Protocol 3 – Day 12 (3rd DON dose and PET Scan)

My third DON dose on Monday went smoothly. I opted for a 1.1 mg/kg dosage, which did make me a bit nauseous during the procedure, but thankfully, there was no gagging or foaming. It’s reassuring when things go without a hitch as long as I continue to feel the therapeutic effects. After the hyperbaric oxygen therapy (HBOT), I found myself somewhat distracted for about an hour. Then, on my drive home, I started feeling queasy with that unpleasant DON taste in my mouth. I ended up eating to try and get rid of it, but no matter how much I ate, the feeling stuck around, occasionally causing me to gag. But overall, I’m satisfied with the results. Balancing the proper DON dosage is tricky – too little doesn’t work, and too much makes you sick. With no official dosing guidelines, I’m pretty much winging it.

Tuesday turned into a long day of travel. I had to head to Burnaby for my 1:45 pm PET scan appointment. Given the unpredictable BC Ferries schedule, I decided to take the 7 am ferry instead of risking any issues with the 9 am one. That meant I had a few hours to kill on the mainland. The PET scan took 2 hours from check-in to check-out, and I caught the 7 pm ferry back home. It turned into a 14-hour day, and I was completely drained. I slept all night and woke up around 8:30 am, sitting on the couch. I think I stared at the wall for about 30 minutes before falling back asleep for another 4 hours on the couch without moving. It seems I had to tire myself out to kick off my “Do Nothing December.”

The PET scan was a new experience, so I wasn’t sure what to expect. They inject you with radioactive glucose based on your weight, and then you wait for an hour for it to circulate throughout your body. Cancerous cells have a particular affinity for this glucose, except for the brain and heart, which also demand a fair share but nothing like cancer cells (yet your oncologist will still say that diet makes no difference). Then, you hop into the PET scanner, positioned like you would be for a CT scan, with your arms raised overhead. You lie still for 20 minutes during the scan, and I took that time to sneak in a nap.

Afterward, there’s another 30-minute wait while they prepare a flash drive containing all the images and an application for reviewing them in 3D. I admit I had no clue how to interpret PET scan images. I couldn’t even figure out how to rotate them to look at them from a different angle. It was like they took a bunch of pictures, slice by slice, from “eyes to thighs” while I was lying down, so you are looking at your body from a top-down view. I could identify my lungs, spine, pelvis, and legs, but the rest was a bit of a mystery. I did notice some illuminated spots on my torso, but I couldn’t pinpoint their exact location. It was fascinating to look at, but I’m eagerly waiting for the radiologist’s report. They should be faxing it to my oncologist by the end of this week, and I’ll receive a hard copy in the mail, so I should have it by next week.

I’m interested in a few things in the PET scan results:

  1. I’m eager to know the condition of my liver, primarily if that unidentified spot is related to fat or cancer.
  2. I wonder if all my known tumour locations are active or if some are NED.
  3. I’m interested in whether any quantitative values are associated with the cancerous areas and, if so, what they are.

Anyway, tomorrow is another DON day. Last night, I ate well, and I will fast until after my session tomorrow, which is DON dose 4 of Protocol 3.

Comments

  1. This is fascinating Allison. And it sounds like, do nothing December, is a very busy month. I love you.

  2. Thank you for sharing this information and taking the time to do it. Even when you are so exhausted. Love you a lot! You are the smartest person I have ever met. By smart, I mean it in many different ways.

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