My Cancer Story

Diagnosis

I was diagnosed with lung cancer in July 2024. It was already stage IV. Testing identified an ALK fusion, a finding that became central to my treatment decisions.

My records start with a chest CT on July 5, then fluid drained from around my left lung on July 6. More scans, testing, and a drainage catheter followed that month. Looking back at the calendar makes the amount of activity easier to see.

Treatment decisions

I started alectinib in August 2024. In early 2026, I had another biopsy and a course of focused radiation to a growing area in my left lung. The radiation ran from February 23 to March 4.

By July, the plan had changed. I started lorlatinib on July 20, 2026, after progression on alectinib.

My September 22 CT was stable compared with August 18. My local oncologist and Dana-Farber supported continuing lorlatinib. That's a dated result, not a prediction about what the next scan will show.

I don't see taking charge as doing everything I can find. It also means asking what a change would accomplish and understanding why we're keeping a treatment in place.

Testing and tissue

I had biopsies in January and July 2026. They did not produce equivalent datasets.

The January biopsy produced usable tumor DNA and RNA sequencing. The July sample had too little tumor for the whole-exome and whole-transcriptome sequencing in that Caris workup. Some other testing was completed. Calling the July sample simply “tested” would hide a useful distinction.

That difference mattered when I began exploring personalized vaccines. The raw Caris files available for that work came from January, even though one folder was labeled July. I had to check the specimen and case information.

I also had Guardant blood testing. The July report and the email describing the blood draw disagree on the exact collection day. I've kept that event at month-level precision here rather than picking a date.

For me, getting a report was only part of the job. I also needed to know what was actually tested, where the raw files were, what tissue remained, and who could release it.

Second opinions and useful people

I've had input from my local oncology team and Dana-Farber. A second opinion gives me another way to examine the decision in front of me. It doesn't mean replacing every person involved in my care.

In September 2026, Dana-Farber agreed that my scan was stable and supported continuing lorlatinib. We also discussed pursuing a personalized vaccine while the disease was controlled. They did not recommend a new biopsy solely for vaccine design at that point.

I've also connected with ALK Positive and Future of Cancer Care Today. Doctors, researchers, and other patients contribute different kinds of knowledge. I try to keep straight who's sharing an experience, who's describing research, and who's making a medical recommendation for me.

Research and additional options

I've explored clinical trials and personalized cancer vaccines alongside my standard treatment. An option on my research list is not a treatment I've received, and a conversation is not a trial slot.

Serova became my lead personalized mRNA vaccine path. We reviewed a proposed design on October 2, 2026. My local oncologist later said he was willing to participate if the necessary FDA access and hospital approval were in place.

As of my October 21 update, I was still working toward finalizing, manufacturing, and receiving the vaccine. Early 2027 was a hope, not a confirmed treatment date. I had not received a dose. My September scan result cannot be credited to a vaccine I hadn't received.

The practical work includes getting data to the right people, asking what they still need, comparing answers, and making sure the next step has an owner. I use AI to help organize information and prepare questions. I still check the original material and bring medical decisions to my doctors.

What I'd tell another patient

1. Ask the question. If you don't understand the answer, ask again in plain language.
2. Keep your reports and know where the original files are. “They sent it” and “the next person received it” are different things.
3. Follow up. Call about the scan. Ask who is handling the request. Find out what is holding it up.
4. Get another perspective when it would help you make a decision. Go in with a specific question.
5. Keep researched, planned, and received treatments separate. It's easy for a possibility to start sounding like a plan.

Don't assume someone else is tracking every loose end. You can take a more active role. That doesn't mean doing this alone, and it doesn't mean a worse outcome is your fault. People have different resources, support, and limits.

What I'd repeat and what I'm unsure about

I wouldn't do much differently if I started again. I'd still research, ask questions, seek input, and follow through.

Radiation is the decision I'm less sure about in hindsight. But at the time, it made sense. I don't want to rewrite that as though the answer was obvious then.

This is an ongoing account. I'll add what happens and correct what I get wrong.

Links

Sid Sijbrandij's openness about his own cancer was one of the things that pushed me to investigate more and share what I was learning. His site goes much deeper into the data: osteosarc.com.

This is my experience as a patient. Talk through medical decisions with your own care team.