The bad news is, HPV+ throat cancer is on the rise.
The good news is, it is highly curable…90-95% in non-smokers where the cancer that hasn’t spread outside the neck.
The bad news is, 1 in 3 people after standard treatments have significantly long-term effects.
The good news is, the Mayo Clinic is soliciting people for clinical trials for treatments that will still be curable but with far less side effects and toxicity.
I asked John if he would have been willing to go to the Mayo Clinic for a clinical trial and he said YES.
If you would like more information about this trial, please contact: Dr. Daniel Ma at the Mayo Clinic by email: Ma.Daniel@mayo.edu
I am unable to embed a youtube video on this site, but please see more here:
With the past year of crisis behind us (and I am working on a post that details our journey through 2012’s diagnosis and treatment) we are now facing what we’ve come to think of as The Year of Clean-Up. Throat cancer hit our lives like a devastating natural disaster, plunging a 54 year old physically fit and healthy man into surgery, the strongest and longest dose of radiation given for any cancer, chemotherapy and recovery. The crisis has passed, and continuing to clean up the mess will be tho focus of our next year. We focus on this with gratitude for the doctors, friends and family that made it possible to be here right now.
If there’s one thing we’ve learned from this past year of crisis and challenge, it’s respect and amazement for how adaptable human beings are to drastically changing circumstances. John went from hale and hearty to months of being unable to work, eat, or even literally see the world as he was used to seeing it. If you had told John a year ago that he would lose function in his shoulder, would be unable to work out as he used to, would need a machine at night to breathe properly and would see the world like something out of a Peter Max illustration he would have been utterly freaked out; but then, a year ago at this time he was freaked out about potentially dying from cancer. After the first flush of relief that his cancer was treatable and curable he was then freaked out about some of the worst side effects of throat cancer treatment that never came to pass, like losing his ability to speak or swallow or work again. Nobody knows how they will be physically, emotionally or spiritually tested in a crisis like throat cancer, and nobody knows what they will face or how they will face it. But I am here to tell you that however this journey plays out in your life you can and will adapt and resume your life, however changed it might be.
John’s journey began with a biopsy on Jan 4th, 2012, a lymph node dissection surgery on January 26th, and the last of his 35 radiation treatments on April 20th. Instead of three chemotherapy sessions he only had one, due to an unusually neurotoxic response I’ll describe below. His follow-up PET scan was NED, sweet-talk for “No Evidence of Disease.” Our term for this is, cured.
THE EXPECTED ISSUES
John is dealing with some of the expected outcomes. His sense of taste, while improving, is not all the way back. Eating is still more of a chore than a pleasure, and meat remains the hardest substance to chew and swallow, having a consistency like cardboard. With the exception of strongly spiced or peppery foods, though, he can eat just about anything, and amazed me over Thanksgiving week in Mexico on the occasion of our 25th Wedding Anniversary by eating an entire Mexican platter including chile rellenos!
He’s back at work full-time, off of all medications, and has started working out at the gym again. So there is a lot to grateful for!
John was lucky to have a great set of chompers going in, with only a few cavities filled over a lifetimes. During the radiation treatments he wore a custom-fitted dental appliance usually used for teeth whitening. This was filled with fluoride gel and held in place for 20 minutes, used daily during radiation. Since the end of radiation he’s had gum recession for the first time in his life and still can’t use toothpaste with strong mint flavors. He uses Sensodyne toothpaste and rinses with Xylitol, as recommended by his dentist and which has anti-bacterial properties. While John never entirely lost his saliva during or after treatment (thanks to regular acupuncture treatments) he is still deficient in the thin saliva, which makes it much easier to get cavities. We discovered that John was also clenching his teeth at night die to sleep apnea (discussed below) and this was causing the rims of his front teeth to become jagged with little bits of tooth breaking off…an alarming development to be sure. His dentist sanded off the rough edges and filled nine cavities in the front teeth that had suffered breakage, and his smile looks normal again. In the process, though, his dentist found five more cavities along the sides of the molars where the gums had receded, so there’s another round of cavity-filling coming up soon. We expect to see more cavities and more fillings in the coming year, but at least he has teeth to fill!
