AE0BQ cancer update

Posted on by AE0BQ

Well, I’m not dead.

I recently ended treatment, albeit a week early, and am slowly recovering from the debilitating effects. I decided to end treatment a week early because the target radiation dose was 70 Gray, and there are trials running 50 Gray for the exact same type of cancer. My cumulative dose was already 60 Gray.

The biggest problem was chronic nausea leading to dehydration, malnutrition, and fatigue. Lost 50 pounds (good for heart, BP) and was on IV fluids (saline gravity drip) for a time. Had a bit of pain when swallowing as well. Spent most of the time sleeping.

Perhaps the worst aspect is the high-viscosity mucus that accumulates in the throat. Normally reflexive swallowing clears saliva, but apparently that doesn’t happen due to the high viscosity, and the swallowing pain is probably a factor as well. When it accumulates, it triggers vomiting along with potential for aspiration. I’ve aspirated stomach acid a few times, very unpleasant and painful, but thankfully did not lead to pneumonia, just some acute laryngitis that cleared on its own. Anyway, I found that by sleeping on my right side, the gurgling wakes me up, then I do a deep clear (i.e. hawk a giant loogie) and go back to sleep. Sleeping on the left side tends to result in aspiration into the laryngeal vestibule, which triggers vomiting and potential aspiration. TMI, right?

Daily intake now consists of an short-term anti-emetic (ondansetron) followed by a Boost Plus, and 500 mL water, 2x a day. So only about 700 calories, but I will be adding another boost to get the calories up to 1000-ish. Swallowing pain subsided a few days ago, so I am now able to drink normally, which is key, because hydration is far more critical than nutrition!

Neck burn was bad, now almost healed. Hair loss is only my beard (chin and neck). Olfactory works, but taste is completely borked, and will be for months. Oh well, it’s delicious vanilla gunk and bottled water for now.

Next milestone is a PET scan in December, then another in March. If both of those show no sign of recurrence, I’m probably ok as far as the cancer itself, but still have to get follow-up PET scans every year…forever.