I mentioned in one of my last posts that I may have some good news to share. I’ve been feeling pretty good this past month and had a suspicion that this latest med change (Vandetanib) is working as an effective treatment. But, I needed to get my latest labs and scans before I could confirm anything. Well, it’s kind of a mixed bag and little something special sprinkled on top.. or stuffed in the middle? Let me explain.
First, yes I am feeling better. And that’s a win no matter how you look it. My daily life has been pretty good. The side effects from the Vandetanib have been much more tolerable than any of the past medications. My major complaints are irritated skin on my head, face and neck and some major dizziness in the evening. The skin stuff sucks, especially because it brings back nightmares of my teenage acne years, but I have some prescription cream which seems to help for the most part. The dizziness sucks. Really sucks. Pretty much every day from 5pm to 9pm I get this foggy head, blurry vision, dizziness that makes me not want to move my head at all. I haven’t found anything to help combat it yet, and so I just spend those 3 or 4 hours every evening sitting in one place and trying not to move my head. Sucks even more because it perfectly coincides with the time I spend with my kids in the evening after school. 🙁
But despite all that, it’s still better than how I felt on the other meds. The rest of my day I’m pretty happy. And the puffiness and pain around my neck has subsided almost completely. And I’m gaining weight! Having a cup of cocoa every night before bed doesn’t hurt. 🙂
But what about the scans and labs!?
So this is where it gets a little tricky. Some markers are up and some are down. My calcitnonin has dropped (good thing) but it’s still over 15,000 (bad thing). My CEA (general cancer markers) are way up, like way up (bad thing). My scans show no new tumor growth (good thing). The overall size of the tumors and diseased lymph nodes haven’t shrunk, but have stabilized (good thing-ish). My last scan made it look like I was on track to have some lymph nodes break through the skin on my neck, which would be gross. That’s not happening (good thing). So, overall, mixed bag (good and bad things).
Extra special thing
But then there is the cool thing that happened that makes me extra special. As the cancer forms and breaks down in the lymph nodes it leaves little holes and pockets in the center of the tumor. Basically, it dies from the center outwards. Like little donuts. This is normal and expected, and my scans have showed this typical process — up until now. Now, those little holes are filling in. And we don’t know why. Both my doctor and the radiologist, who have decades of experience, have never seen this before. Never. Yay? We don’t know why the cancer is filling in from the inside out, and we don’t know what it’s filling with. More cancer? Normal flesh? Bavarian cream? We don’t know. The cancer isn’t getting bigger but it’s becoming more dense. Hi, I’m extra special and a little dense. I’ll keep you posted on this little adventure as I know more.
Traveling to Maine
I’m still planning to travel to Maine next week to spend the holidays with family. My doctor supports my decision to travel. As she said, “we don’t know how many Christmases you have left.” But she also put the fear of god in me when she explained that Covid + Cancer Matt = Really REALLY BAD. It’s important for me to go, but I’m going to be really careful. I apologize to those who I will not visit while I’m up. I know it’s hard for me to be so close and still not be able to visit you.
Next Steps
Since we are getting mixed results from scans and labs, my doctor has recommended that I start immunotherapy soon. Maybe in conjunction with my dose of Vandetanib. I’m going to wait until after the holidays though. I don’t want to be traveling and experimenting with new drugs and new side-effects. So, new labs and new drugs coming in January.
Merry Freakin’ Christmas
Hey – it’s Christmas! Let’s do it up right and enjoy ourselves. There is a lot we can be sad about. And we can grumble about 2020 being the worst year EVER. But let’s not forget that we are still alive. Surround yourself with people you love and have a cup of cocoa. That’s what I’m going to do.
Merry Christmas. Much love to you all!