THE UNEXPECTED ISSUES
Ironically, the greatest problems John has had as a result of treatment were unexpected, unpredictable, and highly unusual, to say the least. He tends to react strongly to medical treatments; something we didn’t know because he’d never been sick with anything worse than bronchitis before this. Some of these problems are clearing up, but with others it’s unclear to what degree there will be recovery.
While recovering from the lymph node dissection on January 26th John complained about shoulder pain on the side of the healing incision, and it was difficult for him to raise his arm up over his head to brush his hair. Amazingly, he was back to chopping wood for the fire within a week of his surgery, so we thought this pain and limitation would be temporary. Turns out, we still don’t know.
John’s course of 35 radiation treatments was done on a new protocol, 6 times a week instead of 5 days a week. This meant he had radiation treatments twice on Thursdays, once in the morning and once in the evening. About three weeks into his radiation, and two weeks after his one (and only) chemotherapy infusion, the muscles around his right shoulder quite suddenly atrophied, looking quite deflated. His right shoulder drooped and his right clavicle stuck out dramatically. During this time John wore a tank top to his various appointments as his skin was becoming quite red and painful, and when he took off his outer jacket to show his ENT the sudden change in his right shoulder I saw the sad, worried look in Dr. Sprague’s eyes. “I hope that comes back,” he said quietly. No one could agree on why it was happening. His surgeon said the he’d had to “stretch” the accessory nerve a bit to get it out of the way of cancerous lymph node but thought the radiation was responsible but the sudden atrophy. The radiation oncologist thought it was from the surgery. I thought it was from the chemotherapy, since he’d had so many other neurotoxic effects from it (see below). Neither of us cared at that point what caused it– what we wanted to know was what to do about it. Everyone agreed he would need physical therapy, and that couldn’t start for several weeks until the radiation was over and his skin healed.
John started physical therapy three weeks after the end of radiation, and at my insistence had an EMG (electromyogram) at the end of May to test nerve transmission. He shoulder hurt dreadfully from just hanging there, but he had full use of his hand and lower arm. He couldn’t reach up over his head without “assisting” with the other arm. After testing the nerves he was told that there was no reason why the muscles couldn’t recover within a couple of months.
But they didn’t. John has been to two physical therapists, a shoulder specialist in the San Francisco Bay Area, a neurologist, and has had another EMG. Three of the muscles around the shoulder girdle (the trapezius, supraspinatous, and rhomboid) are non-functional due to accessory nerve disorder. There is no corrective surgery to be done, no special exercises or workouts to bring back the muscles. They are unaffected by acupuncture. Once of the long-term side-effects of intense radiation is the formation of fibrous tissue, and John works with a rolfer who does deep massage to break-up the fibrosis in his neck and shoulder on a regular basis to prevent further damage or construction. He has ordered a brace to hold his scapula in place because it “wings” out without muscles to stabilize it. We work on moving his arm through range of motion exercises nightly so that his shoulder maintains its mobility and doesn’t freeze up.
We haven’t given up on it, though. The neurologist he saw in early December said that he shouldn’t give up hope for up to two years, and to keep working with it and encouraging any signs of life. John feels certain that he will “get his arm back.” This will be our greatest clean-up project over the next year.
Without regret, and knowing he made the best decision he could at the time, John says that knowing what he knows now he would not choose to have the lymph node dissection surgery, since that isn’t part of the standard treatment protocol and it appears that is where the original damage to the accessory nerve occurred. While this doesn’t interfere with his work, his shoulder aches all the time, he’s learning to use his left arm for lifting and reaching, and he’s having to find other ways to work out, as his old weight-lifting and pilates routines are no longer possible.
