Actually, I erupted some time ago, but I’m finally getting around to posting about it.
Based on my dermatologist’s best guess, which is based on biopsy results, I’m covered in fixed drug eruptions. Thankfully, in my case, they’re so far mostly confined to skin that has very little hair, so my feet, underarms, thighs, and the backs of my knees have it the worst. I even have one between my fingers. Also thankfully, it’s winter. I look like I’m covered in chicken pox.
On the plus side, if they’re still around in short-sleeve weather, I suppose they’ll be helpful at keeping people away in public spaces. I’ll just pretend to scratch a lot, and hope people assume whatever I have is contagious…
I’m told that when they go away (whenever I stop taking the drug that’s causing them, which could be anything) that I’ll be left with patchy, discolored skin. Awesome! I suppose that’s hundreds of new excuses to cover them up with pretty tattoos.
Speaking of which, it’s about time for my annual fuck skin cancer, skin reclaiming tattoo, and these annoying spots are interfering with my original plan.
Thursday marked my last of the ippi/nivo infusions. My last super long day spent hooked up to an IV pump. Yay! Now if my colon will only survive that latest dose…
I get CT scans and a brain MRI on August 27th. My next appointment after that is Septtember 1. If my scans show tumor shrinkage, or even tumor stasis (meaning the tumors are holding steady), I get put on just the one, newer drug (nivo) starting that day. This moves me into the second phase of the trial, and it requires infusions every other week for about a year because it’s so new they don’t know how long to give it for. Odds are 50% for shrinkage and higher (dunno how much higher) for stasis.
If it doesn’t look like the drugs have helped, I’m probably going to be pulled off them. At that point, I’m guessing they’ll put me on the BRAF drugs. Those have 90% odds of shrinking the tumors, but they only work short term so they’re the last resort. Basically, they buy time.
In related news, we found out a little more about why the study drugs take so damn long to be processed by the pharmacy. They require a million sign-offs, including someone from the drug company itself. So the drugs can just be sitting around for a while, waiting for someone’s electronic signature. Frustrating.
A present from my wonderful sister-in-law! This must be worn while receiving my next round of Kill Betty Juice. May Betty tremble in fear. My army now has a uniform.
Now to continue the trend, I think we need a Betty Must Die the lunchbox, the breakfast cereal, and the flamethrower. (Bonus points if you get the reference.)
I’m not sure how well this will go over with some people, but I’ve wanted to do it for a long time.
All things considered, there’s no time like the present. Especially when there’s a chance my hair might all fall out again soon.
For all the health updates you probably don’t really want to know. Also, a place for me to share words and over-share medical stuff.
Want more reasons? Check out the pages above. And here, have a cute photo. Notice I had an intact left ear, which means this photo is old.