Chapters

Alternatives to radiation and chemotherapy

Do nothing

In a July 18, 2019 post to “Andy’s Cancer Journey Blog”, Andy Krauska referred to a process whereby removal of a primary tumor may stimulate the growth of metastatic secondary tumors via “angiogenesis”. The following quote is from an article that also refers to this process. Andy has decided not to go for radiation or chemo yet, preferring “active surveillance” as his mode of treatment. I’ve asked my radiation oncologist for his thoughts about this.

One of the most mysterious aspects of angiogenesis is that a primary tumor will often secrete a substance that inhibits angiogenesis around secondary metastases. In this case, surgical removal of the primary tumor may stimulate growth of its metastatic secondary tumors. Several natural proteins that inhibit angiogenesis (e.g., angiogenin and endostatin) or antagonists of the VEGF receptor have excited much interest as therapeutic agents since they might be useful against many kinds of tumors. While new blood vessels are constantly forming during embryonic development, few form normally in adults; thus a specific inhibitor of angiogenesis might have few adverse side effects.

Molecular Cell Biology. 4th edition, New York: W. H. Freeman; 2000, Section 24.1 Tumor Cells and the Onset of Cancer

Immunotherapy Options

One more thing. I’ve only just clued into the fact that Cetuximab, a drug that has been tested in head-to-head trials against Cisplatin in RTOG 1016, De-ESCALaTE, and TROG 12.01, is a “targeted antibody” immunotherapy option. So far, RTOG 1016 and De-ESCALaTE have shown that, for people like me, Cetuximab is not as effective as Cisplatin. For people with compromised renal systems, hearing difficulties, or neuropathy, Cetuximab may be a better option. See here for a few more details.

There are [in the United States], currently three approved immunotherapy options for head and neck cancer.

Targeted Antibodies

Cetuximab (Erbitux®): a monoclonal antibody that targets the EGFR pathway; approved for subsets of patients with advanced head and neck cancer, including as a first-line therapy

Immunomodulators

Nivolumab (Opdivo®): a checkpoint inhibitor that targets the PD-1/PD-L1 pathway; approved for subsets of patients with advanced head and neck cancer

Pembrolizumab (Keytruda®): a checkpoint inhibitor that targets the PD-1/PD-L1 pathway; approved for subsets of patients with advanced head and neck cancer

Cancer Research Institute

Second meeting with radiation oncologist

At my request, my wife and I met my radiation oncologist (RO) at the Victoria Cancer Clinic on Friday July 12, 2019 to talk about the following.

  • From a prognosis perspective, am I Stage I or II?
  • What do you think of the idea of me not going with chemoradiation therapy (CRT), considering my preference for quality over quantity of life?
  • How would you change your current 5×7 radiation therapy (RT) planning if I don’t go with chemo?  Going with an accelerated, 6×6, schedule?  How would a change affect me?
  • What would the next course of action be if my 12-week PET scan has positive hits for cancer, and biopsies showed those to be true, not false-positives?  Can I have RT or CRT again?
  • How do I get it on record that agency doctors and staff may give my wife any information that they would give me, whenever she asks for that information?

Questions, and answers

Q: From a prognosis perspective, am I Stage I or II?

A: At T3 N1 M0, I’m Stage II using Edition 8 of the AJCC guidelines for HPV-positive oropharyngeal cancer (OPC).

Q: What do you think of the idea of me not going with chemoradiation therapy (CRT), considering my preference for quality over quantity of life?

A: Although the standard treatment for my situation is high-dose Cisplatin chemoradiation, and although I am an “ideal” candidate (because I’m early-stage and fairly fit), he completely understands my reluctance to take chemo. He says that:

  • the chemo might increase my overall survival rate 8% from roughly 85% to 93%, but that it might not increase it at all
  • chemo has a significant hit on quality of life, not just in the short term, but potentially in the long-term as well
  • RT is very effective on HPV-positive OPC

Q: How would you change your current 5×7 radiation therapy (RT) planning if I don’t go with chemo?  Going with an accelerated, 6×6, schedule?  How would a change affect me?

A: There are, actually, a number of “alternate” or “accelerated” schedules that could be used. These are just three.