During treatment John began snoring but in the summer the snoring took on a truly alarming timber. He’d gasp and thrash and sometimes hold his breath for long periods of time. I would wake up to see his entire abdomen jerking up and down spasmodically, shaking the entire bed, and I’d shake him until he’d finally take in a huge gasping breath. Around this time he was becoming discouraged and not feeling any better, at feeling foggy all the time and “not in his body.” In what was a major cause of frustration for me this took a ridiculously long time to get seen to, diagnosed, and treated. It was just assumed that of course he didn’t feel like himself with all he’d been through. He needed to give it time, up to a year, to recover. Here’s what I want to say to fellow caregivers: If something doesn’t feel right, it’s because it isn’t right. Trust your instincts and continue to push for answers. We finally got John in for an overnight sleep study at a local clinic. They woke him up two hours into the study (he’d had 99 “events” of stopping breathing and of his blood oxygen dropping to dangerous levels that can lead to heart attack and organ damage) and put a CPAP mask on him. His sleep study showed that he wasn’t ever getting into the deeper levels of sleep. No wonder he felt so terrible!
Dr Sprague looked down into his throat and said that the trouble breathing at night was caused by obstruction from ongoing swelling at the back of the tongue and in the throat. Apparently John didn’t have a lot of clearance to begin with, and when he relaxed at night and his tongue fell back and obstructed his breathing. Sprague guessed this will clear up in 6-12 months as John’s throat continues to heal.
John was initially reluctant about the whole C-PAP idea. What he had heard was that it is noisy, uncomfortable, and your wife won’t sleep in the same room with you any more once you’re using it. I pointed out that I was already spending far too many nights int he guest room trying to get some sleep of my own while he bucked and thrashed and gasped. Finally, two weeks ago he brought home a portable CPAP machine. CPAP stands for Continuous Positive Air Pressure, and it works by forcing room air into the mouth and throat to keep them open and unobstructed. Rather than the huge mask covering his mouth and throat, he was given a small mask with straps around the head and two soft silicon plugs that go up into his nostrils, much like the oxygen cannula you get in the hospital but that completely covers and seals the nostrils. Once in place, the machine itself makes not a sound. Water is added to the unit for a misting affect so that the device doesn’t create more dryness in the mouth and throat.
And here’s the thing…John sleeps all night now without bucking like a bronco. All is calm and peaceful, he is beginning to dream again, and wake up refreshed, and feel like himself again. What a difference a good night’s sleep makes!
John’s dentist also guessed that the damage to his front teeth was happening during the apnea episodes when his teeth would come together with a snap, shearing off small bits and wearing away the enamel each time this happened. I haven’t heard of anyone else having this issue after radiation, but be aware if you’re hearing breathing problems at night. It’s worth looking into!
Weird Visual Aftereffects
One of the stranger things that happened was an extremely rare side effect of Cisplatin that happens in less than .12% of patients. John was given Cisplatin overnight in the hospital so it could be dripped in slowly and his reactions closely monitored. Nausea was controlled and his kidneys were fine, so he was sent home on Saturday morning.
On Sunday he was sitting in the reclining chair looking out the big picture window on a clear sunny day and asked me if it was raining. Whaaaaa??? In his visual field he was seeing what looked like diagonal sheets of water pouring across the sky….only he also saw it when he looked away from the window. His ears were ringing and his feet were burning and numb. Because Zofran, the powerful anti-nausea medication John was given could also cause serious visual disturbances (“hopefully temporary”) he was taken off of it and as a result spent the rest of the night vomiting, becoming dehydrated. I got him in to his oncologist the next morning who had never seen anything like this. It was, he said, as if John was reacting to months and months of chemotherapy instead of to a single session. The truth is, people vary in their ranges of sensitivity to drugs, and we discovered that John is highly sensitive to drugs. He tends to react on the far end of the spectrum. The oncologist checked John’s bloodwork (all of which was normal) and set him up for an infusion of fluids, and when John’s vision didn’t clear up that day or the next it was decided that this would be his only chemotherapy infusion. (“Common sense dictates that when a patient has a severe and unusual response to a drug you don’t repeat it,” his oncologist noted dryly.)
The diagonal sheets of water in John’s visual field gradually became more like a light rain, then a mist, and then the “watery” aspect of the disturbance slowly abated. His vision is normal enough that he can drive, read, and carry on, but it is in no way “normal.” He can’t describe how odd and different it is other than to say it’s as if everything has a “neon halo” around it and all colors are weirdly brighter and stronger, but he’s gotten used to it. The tinnitus is also still there but most of the time he manages to ignore it.
