the treatments:
    1. In my early 20’s I had back and joint stiffness that wound up being a condition that is in the same family as rheumatoid arthritis… It is not very common and the joint pain has not troubled me since my 30s
    2. Had a session with a RHEUMATOLOGist… she listened to my story and the diagnosis from 45 years ago, and kinda decided that she wanted to confirm/corroborate/test the impact on my joints and spine, so I spent another day getting poked and prodded (blood test and x-rays of my pelvis and lower back)
    3. I finally managed to escape about 12:15 after a full morning, and actually found a shortcut to my car [parking2] (I could swear that the person who designed MDAnderson’s layout of buildings had a minor in maze construction… almost all my appointments are on the 10th floor of the “main” building by elevator “A”… but every now and again they schedule some of the visits in the “Mays” clinic which is probably more than half a mile from the usual places using the “skywalks” that operate at about floor 3…
    4. I am beginning to suspect that one of my physicians thinks that he can sneak in a personal workout for this fat old geek by walking me halfway around Houston in 20-minute spints (when they did my vital signs today, my heart rate was 92 instead of the normal 60)… I need to see if my smartwatch or phone has been recording my steps/heart rate…
    5. Sooooo, I am sitting in scenic Biloxi MS (one of the challenges with driving back and forth to Houston is ‘where to stop’ for the night to break the 1050 mile drive into manageable driving days)… I made a reservation at one of the cheaper hotels in Biloxi… Harrahs! …one thing for sure is: they don’t give you a Gulf view for the $60/nite single!! I thought it was going to be a quiet beachfront spot where I could walk the beach tomorrow morning… Well, no. It’s a big casino trap where there is probably no door to the south (“which way to the beach?”)… I am still looking for some place that serves breakfast… I will probably have to resort to scenic downtown Biloxi for that one…
  1. 20171115d summary of day: first day of immunotherapy: Nov15
    1. OK… Chatted with the speech therapist who suggested that
      1. I was not here to talk to her about speech but about swallow. We had an extensive show and tell of
      2. the mechanics of swallow with two pieces that have some cancer spread (the base of the tongue and the soft palate.
      3. The surgery scheduled for mid-January (after the immunotherapy has reduced the tumor and spread to make surgery more effective [hopefully]) will require some chiseling away at the base of the tongue and soft palate to ensure that the surgeon has cleared the cancer from those areas.
      4. Then it will be her job to get me back to a functional swallow and to retrain the remaining muscle to perform all the choreography that is the human swallow.
      5. We actually viewed the video of my swallow functionality which said was quite normal…
    2. Lots of blood tests (a general one and the ‘research’ one that not only checks other tests, but also gets saved (anonymized) for future research, and a saliva gargle (didn’t really get a good explanation for that one)
    3. Visits with the
      1. oncologist who gave another general overview and
      2. signed all the paperwork for the trial (I am in the single drug group and
    4. the research nurse to review all
      1. the possible (probable) side effects and the prohibitions (no wine) and
      2. drink 2 liters of fluids excluding caffeinated beverages…
      3. the first treatment was today (day1), next treatment is Dec13 (day30), and then surgery on or about day60 to remove whatever remains… beyond that will be determined by the effectiveness of the surgery
    5. Immunotherapy treatment was similar to regular chemo… put me in a room and plugged me into a drip for an hour, and then observed for an hour to see if I turned into a pumpkin… felt fine through the whole process…
    6. Stuffed myself with a substantial turkey dinner [Turkey Tuesday??] on the way back to the hotel…
    7. Called Mom to let her know that all had gone according to plan… That was my day… Started at 7am and ended at about 5:15pm

First Treatment starts next week…

  1. 20171109 next Wednesday I start my Immuno-Therapy Trial at MD Anderson… Nov09
    1. For those of you who want some detail, this summary will put you to sleep!! …and here is some detail of the drug that is common to both groups…
    2. I go in for two Immuno-therapy treatments:
      1. the first on day1 (next Wednesday), with a little time for observation to be sure I don’t have some adverse reaction…
      2. the second on day30 to, hopefully, shrink the tumors and halt the spread…
    3. I would suspect that they will be measuring the size and placement of the spots to suggest the drug’s efficacy up to day60… and
    4. on day60 we proceed with the surgical solution on whatever is left (read: a big tonsillectomy on a 60-something [here’s one observation from a medical website: “The recovery from traditional surgery can cause pain and difficulty swallowing for up to 10 days. Dahl said one patient told her ‘it’s worse than childbirth without anesthesia.’”])…
    5. After the Immuno-Therapy and the surgery comes the Proton Therapy… or whatever the team thinks is most appropriate treatment(s)for whatever disease remains…

The pieces continue to fall into place for more advanced treatment of my throat cancer… first it was the availability of an immunotherapy clinical trial that will precede a surgery that will remove the tonsil tumor and lymph nodes that are active, and now I am hearing that Medicare will cover the newer Proton Therapy that uses a more advanced radiation to finish what immunotherapy and surgery will start… with less damage than traditional radiation therapy… Here is MD Anderson’s Proton Therapy page that has an explanatory video that can describe this therapy much better than I might…