  • Compared to 35 doses over 7 weeks (i.e. 5×7), giving 36 doses over 6 weeks (i.e. 6×6) improves local control of the tumor, and reduces the chance of it returning – but it also increases the side effects.
  • He suggests that we do 6×6 to start with, and if it looks like toxicity is a bigger problem than we’d like it to be, we could reduce to 5×7
  • Alternatively, we could start at 5×7, and if things look OK, increase to 6×6

Q: What would the next course of action be if my 12-week PET scan has positive hits for cancer, and biopsies showed those to be true, not false-positives?  Can I have RT or CRT again?

A: A few things would happen.

  1. If the PET scan showed any type of cancer other than OPC, then they’d treat that as new cancer.
  2. If the PET scan showed recurrences of the OPC, RT and CRT would not be options; surgery would be the only option.
  3. After the 1st PET scan, wait a bit and then do a 2nd PET scan to see if the 12-week one was just showing residual effects on tissue of radiation (e.g. scarring).
  4. If the 2nd PET still indicates possible cancer, do a biopsy.
    1. If the biopsy shows cancer, they do surgery to remove the lymph nodes.
      Note: cancer at the back of the throat doesn’t recur; it’s only in the lymph nodes that they might see recurrence.
    2. (Now, here’s where I think I might have misunderstood.) If the biopsy does not show cancer, they’ll still remove the nodes, because the biopsy might be wrong. (As I noted, I might not have gotten that right. But, at this phase of my treatment, I’m not going to worry about it. I’ll cross that bridge only if I reach it.)

Q: How do I get it on record that agency doctors and staff may give my wife any information that they would give me, whenever she asks for that information?

A: As far as my RO can tell from reading my profile, my wife can already get info simply by asking. There is a form available at the Health Records that I would need to complete so that staff at that office would comply with my wishes.

Next Steps

I need to search for more info about “alternative” and “accelerated” RT for HPV-positive OPC.

First PET scan results

When we went to the Victoria Cancer Clinic on Thursday July 4, 2019 to meet with my SLP and my medical oncologist, we dropped in to the Health Records office to pick up updates to my file.

For those of you who might not know, patients in BC are entitled to obtain all records kept by their doctors. When I go into the Health Records office at the clinic, I can ask for copies of any of them, and receive them at no cost just by presenting my BC Care Card. It’s a little more difficult to get copies of CT and PET scan images, because you have to ask for image copies from the centre where your scans were done. But all correspondence between my personal GP, ENT, radiation oncologist, dietitian, SLP, medical oncologist, and general practitioner in oncology is kept on electronic file and is easily obtained.

One of the documents that had just been put into my records was the results of the PET scan of Saturday July 29, 2019. Those results showed cancer “glows” only within the right base of tongue (4.5 cm x 2.5 cm) and in right cervical level II and level II/III lymph nodes. The largest node measures up to 1.8 cm. Nothing else anywhere in my body.

A little later in the day I received a phone call from my radiation oncologist to tell me the PET scan results. He was happy; because there isn’t any cancer showing in my left lymph nodes, he’ll be able to reduce radiation volume on that side.

First meeting with Medical Oncologist

I met with my medical oncologist (MO) Thursday July 4, 2019 to talk about chemotherapy (aka systemic therapy).

Almost right off, my MO said that chemotherapy, for me, was entirely optional, which surprised me. I’ve always thought that the primary purpose of chemo was to implement a mechanism for killing off any cancer cells that might have migrated beyond the regions that surgery and radiation target.

But my MO corrected me; the primary purpose of chemotherapy, at least when applied to HPV related oropharyngeal cancer treatment, is to improve the efficacy of the radiation treatment. The platinum in Cisplatin (the drug that would be prescribed in my case) binds to the cancer cells and the platinum makes the cells more sensitive to the concurrent radiation therapy. Without the chemo, the radiation simply has a harder time killing the cells.

What I thought was the primary purpose of chemotherapy is instead the secondary purpose. And, what I also learned about HPV related base-of-tongue cancer, is that cancer cells very rarely migrate beyond the lymph nodes. Therefore, if the cancer is treated soon enough, as mine will be, that secondary “seek and destroy” purpose is almost unnecessary.