Some Final Thoughts:
If there’s one thing you learn from all this, it’s how adaptable human beings are to changing circumstances. If you had told John a year ago going into this that his shoulder wouldn’t be working, he wouldn’t be able to work out, he’d need a machine at night to breathe properly and his visual world would look like something out of a Peter Max illustration he would have been utterly freaked out; but then, a year ago at this time he was freaked out about potentially dying from cancer. After the first flush of relief that his cancer was treatable and curable he was then freaked out about some of the worst side effects of throat cancer treatment that never came to pass, like losing his ability to speak or swallow or work again. Nobody knows how they will be physically, emotionally or spiritually tested in a crisis like cancer, and nobody knows what they will face or how they will face it.
But face it you will, one step at a time.
John was very fit and trim when he was diagnosed. He worked out with weights 3-4 times a week, took Pilates classes, and rode his bike regularly. At 5’7″ and 158 pounds he had very little body fat or weight to spare.
During the time between diagnosis and treatment we were able to add an additional 10 pounds to his frame, so he started treatment at 168 pounds.
Why John Chose the PEG Tube:
Going in, John was told he would lose 10-40% of his body weight from radiation. My biggest concern for him going in was weight loss. As I started reading blogs about dealing with side effects from radiation I first ran into the idea of a PEG tube. Punching a hole directly through your abdominal muscles and into your stomach sounded invasive and extreme, and I wasn’t sure John would go for it. As it turned out, he had no hesitation about it. John had just met a fellow who had gone through 6 weeks of radiation for HPV squamous cell tonsil cancer that was discovered in situ (that is, no spread to the lymph nodes) and he had chosen against the feeding tube. He ended up losing 40 pounds which actually brought him down to a normal weight. But John knew full well he didn’t have 30-40 pounds to spare!
John’s ENT and Radiation oncologist both recommended the PEG tube. John’s chemotherapy oncologist explained that the use of the tube is controversial to some. If a person becomes dependent on the tube and stops eating altogether they can have much more trouble regaining their swallowing ability after treatment. It was emphasized to John that even though he would have a feeding tube, he would have to regard it as an ancillary method of getting nutrition in him. He absolutely had to keep swallowing on a daily basis. John agreed to this. I had spoken with a local man who had undergone treatment for the same cancer 5 years earlier, and he had also used a PEG tube. He had gone for 5 weeks without swallowing at all, getting all his nourishment through the tube, and as a result five years later still had some difficulty with choking when eating. So John had a pretty clear idea that this was to be avoided.
John did continue to swallow every single day of his treatment and aftermath, even when it was excruciating to do so. He was told that water would be the most difficult liquid to swallow (thicker, more viscous liquids are easier), and so he made that his personal challenge and swallowed his morning pills with water every single day. As a result, he has had no difficulties with regaining his ability to swallow, as he never let it go.
It was recommended that John get the PEG tube “installed” at least three weeks before treatment started so that the wound would be completely healed up. He was warned that people who decided to “tough it out” without the tube would find it much, much more difficult to have one installed later.
Getting the PEG tube Installed:
John’s PEG tube was installed on 2.17.12. His first radiation treatment was scheduled for 3.12.12, so this gave him plenty of time to heal.
The procedure was done in the hospital under intravenous (not general) anesthesia. He was assured that this was going to be one of the simplest procedures with little downside or discomfort. Unfortunately, while this is true for most people, this proved not to be the case for him. I’m not describing this to scare anybody, but what happened to him has since happened to another acquaintance of ours who was subsequently diagnosed, and it is something that can be prevented.
John was sedated and taken into the procedure room. Briefly, a guide wire with a light on the end of it is run down the esophagus into the stomach. The surgeon then makes a small cut where he sees the light shining through the skin, and the plastic PEG tube is inserted through the hole. The tube is held in place inside the stomach by a small mushroom-shaped “cap” on the end. On the outside, the tube is held in place against the skin by a plastic hub.