  1. 20171106 BlogPost JHLundin …a good prognosis but a difficult diagnosis for JHLundin part3… Visit to MDAnderson Cancer Center in Houston last week: diagnosis: Squamous cell carcinoma of oropharynx. November 6, 2017.
    1. Visit with Dr Gross who is focused on precisely the cancer that I have, about surgical and immunotherapy options for the best outcome (both with eradicating my cancer and with limiting the side effects from the treatments)
    2. CT scan to see precisely where the cancer is
    3. Visit with Dr Rosenthal head of the Head and Neck Radiation Oncology about radiation options post surgery
    4. Visit with Dr Chambers on the impact on my teeth to reduce the risks associated with radiation and surgery
    5. Visit with Dr Mott oncologist on the issues surrounding immunotherapy and the clinical trial that is currently in place that is targeted at exactly the cancer and cause that is my cancer.
    6. Signed the documents for the trial
      1. Two immunotherapy treatments that are one month apart Day 1 and Day 30, with an of the impact for the trial data collection and for assessment of the surgery and radiation treatments to follow
      2. surgery on Day 60
      3. Further treatments TBD (radiation//chemo)
    7. Had biopsy of tonsil taken before departure
    8. Return next week for first treatment
    9. This is precisely why I made the additional trip to Houston
  1. 20171025 to Charleston and return October 25, 2017
    1. Why is it that the path from A to B is never a straight line?
      1. The suggested therapy at MUSC is a traditional combination of surgery and radiation
        1. It will almost assuredly kill the cancer
        2. It will also have the traditional temporary and permanent side effects of a seven-week course of radiation therapy…
      2. At the suggestion of one cancer survivor, I started investigating MDAnderson, arguably the best cancer treatment facility in the country/world
        1. Dr Neil Gross at MDAnderson returned my call this morning and we discussed where I was… based on an article he had published a little more than a year ago about some of the surgical techniques he had been pioneering (TORS) to mitigate the side effects of traditional treatment (chemo, surgery, radiation) and improve outcomes. During the conversation, he put two more options on the treatment table (they are just ‘possibilities’ at this point):
          1. Immunotherapy: a technique to kinda supercharge the body’s own immune system to more aggressively attacking the cancer… but the process of boosting the immune system and targeting cancer cells is not nearly as toxic as the traditional chemotherapy that chemically attacks the cancer cells…   
          2. Proton therapy which uses a particle beam that is able to target and provide the optimal effect at a specified distance/depth which differs from traditional radiation which does damage both entering the body and leaving the body in addition to doing the targeted damage to the tumor itself.
          3. Both do less collateral damage and change the outcomes (i.e. radiation damages the salivary glands which produce the saliva that among many functions lubricates the food we eat and helps clean our teeth… Proton therapy would not damage the salivary glands)
          4. And both have clinical trials to find and treat patients within trial parameters
        2. This afternoon, I discussed this with Dr Neskey at MUSC.
          1. He knows of Dr Gross and uses his TORS surgery technique…
          2. He thought that I should check into the MDAnderson techniques… soooo, I don’t consider it a ‘second opinion’…
          3. I look at it as checking into a more advanced, but not nearly as proven a set of techniques that could possibly save a few of my teeth and lots of salivary glands… and a lot more… and a lot less.
          4. I put the process at MUSC on hold until I complete this research
        3. I now have an appointment for October 30- November 1 at MDAnderson in Houston, TX for up to a week of meeting and tests to explore these therapies… at this point, I am thinking that I will drive to Houston and find a convenient place to stay until I can learn enough to make an informed decision…
        4. Thanks Dave for remaining flexible in this last minute pursuit of a better solution… Health and happiness to you all,  J
  1. JHLundin prognosis October 12, 2017 (this is being posted on November 6, 2017, after my exploratory visit to MDAnderson last week).
    1. Recently found out that I will need to prepare and undergo two surgeries and seven weeks of radiation treatment to contain/control/cure tonsil cancer. This means treatments at MUSC every day, Monday through Friday plus the time to prepare and recover. That is a big block of time in a busy life! [update: I have since gone to MDAnderson and have a new treatment plan discussed in part3 of these blogs]
    2. The good news is:
      1. It is a P-16 positive cancer which improves the likelihood of a cure (if you are curious, you will have to do the research…)
      2. MUSC’s head & throat cancer facility is ranked #11 in the nation for ENT and #42 for cancer
      3. All the major specialists (surgeon, radiologist, oncologist) are talking about an 80% chance of cure (and in my reasoning, there is no 90-100% certainty, so this is as good as it gets)
      4. MUSC has a Hope Lodge where I can most probably reside while I am undergoing daily treatments in Charleston
    3. On the downside, there are no ‘good’ options, only ‘less bad’ options… and they have prepared me for all the bad stuff that can happen… and the process is not pretty. With radiation, there are functions that are permanently damaged and that never return… so the issues are
      1. Swallow and voice damage
      2. Muscle and bone damage
      3. Tooth abscess risk
      4. Fatigue, loss of saliva, taste, hearing… and much more
    4. Soooo, it sounds like this is about a two month+ process (prep for treatment, seven weeks of treatment, and the assurance that once treatment stops, there are still effects from the treatment for weeks). I will know more as I proceed in the process. I will be complying with the MUSC Tumor Board’s recommendations that will happen Monday (October 16th)… and will last from this week until about late December.
    5. And that means that I have to set some things down to open my schedule to be in Charleston pretty much all week every week and deal with the fatigue and other effects that such an insult to my system will cause:

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