My MO also made me aware that, for HPV related oropharyngeal cancer, no randomized clinical tests have been conducted that show conclusively that the standard chemotherapy treatment actually has a significant impact on 5 year survivability. It’s possible that chemo would not actually help me.

A little background is required here. Please note that the following is what I remember my MO telling me; it may not be entirely accurate. I’ll provide updated information, and supporting citations, in future posts.

  • Older survivability studies of patients with oropharyngeal cancer showed 5 year survivability rates of roughly 60%. In those studies, patients who received chemotherapy in addition to radiation therapy had a survivability rate about 8% higher than those patients who had radiation therapy only.
  • But those studies did not differentiate patients who had smoking related cancer from those with HPV related.
  • Studies show that people who live 5 years after treatment for the HPV related version of oropharyngeal cancer do not die of the same cancer; they are cured.
  • Studies also show that the survivability rate for HPV related oropharyngeal cancer patients who receive both radiation and chemo therapies is around 80%
  • But no studies have returned results yet that show that the chemotherapy that HPV related patients receive has the same 8% impact on survivability. Given that the HPV related cancer is a very different beast from the smoking related version, it’s very possible that the impact of chemotherapy is much lower than 8%. In fact, it’s possible that the chemotherapy could have a negative impact on survivability rates, because chemotherapy comes with side effects that can be very devastating.
  • Nonetheless, the standard cancer treatment for oropharyngeal cancers, as recommended by ASCO (American Society Of Clinical Oncology) and ASTRO (American Society For Radiation Oncology), is radiation supplemented by Cisplatin chemotherapy. This will remain in effect until studies show that the chemotherapy is unnecessary. Studies have been started, but they have been running less than 5 years, so results aren’t in yet.

So I’ve got about 2 weeks to decide whether I want to have chemo. My MO is going to book a bed for me for the first day of treatment (see treatment plan below), and I can cancel it at the last minute (although giving a day’s notice would be better so they can give the bed to someone else).

Posts in the next couple of weeks will include my investigation into the pros and cons of chemo for HPV related oropharyngeal cancer. Those posts will include links to source materials.

Current Treatment Plan

  • Chemo-radiation therapy will start Monday July 29, 2019
  • I will be given radiation over a 7 week period. In that period I will have 35 daily treatments, Monday through Fridays.
  • I will have 3 cycles of chemotherapy. Each cycle will comprise 1 daily treatment. Treatments will occur on Day 1 and Day 22. If my MO thinks it’s appropriate, I will have a treatment on Day 43.
  • Cisplatin chemotherapy treatments take a long time, because it’s critical that the platinum be washed completely out of my vascular and renal system by the end of the treatment, and that my kidneys be checked before I leave the hospital. Therefore, just to make things a whole lot simpler, I will be checked in as an overnight patient for chemotherapy treatments.
  • I have the right to go through the first cycle, determine that the side effects are too uncomfortable to continue, and discontinue treatment. Similarly, my MO could also decide to terminate chemotherapy if he decides that costs of continuing do not warrant the hoped-for benefits.
  • My MO frequently suspends chemo treatments after the 2nd cycle

Alternative Treatment Plan

If I decline chemotherapy, my radiation oncologist would put me on an accelerated treatment plan. I would still receive my total dosages (70 Gy to the primary site and 56 Gy to elective sites), but over just 6 weeks. On one day of the week I would receive 2 doses instead of 1.

This alternative radiation plan is given to accommodate the lack of chemo. As I noted above, the primary purpose of chemo is to accelerate the death of cancer cells by making them more sensitive to concurrent radiation therapy. The doubling up of doses is intended to make up for the fact that the cancer will be less sensitive.

Other Systemic Therapies

The chemotherapy that my MO has in mind for me is known in BC as “HNLAPRT” (Head and Neck Locally Advanced Platinum Radiation Therapy). The BC Cancer Agency’s patient handout for this therapy talks about the following.

