My 9-Year Cancerversary

This past December, I celebrated my 9-year cancerversary. While I am obviously thrilled to have lived way longer than I expected when diagnosed with stage IV lung cancer, this cancerversary was a bit bittersweet for me. I tried to write about it several times and never got very far - until today. I am now closer to 9 and a half years than 9 years!

Leading up to my cancerversary

Several months back, I found out that the coughing and other issues I had been dealing with all summer of 2022 were because my cancer was progressing. It wasn't pneumonia, as I originally assumed. Despite my initial bronchoscopy being negative for cancer, a repeat bronchoscopy a few months later confirmed that the antibiotics and steroids weren’t working. There WAS cancer growth, after all.

Post-lobectomy cancer scares

I enjoyed a lovely 2-and-1/2-year period of being NED (having no evidence of disease) after my lobectomy. Unfortunately, teeny tiny cancer cells must have evaded detection on scans and gotten around my targeted therapy medication, which I was still taking.

The mutations

At the time of my lobectomy, the removed tumor pathology showed an EGFR exon 19 mutation. I knew about this one, and it also showed a rare TRIM 24 BRAF fusion. There was no way to know if that BRAF fusion had been part of the tumor all along, or if it started to develop as a resistance mechanism.

However, I appeared to have no identifiable cancer cells, so my oncologist and I made the decision to not attempt to treat the BRAF fusion and hope it was all gone.

BRAF fusion mutation

Well, this is the same mutation that was detected when the tissue from my second bronchoscopy underwent biomarker testing. BRAF fusions (and other fusions) are sometimes difficult to find as resistance mechanisms. They require RNA testing in addition to DNA testing.

It’s unclear right now whether these fusions are truly rare. They can’t be found if few people are looking for them! I was fortunate to have had my entire tumor removed previously, through the lobectomy. My health care team knew to look for this BRAF fusion as the potential driver of my progression.

A new clinical trial for my lung cancer

Then there was a phase II clinical trial. It combined the oral EGFR inhibitor I have been taking since 2016 with an FDA-approved MEK inhibitor. This was promising for my exact type of BRAF fusion. The MEK inhibitor even showed up as the best targeted therapy option for the new fusion in my pathology reports.

Research has advanced. This was not the case in 2020 when I had my lobectomy. Unfortunately, however, I was not eligible for the clinical trial because it required first line use of my current third generation EGFR inhibitor and I had been on a second generation EGFR inhibitor before the third generation one was developed. Sigh…

Crafting my very own cancer clinical trial

After a great deal of effort, my oncology team and I were able to create an off-trial drug protocol for me that mimicked the clinical trial. This was initially very difficult to accomplish, since while the MEK inhibitor was FDA approved, it was FDA approved in an indication different from lung cancer.

I started this combination treatment in mid-September 2022. To be honest, by this time, I felt quite sick and was dealing with a good bit of coughing and shortness of breath.

I've seen some positive changes!

Luckily, the combination treatment has worked for me and I started to feel better within weeks. My scans have confirmed that the treatment has “stopped my progression in its tracks” according to my oncologist. I have now been on these two oral targeted medications for 7 months and am doing well, with fairly manageable side effects.

Appreciating stability when NED is no longer in the picture

While I wished to continue being NED at the time of my 9 year cancerversary, that did not happen. However, stable is good and I will take that status for now and keep my fingers crossed that it continues!

There is research being done on different types of BRAF mutations, including fusions. I'm hopeful that new options for treatment will be developed soon. In the meantime, I would love to hear from anyone else who has developed a BRAF fusion as a resistance mechanism to any targeted therapy and compare notes.

Editor’s Note: We are extremely saddened to say that on June 23, 2024, Ivy Elkins passed away. Ivy’s advocacy efforts and writing continue to reach many. She will be deeply missed.