Category: Post-Treatment

Feb and May ’21 Checkups

February 2021: I visited my ENT (who is also a surgical oncologist, but who did not do surgery on me) for a quick checkup. Because of covid-19, his office is absolutely empty, not even a medical office assistant, and my ENT is fully geared up in PPE and powered air-purifying respirator. He took less than 5 minutes to do a physical exam of my neck, throat, and tongue, including using a flexible fibreoptic naso-laryngoscope. As far as he’s concerned I’m good.

May 2021: I visited my radiation oncologist at the Victoria Cancer Clinic for another checkup. He also confirmed, via physical exam and naso-laryngoscopy, that everything looks good. He expects that I’ll meet again with my ENT in three months, and then with himself in a further 3 months. At that meeting 6 months from now we might do a CT scan to confirm that cancer isn’t showing up anywhere, and if all is good we’ll probably start spreading the checkups to periods of more than 3 months.

For myself, I feel fine. My sense of “sweet” is still really weak, and I’m still not producing as much saliva on-demand as I once did. That means that candies and sugared drinks don’t taste as good as they once did, and that baked goods both have less flavour and are more difficult to chew. More often than not, when eating baked goods, I need to have liquid close by so that I can wash my food down. It’s really not a big deal; just disappointing and annoying.

6 months post-treatment

Wow, March 26, 2020. It’s been a while! Time for some updates.

It was just over a year ago that I discovered I had base-of-tongue SCC. My last radiation session was about six months later on September 26, 2019, and that was six months ago. All in all I felt pretty good when treatment was done, certainly better than I’d expected, and the next three months went pretty well.

I had my follow-up PET scan on December 27, 2019. The Victoria Cancer Clinic had just finished installing its new PET scanner about a month earlier, and I was very happy to have the scan done in Victoria, rather than having to go to Vancouver.

The scan showed some flurodeoxyglucose uptake at both the primary base-of-tongue location and the secondary right-side Level II lymph nodes. That was not surprising; some sources (sorry, I don’t have any links for this) claim that 60% of first PET scans for base-of-tongue cancer show some uptake. My radiation oncologist said it’s likely just residual inflammation. I asked my ENT oncologist why the first PET scan is scheduled so early, given that 60% likelihood of a disappointing result. His response was, essentially, “Not all scans come back with good results. We need to know early when a patient appears to be having a real problem.” Fair enough.

My next PET scan is tentatively booked for April 7. I’m expecting good results; the swelling at my lymph nodes is much less than it was three months ago, and it was low then.

My beard has grown back! Except around the right lymph nodes that got the strongest dose of radiation. The skin there is absolutely hairless. That’s not a problem; I did’t like having a hairy neck anyway.

In my last post, I said that I didn’t have a sense of “sweet”. That problem has gone away! In general, food taste just fine. It took a while to get used to the taste of salsa, but that’s not a problem any longer.

But not everything tastes right. It’s hard to put a finger on what I’m missing out on, but I blame the cause on loss of saliva. It’s weird: during treatment I had no significant loss of saliva, but about 6 weeks post-treatment my mouth started drying up, most notably at night. I’m a 64 year-old guy, and like many in the demographic, I need to get up a couple of times each night, and that gives me an opportunity to have a sip of water. I’ve tried the Biotene gel and mouth spray products, but they don’t work for me. Both generate a lot of saliva quickly, but the effect is not long-lasting.

During the day, the lack of saliva isn’t a big problem. Unlike some people, I don’t need to carry a bottle of water with me all the time. I drink tea or coffee frequently during the day, and usually have a glass of water with my meals. I’m not suffering on the dry-mouth front.

Unfortunately, the lack of saliva has had an effect on my dental health. I was pretty good about flossing and brushing before my treatment started, and during and after treatment I was even more diligent. In fact, when I went in for my 4-month dental check-up, I thought my teeth were looking great, certainly better than they were before treatment. You can imagine my dismay to learn I had a cavity on one of my molars.

I’m guessing at a couple of factors for why I developed a cavity.

  1. I’m told that most people are poor at brushing the insides of their top molars, and I’m willing to bet I could do better there
  2. Although I’ve been using a high-fluoride toothpaste (Clinpro 5000), I usually rinsed my teeth after brushing. I should not have done that, and will be better in the future about not eating or drinking or swishing for at least an hour after brushing.