  • what Cisplatin is
  • its intended benefits
  • the HNLAPTR treatment summary
  • treatment protocol (i.e. cycle details)
  • chemotherapy side effects and management
  • radiation side effects and management

Other systemic therapies available for use with radiation therapy include the following. Patient handouts and protocol summaries for each of these can be found at the BC Cancer Agency’s Head & Neck Chemotherapy Protocols page.

  • HNLAALTPRT (Head and Neck Locally Advanced ALTernate Platinum Radiation Therapy)
    • The treatment cycle changes so that the patient receives smaller but more frequent doses
  • HNLACETRT (Head and Neck Locally Advanced CETuximab Radiation Therapy )
    • Cetuximab is used when Cisplatin cannot be used, for example when the patient’s renal function is already impaired, or already has tinnitus or some hearing loss
  • HNLACNFRT (Head and Neck Locally Advanced CArboplatin and Fluorouracil Radiation Therapy )
    • This treatment is very hard on the body and is very rarely used anymore

Cisplatin Side Effects

  • nausea, often with vomiting
    • The MO would attempt to reduce nausea by having me take anti-nausea medication prior to taking the Cisplatin. The anti-nausea drugs themselves have side effects.
  • diarrhea
  • mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract
  • damage to bone marrow leading to
    • reduction in number of red blood cells resulting in fatigue
    • reduction in number of white blood cells resulting in reduced ability to fight infection
    • reduction in number of platelets resulting in increased bruising
  • kidney damage resulting from platinum damage to cells
  • hearing loss
  • hair loss from the Cisplatin is rare
  • tinnitus is the perception of noise or ringing in the ears
  • neuropathy is the loss of feeling in fingers, hands, and feet, and can sometimes become permanent
  • weight loss that compromises health
  • increased susceptibility to auto-immune diseases

Why I am a good candidate for Cisplatin treatment

My ECOG performance status is 0. That means that I am “Fully active, able to carry on all pre-disease performance without restriction”. Therefore, I should be able to handle the additional burdens placed on my body by the chemo supplement better than someone at higher ECOG ratings.

The Eastern Cooperative Oncology Group (ECOG) is one of the largest clinical cancer research organizations in the United States and conducts clinical trials in all types of adult cancers.

The ECOG performance status is a scale used to assess how a patient’s disease is progressing, assess how the disease affects the daily living abilities of the patient, and determine appropriate treatment and prognosis

Radiopaedia

Weight loss issues

My MO tells me that the dietitian that I’ve been assigned to is a person who is very determined to maintain my weight at acceptable levels, and will be on the MO’s case if my weight drops more than 10% of my baseline weight. From reading the HNLAPRT protocol document, I see that, when the 10% is hit, either the patient gets a feeding tube and the chemo dose drops by 25%, or chemo must be discontinued.

I asked which of my many weights is deemed the “baseline”, because, knowing that weight loss is an issue, I’ve been bulking up. I was 169 lbs when had my open biopsy on May 22, and my desire is to have that treated as my baseline; on my 6’1″ frame I’ll definitely be skinny if I drop to 152 lbs, but I won’t be on death’s door. According to my MO though, the standard baseline is defined as the weight I have when treatment commences, which I’m hoping will be around 185 lbs.

Thinking about this more, I’m starting to think I may be really wrong in thinking that allowing myself to drop 18% from 185 to 152 would be OK. That 10% figure indicates that the treatment is having a very significant effect on my body, and that the treatment needs to be amended some way to ameliorate the side effects.

My thoughts

I’m seriously considering not going with the chemo. I really want to minimize the side effects of my treatment, and some of the chemo side effects sound pretty severe.

I might also say, “Let’s try one cycle, and see how it goes.” But I don’t know how the radiation oncologist would like that; would he want, or not want, to accelerate his treatment?

I think I’ll chat this over with other members of “my” team (dietitian, radiation oncologist, speech language pathologist, and general practitioner in oncology) to get their thoughts.