When John awoke from the sedation he immediately had severe cramping. He was trying not to complain and to be a “good patient” but the cramps came in intense waves. He was given a shot of Dilaudid for the pain, but an hour later he was still having extreme waves of cramping. At this point somebody should have taken the bandage off his abdomen and checked the placement of the tube…but no one did. Instead, he was given another shot of Dilaudid. At this point John wanted nothing more than to get home and rest, and he assumed that the cramping would subside over time.
Unfortunately, while it did subside somewhat, the pain was still severe. When I came home from work that evening he was flattened in bed, unable to move an inch without intense pain. Sitting up in bed was impossible. He could slowly, with much painful effort, roll over on his side and I could then help him sit up. The waves of intense cramping were getting further apart but he was miserable.
Long story short, he spent an exceedingly miserable night in his reclining chair, hoping for respite. We knew we could go back to the emergency room, but we knew that would be an ordeal and that he would wait 6-8 hours in the waiting room.
I spent the evening searching the internet for an answer. I found two blogs where two men had the exact same experience. What they had in common? Both were lean, fit, muscled men with very little body fat. In one case the man went to the emergency room and the hub on the PEG tube was loosened by a GI doctor. In the second case, the man figured out how to loosen the hub himself, relieving his pain.
The following day we took the bandage off and studied the feeding tube. We tried fiddling with it a little bit to see if we could loosen it, but the mechanism for doing so wasn’t apparent. I called the on call number for the gastroenterologist who placed the tube, but instead of the call going to an answering service with a live operator, I got his office’s voicemail. Clearly I wasn’t going to get a call back before Monday (This turned out to be true, as the doctor’s office has neglected to switch their phone system over to the operator for the weekend).
What happens next shows the power of patience and persistence. I called the hospital and asked for the gastroenterologist on call. I was transferred to the emergency room, spoke with a nurse, and was transferred to the charge nurse, who couldn’t believe we could not contact John’s gastroenterologist. She even tried calling his office herself. She suggested we come to the emergency room. I explained that while John was very uncomfortable this was not a true emergency, that I didn’t want to make the 40 minute drive if I could help it, and that I didn’t want to sit in a waiting room for several hours with a cancer patient in the middle of a flu outbreak. She took my point and said she would contact the GI doctor on call.
15 minutes later the GI doctor on call called back. He had John’s records in front of him and saw the two Dilaudid shots that had been given. I explained John’s slim build and “wondered” if perhaps the tube was too tight. He agreed that John’s symptoms were likely muscle spasms from the tube being cinched down too tightly. He suggested we come to the emergency room. I explained again why I didn’t want to use the limited resources of the emergency room for a non-emergency. I explained that we were both medical people and understood the need for keeping the wound clean. I asked if he could simply talk us through the process of loosening up the tube ourselves. Thankfully, he decided to trust us, and explained how to go about releasing the pressure on the tube. It took us about 15 minutes of working with it, but once we loosed the hub on the tube and backed it out 2 cm, John’s relief was immediate and profound.
What am I suggesting here? I am not in any way, shape, or form suggesting that you fiddle around with your own PEG tube. I do suggest that, if you have it done:
1) Don’t have it placed on a Friday afternoon. If there’s a problem you don’t want to have to go to the emergency room.
2) Don’t leave the facility if you’re having pain or cramping, no matter how “difficult” a patient this makes you seem.
3) If you are slim or don’t have much body fat around your abdomen, report any cramping immediately. From what I can tell (and I realize this is only anecdotal), thin healthy men seem to have more trouble with their PEG tubes.
A couple of weeks ago I heard from a man about John’s age who weighed 130 pounds going into his treatment. There was no question he needed a PEG tube. He had the same experience as John, experiencing severe cramping and pain. He did end up in the emergency room until the gastroenterologist on call could come and loosen up the hub on his tube.
The feeding tube was a lifesaver.
One of the best resources I encountered was a blog called “You Start With a Tube.” The writer here was dealing with a long-term disease that rendered him unable to swallow, and he quickly grew weary of canned guck as well. Look for more information about him, about how to put all kinds of foods down a PEG tube, and how to deal with a clog if it happens.