Week 14 Early Side-Effects
I am now into Week 7 after my chemoradiation therapy for oropharyngeal cancer finished, and have written about some of the on-going side effects, including increased pain from peak zapping, which has now subsided considerably, although recent flare ups have occurred. The symptoms I talk about below are termed early side-effects, in that they can occur both during treatment and in the few months after. Late side-effects occur down the line, many months, often years afterwards, as the physiological toll of intense radiotherapy impacts on blood vessels, organ function etc. These all look rather scary (gulp), so I’ll leave these for a future blog post.
Salivary gland hypofunction
For a couple of weeks now I have been experiencing quite severe xerostomia, where the main symptom is just lack of saliva. I seem to have stopped producing any, whatsoever.
[this technical section is a bit "dry" 🤣]
Xerostomia is the subjective sensation of a dry mouth, and is a common feature of salivary gland dysfunction (SGD), especially hypofunction (SGH). Treatment for head and neck cancer, including oropharyngeal cancer, Sjögren’s syndrome, and certain medications, are the leading causes of SGH, physiologically defined as when the flow rate of unstimulated saliva falls below ≤0.1 mL/min (normally it is about 0.3 – 0.4 mL/min).
This has meant that every time I eat something, it just forms this bolus in my mouth with nowhere to go. So I have to drink water all the time in order for me to swallow any food. Which means I have to have only very small mouthfuls as well, which makes me not a great dining partner. In the great scheme of things, this is all fine. The main drawback is waking up every hour of the night to drink some water to relieve the dryness, which is fucking up my sleep routine even more than my cat (!!) (sorry Lilly!), and may be contributing to the increasing fatigue I’ve been experiencing since the weekend. Xerostomia is a classic early side-effect which affects almost 100% of people under-doing head and neck radiotherapy, but it can last for months to years. And for some people, xerostomia may be a permanent way of life.
*update: I've just had delivered a box of XyliMelts, which I can stick between my gum and cheek overnight to stimulate saliva. Fingers crossed this works :-)
I wrote before about the fatigue that can set in during radiation therapy, but I put a lot of this down to travelling to Barts every day for treatment. This weekend, a new fatigue has set in, that feels like it’s ravished my body from the inside out. Fatigue is one of the most common side effects of radiation therapy, and doesn’t just mean I'm feeling physically tired, but it makes me emotionally and mentally tired too, so even the simplest of tasks, like having a shower, or even eating, can be effortful. In fact, being tired doesn’t really come into it. I equate being tired with nice feelings, like after a long run, or snuggling into bed. This type of fatigue means often I don’t want to get out of bed ☹️
But I know if will be temporary. At the moment, the fatigue is likely related to my body still repairing itself, and I know I have to take things easy. I shouldn’t discount the mental low I’m feeling as well, post treatment, although it’s hard to say if the fatigue is causing the low, or the low is causing the fatigue. And this is having a negative impact on David as well, as I become less rational.
I’d never thought I’d say this, but I’ve been lucky having glandular fever (mononucleosis) in that I know that fatigue feels like and what to do / what not to do. Out is my ambition for doing a 10k run any time soon, but I have put together a much shortened gym programme to try and do every day, on top of my daily walks. If you remember my post on #RunningWithCancer, the field of exercise-oncology has shown major benefits to recovery. I use my daily walks to just either switch off for a bit, get some fresh air, and more recently I’ve started to teach myself lichenology, an old passion of mine from studying botany in the 1980s. So I’m now going round climbing and peering at lots of trees, trying to identify the lichen on them, and even letting David into the action 😃
And the home gym routine is important for building muscle, which I’ve lost loads of, contributing to weight-loss. Academic work while I'm fatigued is rather more difficult, but I’m trying to balance what is possible, and not take on too many responsibilities.
In my last post I mentioned that I was now eating ‘normally’ again, in that I can now eat most things through my mouth, and I’ve not used the PEG tube for over 10 days now. Yay! The downside is that I’ve only managed to eat about 2,200 calories a day, which for me would be a lot under normal circumstances. But I’m also still losing weight, which I find hard to believe but the scales, I guess, don’t lie. So I'm now supplementing all my meals with the Fresubin I was reliant on for several weeks through my tube. Hopefully by upping my calorie intake to over 2,600 cals I’ll stem the weight-loss.
Interestingly, a study which looked at weight loss amongst patients receiving radiation therapy found that the average weight loss for head and neck cancer patients was 3.25 ± 5.3 kg, so actually my weight loss seems to be higher than average, despite the large variation in the data. In fact, the figure quoted here is a lot less than for other people I’ve chatted to online who have also gone through radiation therapy.
So that’s it for now. Just to say that I think the recovery is almost as difficult as the treatment, and the effects certainly don’t end when treatment ends.