Drug Side Effects

Chemotherapy drugs

Cisplatin

  • nausea, often with vomiting
    • The MO would attempt to reduce nausea by having me take anti-nausea medication prior to taking the Cisplatin. The anti-nausea drugs themselves have side effects.
  • diarrhea
  • mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract
  • damage to bone marrow leading to
    • reduction in number of red blood cells resulting in fatigue
    • reduction in number of white blood cells resulting in reduced ability to fight infection
    • reduction in number of platelets resulting in increased bruising
  • kidney damage resulting from platinum damage to cells
  • hearing loss
  • hair loss from the Cisplatin is rare
  • tinnitus is the perception of noise or ringing in the ears
  • neuropathy is the loss of feeling in fingers, hands, and feet, and can sometimes become permanent
  • weight loss that compromises health
  • increased susceptibility to auto-immune diseases

Top

Chemotherapy anti-nausea drugs

  • aprepitant: tiredness, hiccups, nausea, vomiting, heartburn, stomach pain, diarrhea, constipation, loss of appetite, hair loss, headache, dizziness, mild skin rash, ringing in your ears, sleep problems (insomnia)
  • dexamethasone: vision changes, swelling, rapid weight gain, sleep problems (insomnia), mood changes, acne, dry skin, thinning skin, bruising or discoloration, slow wound healing, increased sweating, headache, dizziness, spinning sensation, nausea, stomach pain, bloating, muscle weakness, changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist)
  • diphenhydramine: drowsiness, dizziness, headache, irritability, stomach upset, blurred vision, decreased coordination, dry mouth/nose/throat
  • lorazepam: dizziness, drowsiness, weakness, slurred speech, lack of balance or coordination, memory problems, feeling unsteady, severe drowsiness, thoughts of suicide or hurting yourself, unusual changes in mood or behavior, confusion, aggression, hallucinations, worsened sleep problems, sudden restless feeling or excitement, muscle weakness, drooping eyelids, trouble swallowing, vision changes, upper stomach pain, dark urine, jaundice
  • ondansetron: diarrhea, headache, fever, lightheadedness, dizziness, weakness, tiredness, drowsiness, constipation, rash, blurred vision, muscle spasm
  • prochlorperazine: dizziness, drowsiness, anxiety, insomnia, strange dreams, dry mouth, stuffy nose, blurred vision, constipation, breast swelling or discharge, missed menstrual periods, weight gain, swelling in hands or feet, impotence, trouble having an orgasm, mild itching, skin rash, headache, low blood pressure

First meeting with SLP

I met Courtney, my Speech Language Pathologist (SLP), today (July 4, 2019) to review what I could/should be doing now to reduce oral side effects resulting from radiation and chemo therapies.

Before getting into that, though, we talked about things like:

  • getting a humidifer might, or might not, help
  • the use/non-use of nebulizers
  • swallowing problems are a major side effect of radiation therapy for head and neck cancer, can unfortunately be life-long, and can certainly last beyond 2-3 months post-treatment
  • saliva problems and changes in taste can be the longest surviving problems. Some people never regain these facilities entirely.
  • if I need answers to specific questions about non-SLP issues, such as symptom relief, I should talk to Dr. Terry Meadows, a General Practitioner in Oncology (GPO) on staff with the Victoria Cancer Clinic

Courtney provided me with a handout that outlines the side effects of radiation in regards to swallowing, opening my mouth, and speaking, and that briefly describes how to reduce my risk of having swallowing or mouth opening problems.

(Note: I lifted some of the phrases in the following directly from the above-noted handout.)

Relevant Side Effects

  • mucositis: inflammation of the mucous membranes resulting in pain when swallowing
  • xerostomia: lack of saliva due to radiation damage to the salivary glands
  • dysphagia: swallowing difficulties
  • taste changes
  • swelling
  • atrophy: weakening of the tongue, jaw, and neck muscles responsible for swallowing
  • fibrosis: the scarring and stiffening of tissues in the field of radiation, resulting in the swallowing and mouth-opening muscles not moving easily. It can take 3-12 months, or even years, before fibrosis raises its head.

