Today marks cycle 8 of my every-three-week chemo schedule. I’m tolerating it pretty well, I’m happy to say. The antiemetics work wonders, and I just plan for about a week of being super wiped out, so it is manageable.
Oh, did I mention that I had an allergic reaction to the carboplatin during my fourth infusion? Thankfully it was caught and reversed quickly, so no big deal. But it does mean that I cannot have carboplatin again. I was only scheduled to have 4 rounds of it anyway this time, but it is a little scary knowing that it is out of the arsenal now.
Also, fluid has slowly been building up around my right lung (the good lung) so I had a thoracentesis and they drained a liter of fluid. Sigh. I continue to drain my left lung at home every three days, so the fun goes on.
In some very exciting and hopeful news, my wizard from Colorado told me that he has been growing my cancer cells in his lab and he thinks he knows why my cancer has stopped responding to the TKIs (yay research!!). It seems my cancer has developed a resistance called IGF1R, Insulin Like Growth Factor 1 Receptor. AND there is a TKI that targets this, ceritinib.
Commence the hoop jumping! These drugs aren’t cheap, so step one was getting it approved by insurance (it is approved for ALK, not ROS1) which we did! But the copay was really high, so the hospital helped me apply for a program through the manufacturer. After lots of paperwork, hours on the phone, and shipping delays, I finally got the meds on Monday. The moral of the story for my fellow patients is that there is usually work around these high prices, so don’t give up.
The plan now is to continue on with the chemo in addition to my 5th TKI. While ceritinib worked great for my cells in the lab, there is no guarantee that it will work as well in my body, so the safer route is to keep the chemo going and add the new med.
To recap my years spent on TKIs:
1. Crizotinib = November 2013-December 2017 (4 years and 2 months)
2. Entrectinib = December 2017-October 2018 (11 months)
3. Lorlatinib = November 2018-January 2019 (3 months)
4. TPX-0005 / Repotrectinib = February 2019-July 2020 (18 months)
5. Ceritinib = January 2021-???
Let’s hope that my wizard’s theory is correct, and that ceritinib will give me a nice, long run.
