I had my first PET scan today since starting therapy. While I am not scheduled to meet with my oncologist until next week, he offered to meet with us immediately after my scan to go through the preliminary results. We were so grateful for his offer—waiting six days to know the results would have been excruciating!
(Until next Tuesday, everything in this post is hedged as “preliminary”…allegedly)
Today’s PET scan evaluated the tumors in my trunk—from the base of my spine to the tops of my legs. It did not track the 11 tumors in my brain--cancer in the brain is better evaluated via MRI, which I’ll not undergo until late August.
There were three potential outcomes from today’s scan:
1. My cancer had progressed. That would mean this drug would not address my cancer and I would stop taking it. We would then move onto one of the other two remaining targeted therapy drugs.
2. Most of the cancer had gotten better, but individual tumors or lesions had gotten worse. That would mean those specific tumors were not caused by the same mutation and would not respond to the therapy. Those tumors would be treated in a different way (such as radiation).
3. All of the instances of cancer had gotten better.
I’ll cut to the chase. It’s number 3—everything got better!!
I have 27 tumors and lesions…on several vertebra the entire length of my spine, inside my lungs and the lymph nodes around my lungs, and in many locations through my sacrum, pelvis and hips.
ALL spots have improved. The largest two tumors are in my lungs and have gotten significantly better. The next largest tumors are on each hip and have gotten significantly better. The medium and small tumors all improved, and in some cases, are nearly invisible on the scan.
This is the best possible news we could have received at this point—knowing that my cancer will respond to alectinib, the first of three available targeted therapies. Now that we know it works, our focus becomes two part:
-for how long my cancer will respond to alectinib before it finds a way to mutate around it. We are hoping for a long runway on this drug
-that my body will tolerate alectinib. Though it may make an impact on their cancer, many people have to stop taking it because it can cause life-threatening liver toxicity. So, it destroys their cancer, but it also destroys their body. I will have liver panels drawn next week to evaluate how I am tolerating it, and those panels will be re-drawn every six weeks.
The other outstanding item that is causing some head-scratching among my oncology team is why I continue to have so much fluid collect in my chest. Especially given how significantly the tumors in my lungs have shrunk, they would have expected the pleural effusions to have resolved by now. Today my oncologist said, “I said I thought you’d need one more chest tap, and that was four taps ago.”
I am encouraged that the fluid accumulation seems to have slowed down. It has been two weeks since my last chest tap and I am just beginning to feel the fluid collect again. I will be able to hang on several more days before I’ll need a tap again. I need to be able to go 24 days between taps for our Europe trip, and I’m confident I’ll be able to make that happen.
The Baldwins are celebrating tonight. We were thrilled to share the good news with Sasha and Kira. And Brad and I opened a bottle of Silver Oak cabernet. I’m having one illegal glass. Shhhhhhh!!!
We received very, very good news today. Thanks for your ongoing support. It means so much to us.