Ways to reduce risk

  • Perform excellent oral care through daily flossing, careful brushing, using oral rinses, and caring for good-fitting dentures. Courtney provided me with a sample CuraProx 5460 toothbrush (highly regarded on UK blogs).
  • Continue eating and drinking as long as possible
  • Perform swallowing exercises before, during, and after treatment to reduce short-term and long-term swallowing problems

Key Takeaways

  • The baking soda rinse is effective in reducing mucositis
  • Products containing Xylitol, like Xylitol Gum, Xylitol Pastilles, and Xylimelts, as well as Biotene products like Dry Mouth Moisturizing Mouthwash, Dry Mouth Moisturizing Spray, and Oralbalance Moisturizing Gel are effective in reducing xerostomia
  • Atrophy and fibrosis are long-term side effects that can significantly affect my QoL
  • Both can be significantly reduced through early, frequent, regular, and on-going exercises
  • “Use it or lose it!” applies to one’s swallowing function. Patients who move quickly to soft foods and then to liquids and then to feeding tubes take much longer to regain their ability to swallow than people who keep eating and swallowing as much as they can as long as they can.
  • “Buffing up” jaw muscles, neck muscles, and the tongue protects those muscles from the weakening/stiffening that can occur later in treatment. I’m already finding that my tongue weakens as I eat crunchy foods like coarse, raw vegetable salads, so I’m eager to start these exercises.
    Exercises that I should perform at least 3 times daily are as follows. Exercises should never push into the pain realm.
    • Shaker Exercise Parts 1 and 2
    • Chin Tuck Against Resistance (CTAR) Parts 1 and 2 if the Shaker exercise causes other structural/musculature problems
    • Mendelsohn Exercise
    • Effortful Swallow
    • Tongue Stretches
    • Jaw Stretches. I may need to practise these forever to ward off fibrosis.

Diagnosis Side Effects

Fine Needle Aspiration (FNA) Biopsy (level II lymph node)

I had two FNA biopsies.

  • The first (March 1, 2019) was done by a relatively young doctor in a hospital setting. She applied a topical freeze to my lump before inserting the aspiration needle. Nonetheless, the feeling of having material removed from the lump is uncomfortable. Not, for me, painful, but uncomfortable. There were no lingering side effects.
  • The second (March 22, 2019) was done by my ENT in his office. He eschewed the topical freeze and said, just before he inserted the biopsy needle, “This is going to hurt.” He wasn’t far off. His method was more probing than that done in the hospital. It still wasn’t “painful”, but it was very uncomfortable. Well, maybe it was painful. The lymph node was still sore the next day. But no other side effects.

Open Biopsy (Primary Site: Base of tongue)

My Experience

My open biopsy (May 22, 2019) occurred under complete sedation monitored by an anesthesiologist in a hospital operating room. Recovery took place in the Recovery and Post-op Day Surgery areas, under the watchful eyes of apparently very experienced post-op nurses. I had no difficulties walking out of the hospital into my wife’s waiting car about 1 hour after waking up from surgery. Most of the post-op time was in a semi-reclining position. No further side effects other than the predicted soreness. My surgeon had prescribed Tramaset, a combination of two pain relievers – tramadol (an opioid analgesic) and acetaminophen, as a painkiller, but all I took was three T3’s. (My approach with painkillers is to apply as necessary and when necessary.) Your mileage may differ, but I hope not.

Andy Krauska’s Experience

For some, like Andy Krauska, biopsies do have side effects. He and I appear to be of similar age, and appear to have similar symptoms and timing. A notable difference between one of his biopsies (Andy’s Cancer Journey: Biopsy – Back of Throat) and mine is in the use of painkillers; he took the prescribed acetaminophen and hydrocodone. The following comes from an email that Andy sent me.

The biopsy surgeon did not prepare me at all for the gag flex and vomiting.  I almost called 911  as I couldn’t breath for several moments and was thinking, “you gotta be kidding me, I’m going to die choking on my own vomit!”  The gagging and vomiting repeated even while the doctor was on the phone and saying only “keep drinking water.”  What she should have said before the surgery and in writing was: You need to sit up in your bed with your head tilted slightly back to get the uvula back in your throat so it doesn’t touch the tongue, that’s what’s triggering the gag reflex and vomiting.  It may take 4-6 days for the uvula elongation and the tongue swelling to go down.  To help that process, you can suck on crushed ice, rinse hourly with salt (1/4 tsp), water (8 ounces) and baking soda (1/4 tsp) solution. Also, be aware that you will have ulcerations in your mouth on the inside of the lips and under the tongue and on the uvula, they will appear white.  They are normal and will go away over the next week; they are caused the surgery and are normal side-effects.  Besides the rinsing every hour, you can get an over the counter rinse called Gly-oxide and use it 2-3 times a day topically or as a rinse. Sleeping in a sitting position will also help reduce the swelling of the tongue.

