Hi all! It’s been a bit since I last updated on my health, so I thought I’d share what’s going on. I’m currently sitting in a infusion chair at my oncologist’s office because today is my first day on my new treatment: Keytruda and Yervoy. If this post suddenly turns weird like I’ve lost neurological function, somebody buzz the nurse for me, will you?
As you may have seen on Twitter, I had gamma knife on my brain last month, because I’ve got a zillion tiny mets in there. OK, not a zillion, but like, 50? Now, most doctors would do whole brain radiation with that many brain mets, but I flat out refuse to do WBR unless it’s an absolute last resort. I don’t have any symptoms from my tiny mets, and WBR can cause cognitive issues. So fuck that, we’re saving that for when I really need it. Instead, we zapped 26 of those little fuckers in my brain, the ones that were growing and/or were likely to cause symptoms if they grew. It went fine, although now I have a couple bald spots from the mets that were close to the surface. Right now my hair is curly so it hides the bald spots.
Then I had 5 days of traditional radiation on my lung met (actually a cluster of lymph nodes in there rather than the lung tissue itself) that’s given me a chronic cough, as well as the met in my humerus. It’s at the very top of my humerus and it was causing a bunch of pain. 5 days was short enough that I didn’t have skin problems from the radiation, though fatigue has been a challenge. Then again, when isn’t fatigue a challenge for me?
And, now I start on Keytruda/Yervoy! Immunotherapy is supposed to work even better after you’ve had radiation, and Keytruda’s the drug that cleared Jimmy Carter’s brain mets, so I’m really hopeful it’ll work as well for me. Often immunotherapy drugs like Keytruda and Yervoy don’t work great on breast cancer because it tends to be less immunogenic. In fact, there was some pretty disappointing data out of ASCO this year on Keytruda in triple negative breast cancer. But we all know my cancer doesn’t work regular breast cancer, because it’s neuroendocrine breast cancer. And, cancers with big mutational burdens like mine tend to respond better to immunotherapy than those with low mutational burdens. I read a study recently about a woman with metastatic neuroendocrine ovarian cancer, and radiation plus Keytruda got her to NED in 4 months, and kept her NED even after she went off Keytruda due to side effects. I desperately want that to be me.
Getting the drugs was an administrative headache, of course. Since neither drug is approved for breast cancer, I had to go through the patient assistance process again. Merck’s process was super easy and fast and we had approval for Keytruda pretty quick. With Bristol Meyers Squibb, there were some paperwork headaches, plus a complication created by insurance. So, my insurance doesn’t require preauthorization for Yervoy, which means they’d pay for it–BUT. Because I’d be getting it off label, it’s entirely possible they’d come back later and try to get their money out of me. And I can think of a lot of things I’d rather spend $55,000 on than Yervoy. Like two years of my mortgage payments. But, the financial person at my oncologist’s office is tough and smart and she handled getting my insurance to realize they didn’t want to pay for off-label drugs, which got BMS to give me the drug for free.
So, that’s where I’m at. Everyone keep you fingers crossed that I’m one of the lucky ones who responds to immunotherapy. And, as always, I’m so grateful for all the support I get from all of you! Your words really mean a lot to me.