And then, just to throw a wrinkle in the works, I broke that cavitied molar when biting a soft cookie. I’d had a root canal on that tooth years ago, so it’s not bothering me, and it should be an easy fix for my dentist. I had been concerned that I might be faced with osteoradionecrosis as a result of the fix to the tooth, but as long as we don’t need to pull the tooth, my dentist says that shouldn’t be an issue.

You know what issue does exist though? Dentists in BC are totally unprepared for Covid-19. They’ve never had to stock the N95 masks, face shields, gowns, and gloves required to handle patients who might have the virus. They haven’t been taught how to don and doff personal protective equipment properly. Because they typically have their faces right in front of patients mouths, and will have drills and pressurized air in those mouths, they are rightly concerned that they will be exposed to the virus. So there’s a hold on in BC for dealing with anybody except those presenting with true emergencies.

And that trip to Spain that we’d been hoping to take…hah!

Living in interesting times.

Be safe everyone.

5 weeks post-treatment

The skin on my neck looks absolutely normal, and the lump is almost gone.

I’m no longer using any medications, including magic mouthwash.

I can eat anything! Unfortunately, I don’t have a sense of “sweet”, so some things still taste strange. Store-bought cookies taste weird, but my mother’s homemade cookies (I went home last week for my dad’s 90th birthday party) taste just fine. Coffee tastes salty, but black tea is fine. So, still some weirdnesses, but I’m good with that given how bad things tasted 6 weeks ago.

Mucositis is totally gone, including that annoying ulcer on my tongue! My tongue is no longer swollen or irritated.

My mom’s scale tells me I’m at 170 lbs again, so I’m totally back to normal on that front. It’s time to go back to cycling and the gym to get fit again, but the winter rains are here, and I’m lazy, so…

The only thing left to complain about is that my beard hasn’t grown back yet, nor is it showing any indication that it’s even thinking about it. That’s a shame, ‘cuz I look really funny without one.

I see my radiation oncologist this Thursday for the first time in a long time. I expect he’ll be very happy with the way things turned out.

Next PET scan should be late December. Fingers crossed.

I’m so glad to be back to normal!

2 1/2 weeks post treatment

The lump on my continues to slowly shrink. Hazel tells me hers was gone after four weeks, and I’m hoping to have the same results.

I’m no longer taking Tylenol, and use magic mouthwash infrequently. I haven’t used benzydamine very often, or regularly, for the past week.

Appetite is back! Most things no longer taste and smell bad, but fresh fruits and tomatoes still aren’t great. Cooked vegetables seem to be fine now. I can eat most meats, including simmered chicken, beef, and pork, and I can eat cheese and ham in wraps. Brown rice and pasta is fine.

Mucositis is almost entirely gone, most noticeably the ulcer on the side of my tongue. The top back of my tongue is still a little swollen and a bit sore when I eat.

I haven’t weighed myself for a while, but my belt indicates that I’m back to my base weight of 170. Still no new beard growth or hair growth on the back of my neck.

I feel almost normal again! It is so good to have my appetite back, and that most foods no longer taste bad. I am very grateful that I haven’t, really, had the problems that others have.

I’ve updated the body changes page.

2 weeks post-treatment

Just a note to all of you looking for information about what to expect during and after your treatments. It’s not ALWAYS as bad as so many say.

I was diagnosed with locally advanced base-of-tongue cancer in March 2019, when I was 63. “Locally advanced” means that the cancer has spread to one’s lymph nodes; it has spread, but not beyond the immediate region of the originating tumour. In my case, it had spread to my right, level II lymph nodes. Diagnosis took a while, because two fine needle aspirations of those lymph nodes brought out only “gunk”: dead cells. The final diagnosis was done via “open biopsy”, i.e. by snipping pieces off the base of my tongue in surgery and under the care of an anesthesiologist.

I declined chemotherapy after carefully investigating the side effects of chemo, the effects of chemo on top of radiation, the side effects of radiation only, and the survival and recurrence rates of both chemoradiation and radiation alone. Because I skipped chemo, my radiation oncologist put me on an accelerated schedule: 35 doses to 70 Gy over six weeks.

It’s Friday September 27, 2019, and I am now 2 weeks post-treatment. I never had any fatigue. I never had nausea. I did not suffer from ototoxicity, tinnitus, neuropathy, renal problems, or immuno-suppression problems. I have not had thrush. I did, and still do, have some mucositis low on my soft palate. I have an ulcer on the right side of my tongue, but it’s slowly disappearing. I wear a beard, and I lost most of the bottom half of it. I’ve discovered that I look a lot more like one of my younger brothers than I thought! My skin on my neck got pretty red, and then turned nut brown. Then the topmost layer of skin peeled off to show my normal colour. No weeping skin at all from radiation “burns”.