Andy Krauska, June 29, 2019

Two teeth fewer

I saw Dr. Pite today, and he extracted the two teeth: the exposed-root, root-canaled, top-right molar; and the one molar opposite on the bottom jaw.

I was shaky going in; this is the first actual thing that I have to do to my body because it has cancer. It’s the beginning of a hard, steep road.

I’m really sorry that those two teeth had to go; they’ve been with me a long time, and have done a good job. I would have liked to keep them. I asked Dr. Pite if there was any chance he’d changed his mind about this being a good idea; he hadn’t.

Hey, did you know that some people have denser jaw bones than others? What was predicted to be a 1-hour session to remove two teeth went just under 2 hours, because I have really dense jaw bones. I’ve got to give him credit; not once did I hear Dr. Pite say anything like a four-letter word, and I never saw him break a sweat. He just kept working to unwedge those four roots from the matrix in which they were embedded.

X-rays after the work showed no bone or tooth chips left behind.

What was found was infection on the root-exposed tooth. Now Dr. Pite is very happy that he made his recommendation. I guess I am too. But my mouth is sore, and it wasn’t before. But this is only the beginning Ken…

Prescriptions include:

  • penicillin to combat infection
  • Tylenol 3’s to combat pain
  • Dexamethasone (corticosteroid in pill form) to reduce inflammation
  • Chlorohexadine gluconate (e.g. Perio Plus) antiseptic mouthwash
  • plus Advil / Ibuprofen as needed

Soft diet for next 36 hours, soft tooth brushing, no sucking and no heavy weight-lifting, because we don’t want to pop the developing clots.

I’ve started to notice minor pain in the back of my throat that I attribute to the cancer growing. I want to get radiation and chemo started as soon as possible so that I can be “cured” as soon as possible, so I don’t want the extraction-healing process to go awry. I’m sorry to say that I’ve had teeth removed before, and I know the difference between a nice heal and a poor one; I’ll be a good boy and do whatever the dentist tells me to do. I want my jaw in really good shape for the upcoming CT scan a week from today.

First PET scan

My wife and I drove from Victoria, via BC Ferries, to Vancouver today (Saturday June 29) so that I could have my PET scan.

Before heading over, we took advantage of the Travel Assistance Program offered by BC’s Medical Services Plan. We called my ENT’s office assistant who completed the TAP form, and I picked it up at the office. I then called the TAP automated phone line and was given a confirmation number that I wrote on the TAP form. When we went out to Swartz Bay to catch the ferry, I handed over the form, the ticket agent confirmed a few details, I paid for my wife’s fare, and then we were on. The TAP doesn’t cover ferry reservation fees, and doesn’t guarantee travel; it’s up to patients to make sure they get to the ferry early enough to get an appropriate sailing. One more thing: although the TAP form indicates that travelers should be at the ferry terminal at least an hour in advance of sailing time, I saw no reason for that; it took us only about 1 extra minute than it would normally take us to get on board.

The PET scan itself was pretty boring.

I wore clothes that didn’t have any metal in them (i.e. not jeans with metal rivets). As per instructions, I’d been fasting for 6 hours, and had drunk about a litre of water. I was instructed to feel free to use the washroom anytime before the scan.

The first medical person I dealt with injected me with a radio-isotope, sugar-based solution that I didn’t feel in any way. I needed to stay pretty much immobile for the next 45 minutes while the solution found its way to my cancer cells where the glucose-isotope combination would bind to the cells. I thought that I’d be able to read for that time, but was told that reading could result in twitching muscles in my eyes, fingers, and elsewhere, and the glucose would happily bind to active muscles. It would be ideal if I could sleep during the isotope uptake, so I gave it my best shot.

