It’s been a while since I posted an update regarding Tommy’s treatment! A lot has happened in the past two months, and we are in a great spot, so I wanted to fill you all in with what we’ve been up to.
A few weeks ago, I shared about our decision to change hospitals and oncological teams (read HERE if you want more info on that!). We have been extremely happy with our decision, and have found a new home and are very comfortable with our team and their recommendations. I say recommendations, rather than decisions because a huge thing we have learned is that doctors are there to help, but the decisions are up to you. They are helpers, not tellers, and remembering that is key.
After meeting with the tumor board, our chief oncologist recommended we try a clinical trial that combined immunotherapy with a targeted agent. He told us this was the best option in his opinion but was upfront with us about the likelihood of success. It’s hard to predict results with clinical trials, but from his experience, he thought there could be around a 15% chance of a good response to the drug. The side effects of immunotherapy are typically very tolerable, and often patients experience no side effects at all. Our original oncological team had essentially told us we had a 0% chance of clinical trial success, so even though 15% sounds low, it was 15% better and nothing, so we decided to take it!
The treatment regimen consisted of one pill every day and a thirty-minute immunotherapy infusion once every three weeks. Relatively low key, as far as treatments go, and we were very excited to avoid going the chemo route. Tommy’s last round of chemo (this past spring) was really tough, and we were glad to be trying something different. Immunotherapy is the coolest, you guys. There are a lot of articles out there claiming immunotherapy is the cancer treatment of the future, expected to one day take precedence over chemotherapy. The trial we were planning to join has been tested with other cancers but is still relatively new as an esophageal cancer treatment.
But I thought the cancer was found in his lungs? Doesn’t he now have lung cancer? I had these questions too, but no, technically these are metastases of esophageal cancer that are found in his lungs. We had a test confirm that these spots had traveled long before, so they were not “new” per se, but had likely been there from the time of the original diagnoses a year and a half ago; just too small to see on a scan. This is confusing but was explained to us as being a positive thing.
The first few weeks of treatment went so smoothly, that at our first check-in appointment, we asked if there was a chance Tommy was given a placebo. The doctors were very quick to assure us he was given the actual treatment, but we were still shocked at how little side effects there were!
He continued the treatment for 7 weeks. Yesterday, he had a CT scan to see if there was any success, or if we needed to try something different. The doctors were hoping to see stability, and we were hoping for the best, but honestly weren’t expecting it. The week leading up to yesterday was a roller coaster. If you have ever experienced “scanxiety”, you know this is the most difficult part. Not knowing if the past seven weeks were a waste, or if the treatment made any difference at all is terrifying. Luckily for us, as soon as the doctor came in the room he said, “Your scans look amazing". We could barely believe it, but it turns out not only was there no new growth, but the existing tumors had also shrunk by 20%.
Overjoyed is an understatement. Having the opportunity to call our friends and family today to share good news was such a gift. We have been floating all day, and are still pinching ourselves.
So what’s next? We are going to continue this treatment, and hope for further success. The fact that it’s tolerable and it’s WORKING makes the next nine weeks look pretty sweet. We don’t have to start heavy chemo immediately (one possibility). We don’t have to immediately go back to the drawing board and fight to join a clinical trial (another possibility). We didn’t have to hear difficult news and put on brave faces and start game-planning again. WE GET TO CELEBRATE THIS VICTORY!
How are we so lucky?? In other news, some very generous family members made a trip to London possible for us last month. We got to spend 10 beautiful days together, exploring, eating, seeing shows, and generally forgetting about all this cancer stuff. It was such a blessing, and we couldn’t be more grateful.
Some really exciting opportunities are on the horizon, and I can’t wait to share them with you soon! In the meantime, April is Esophageal Cancer Awareness Month, and Tommy had launched an awareness project. He had wristbands made that say “Treat Heartburn. Prevent Cancer”, and we (and now hundreds of others!) are going to wear them all month long in April. Early detection saves lives, especially with esophageal cancer. Untreated heartburn literally causes cancer, and a trip to your doctor to treat it can save your life. If you would like to join us, VENMO $2 to Tommy (his Venmo name is @tommywalker), along with your address, and we will ship one to you! We have another order coming this week, so there are plenty to go around. Join us!
As far as our “regular lives”, Tommy is in full swing with his spring semester teaching! He teaches theatre and directs shows in several different schools that lack a drama department. He is loving the classes he has right now, and is gearing up for several performances soon! I am working full time on Better and Company. I have no idea how I got to this point, but I am absolutely loving it. I feel connected to the cancer world, and am getting to be creative at the same time. If you are looking for unique get well cards, cancer support gifts, and more, check out my shops! (SHOP ETSY HERE and GIFT SHOP HERE).
That’s all for now! Thank you for your support and encouragement the past few months, and for celebrating the good times with us. Love, Jessie