I’ve retained probably 95% of my saliva production, and have not had significant dry mouth problems.

I was warned that the 2 weeks following treatment would be the worst, but seriously, I haven’t had significant problems.

I can swallow anything I want. Some tomato-base products contain too much acid, and my mucositis feels that. I’ve lost my salt and sweet taste, so most food is no longer palatable. I deliberately put on 20 lbs of muscle on my thighs and glutes before treatment, and I’ve now lost that weight, so I’m back to my original 170 lbs (I’m 6’1″). I feel good. My wife and I are getting better at finding foods that taste just fine. Last night, for example, I had a big serving of simmered chicken in broth with brown rice. It seems that the only things I need to stay away from have a relatively high acid content or tannin. So no tomatoes and no grapes. I’m trying to eat more fruits, but many of them hide a high acid content behind the sugar that I can’t taste.

I recognize that many people suffer horribly from the side effects of Cisplatin + radiation. But I wanted to point out that some people actually do come through treatment relatively unscathed.

Tips:
1. Talk to both your medical and radiation oncologists about the pros and cons of chemo. Don’t go for chemo simply because it’s the normal thing to do.
2. Talk to your radiation oncologist, or a General Practitioner in Oncology (yeah, that’s a real position within my team) about taking drugs prophylactically to ward off mucositis. In my case, I started using benzydamine (aka Difflam and Tantum) from day one, and I think it helped.
3. If you have amalgam fillings, or any metal in your mouth really, talk to your dentist and to your radiation oncologist about having your dentist build a radiation stent to reduce the effects of “backscatter radiation”. I wish I’d known about these stents; I’m pretty sure it would have reduced the size of the ulcer I have on my tongue immediately next to a couple of teeth with amalgam fillings.

It’s good to do research. But don’t despair that your life will be hell; I thought it would be too, but that’s not the way things have turned out.

-Ken

Radiation is done!

Last radiation dose was on Friday September 13, 2019. Now I need to get through what everyone says are the two worst weeks: those immediately after treatment.

I’m not too worried about it. From all that I’ve read on sites, in blogs, and in emails from others who have been through this, I get the feeling that I’m nowhere near as bad off as most. My mucositis is annoying, but it doesn’t stop me from eating. My swallow function, although a bit stiffer, is just fine. My saliva production is down a bit, to the point where I get a dry mouth easily if I breathe through my mouth for too long, but it’s really not bad. So, I CAN eat just fine, and I have no fear that I will need a feeding tube.

It sure would be nice, though, if foods tasted better. Even milk now, a key ingredient in my protein shakes, tastes bad after a few swallows. My appetite is way down, even though my stomach growls that it’s hungry. So, mostly I drink high-calorie Ensure and similar drinks, and wash everything down with carbonated water. Immediately after eating, I rinse and gargle well with salt and baking soda; that manages to clear the gummy residue of the milk-based and nutritional drinks.

I have been managing to eat a few things that have been out of my diet for a while. Coffee doesn’t taste bad anymore, and is a good flavor-adding component now in most of my drinks. I always try to eat something solid after having a couple of protein/calorie drinks; last night I managed a very small slice of pizza, chased with water. Again, the coarseness of the food isn’t a problem; it’s just the taste. I had a veggie patty the other night that was mostly lentils and chick peas, and that would have been fine except for the pepper in it; the pepper burns/stings my tongue and soft palate. So, again, carbonated water.

Today is Sunday September 15, and I haven’t weighed myself for three days. I’m sure I’ve lost weight since my 177.3 lbs on Thursday. But thing’s will pick up eventually I’ve no doubt.

It looks to me as if the lump on the side of my neck is finally shrinking! That’s a nice improvement. The rest of the neck, skinwise, doesn’t look pretty though. It’s very red with many small and large pink spots where the redness has peeled away. No weeping, just visually weird looking. Again, I expect that’ll clear up reasonably quickly.

I take a 500 mg Tylenol each three hours, and magic mouthwash that I’m allowed to swallow, and benzydamine that I shouldn’t swallow, four times a day.

So, on we go.

I’ve updated the body changes page.