Forty-five minutes later I was wheeled into the scanner room. I moved onto a table which then slid in and out of the torus twice fairly quickly and then once slowly. The process took about 20-25 minutes, was fairly quiet, and I felt nothing.

They released me, saying I was free to eat and drink anything I wanted. As I said, pretty boring.

First meeting with Radiation Oncologist

My wife and I met my Radiation Oncologist (RO) today (Friday June 28) for the first time.

He confirmed that his plan is for me to have 35 radiation sessions, 5 days a week for 7 weeks. Total dosage to the primary cancer site at the base of my tongue will be 70 Gy. Total dosage to the elective sites (sides of my neck) will be 56 Gy. They will use VMAT.

My next CT scan will be a week after I’ve had my teeth removed, to give my mouth time to recover and not skew the resulting images. The scanner will be tied to my RO’s planning software to allow him to design the doses.

Radiation treatment will commence about 10 working days after the CT scan. That makes it between Wednesday July 24 and Monday July 29. Those 10 days give my RO time to plan the targeting regime and for technologists to build my mask. It will also give my medical oncologist time to finalize chemotherapy plans (I meet with the medical oncologist Thursday July 4).

I told my RO that I’m not afraid of dying. As far as I’m concerned, death can’t be avoided, so there’s no point in worrying about it. But, although I’m not concerned about quantity of life, I am concerned about quality of life. So, we talked about my options regarding de-escalating dosages so that the side effects could be minimized.

We also talked about feeding tubes. I told my RO that I’d rather eat razor blades (a common way, I’ve heard, of describing the feeling of mucositis) than have a PEG. He told me that it’s common procedure in both the UK and in Toronto to insert PEGs early in treatment in anticipation of problems. In Victoria, though, PEGs aren’t inserted until it becomes obvious that they’re required. And, it sounds from him, that they’re having very good success not inserting PEGs. Fingers crossed.

My RO acknowledged that there are a variety of ideas about the appropriate intensities and volumes of radiation to give. His current thinking aligns with those of the BC Cancer Agency: although there are hopeful indications that de-escalation will be appropriate for HPV+ oropharyngeal cancers, randomized clinical trials have not yet shown that de-escalation will result in the same high survival rates that “standard” dosage plans have. Essentially, my RO said, it comes down to this:

  • I can have “standard” dosages, and go through a few absolutely miserable months of side effects, and feel very confident that I won’t ever have this cancer again, or
  • I can have “reduced” dosages, have reduced side effects, and take the chance that the cancer will come back and that I’ll have to go through this all over, or maybe worse if the cancer has spread.

During our discussion I commented that one of the earlier notes from my ENT indicated that my cancer was T2 N2a. My RO said that he didn’t necessarily agree with that; he thought that, although the lymph nodes were involved, I could be at N1; he wouldn’t be able to say more definitely though until he’d seen my PET scan (which happens tomorrow). The results of the scan should be ready in about a week.

My RO agreed with my expectation that the medical oncologist would recommend 2, possibly 3, chemo sessions. He pointed out that the low treatment frequency results from the fact that chemotherapy improves chances of survival by only 8% on average; without a doubt, radiation is the primary treatment for OPSCC.

And then he stuck the laryngoscope down my nose. Oh, how uncomfortable that is, even with Lidocaine sprayed in my nostrils. Unfortunately, he says that’ll be a very common occurrence for the next number of months.

He also manipulated my swollen lymph nodes. He was happy to say that they were still very mobile, which is a good thing. If they weren’t, that would indicate that the cancer in them had affixed itself to surrounding tissue, like the roots of a tree do in the soil. The less attached the nodes are, the less tissue there is to irradiate.

On our way out of the cancer clinic, my wife and I stopped off at the library in the clinic. It’s a very nice, soothing looking space, but it doesn’t have a lot of materials on head and neck cancers, and much of it is relatively old. I’ll continue to get my information from web searches and by double-checking via source citations.

The cancer clinic does host a Head & Neck Cancer Support Group. It meets one Tuesday of each month. I’ll attend at least one session to see what I can learn and what I can offer.