{"title":"My Cancer Story","summary":"The decisions, research, questions, phone calls, and follow-through behind my cancer care. What I did, why I did it, and what I am still figuring out.","body":"I've been a founder and entrepreneur my whole life. I run at problems. Cancer didn't change that.\n\nTaking charge of my care came fairly naturally. But you don't need to have built a company to ask a question, request your records, or call again about getting a scan moved up. You can decide to take action.\n\nThis is what I've done so far. Some of it is medicine. A surprising amount is research, paperwork, and following up. None of it guarantees an outcome. It's how I approach the problem in front of me.\n\n## Diagnosis\n\nI 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.\n\nMy 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.\n\n[If cancer just hit your family, start here.](/cancer/resources/a-place-to-begin/)\n\n## Treatment decisions\n\nI 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.\n\nBy July, the plan had changed. I started lorlatinib on July 20, 2026, after progression on alectinib.\n\nMy 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.\n\nI 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.\n\n## Testing and tissue\n\nI had biopsies in January and July 2026. They did not produce equivalent datasets.\n\nThe 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.\n\nThat 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.\n\nI 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.\n\nFor 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.\n\n[Tumor testing](/cancer/resources/tumor-testing/) · [Before a biopsy, ask about the tissue](/cancer/resources/preserve-tissue/) · [Get your records and raw data](/cancer/resources/medical-records/)\n\n## Second opinions and useful people\n\nI'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.\n\nIn 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.\n\nI'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.\n\n[Make a second opinion useful](/cancer/resources/get-a-second-opinion/) · [Find people who know your cancer](/cancer/resources/find-support/)\n\n## Research and additional options\n\nI'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.\n\nSerova 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.\n\nAs 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.\n\nThe 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.\n\n[Find trials worth asking about](/cancer/resources/clinical-trials/) · [Personalized cancer vaccines](/cancer/resources/cancer-vaccines/) · [How I use AI](/cancer/resources/ai-cancer-research/)\n\n## What I'd tell another patient\n\n1. Ask the question. If you don't understand the answer, ask again in plain language.\n2. Keep your reports and know where the original files are. “They sent it” and “the next person received it” are different things.\n3. Follow up. Call about the scan. Ask who is handling the request. Find out what is holding it up.\n4. Get another perspective when it would help you make a decision. Go in with a specific question.\n5. Keep researched, planned, and received treatments separate. It's easy for a possibility to start sounding like a plan.\n\nDon'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.\n\n## What I'd repeat and what I'm unsure about\n\nI wouldn't do much differently if I started again. I'd still research, ask questions, seek input, and follow through.\n\n> 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.\n\nThis is an ongoing account. I'll add what happens and correct what I get wrong.\n\n## Links\n\nSid 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](https://osteosarc.com/).\n\nThis is my experience as a patient. Talk through medical decisions with your own care team.","timeline":{"asOf":"2026-10-21","currentSummary":"My September 22 CT was stable compared with August 18. In my October 21 update, I reported that lorlatinib still seemed to be working, with another scan planned for early December. I was pursuing a personalized mRNA vaccine but had not received a dose.","coverage":"Selected dated events from July 2024 through October 21, 2026. The broader MyChart counts above run through October 26 and include events not yet individually listed here. This timeline is not the complete workload; researched and planned options are labeled separately.","activitySummary":{"periodStart":"2024-07-01","periodEnd":"2026-10-26","sourceLabel":"MyChart activity-count export, reviewed October 26, 2026.","note":"These are overlapping records from my connected MyChart history, including general health care. A scan can appear as a result, visit, and message. These numbers are not added together, and they are not all separate procedures, doctor consultations, or days of travel.","sourceIds":["mychart-counts"],"metrics":[{"id":"results","label":"test-result entries","count":294,"detail":"Portal result-list entries from July 1, 2024 onward. Includes lab panels, imaging, pathology and other result types. This is not 294 blood draws."},{"id":"visits","label":"visit records","count":115,"detail":"110 non-video records plus 5 video visits, after excluding four noncompleted/rescheduled entries and two exact visible duplicates. Includes lab, outpatient, nursing, hospital and emergency records, not just doctor consultations."},{"id":"imaging","label":"CT, MRI & PET studies","count":23,"detail":"15 diagnostic CT studies, 5 brain MRIs and 3 PET/CTs. Excludes imported/reference images and PET adjunct entries. The CT component of a PET/CT is not counted again among the 15 CT studies."},{"id":"messages","label":"message-folder entries","count":379,"detail":"107 conversation entries, 209 scheduling entries and 63 automated entries, using the latest displayed activity date. This is not a count of individual messages or substantive doctor conversations."}],"breakdown":[{"label":"Routine lab panels","detail":"34 CBC-with-differential panels and 32 comprehensive metabolic panels. A panel can contain many result values. These are not counts of separate blood draws."},{"label":"Other imaging","detail":"11 chest X-ray study records and 1 abdominal ultrasound, outside the 23 CT/MRI/PET studies above."},{"label":"Biopsies and radiation","detail":"2 CT-guided lung-biopsy procedure records. 5 radiation-treatment dates, all belonging to the one radiation course shown in the timeline."},{"label":"Visit days and telephone records","detail":"The 110 non-video visit records fall on 79 calendar dates. The 5 video visits and 39 telephone encounter records are separate categories. The 79 dates are not a verified count of travel days."},{"label":"What this misses","detail":"Only records exposed by the connected portal systems were counted. This is not a complete account of research, calls, email, texts, external portals, or work outside MyChart."}]},"events":[{"id":"diagnosis","date":"2024-07","category":"diagnosis","status":"completed","milestone":true,"title":"Diagnosed with lung cancer","summary":"My diagnosis was stage IV lung cancer. ALK testing became central to the treatment plan.","storyAnchor":"section-diagnosis","sourceIds":["experience"]},{"id":"initial-ct","date":"2024-07-05","category":"scan","status":"completed","milestone":false,"title":"Initial chest CT","summary":"The CT showed a large left pleural effusion.","sourceIds":["experience"]},{"id":"pleural-fluid","date":"2024-07-06","category":"test","status":"completed","milestone":false,"title":"Pleural fluid drained and sampled","summary":"Fluid from around my left lung was collected for diagnostic work.","storyAnchor":"section-diagnosis","sourceIds":["experience"]},{"id":"baseline-ct","date":"2024-07-26","category":"scan","status":"completed","milestone":false,"title":"CT of chest, abdomen and pelvis","summary":"Part of my initial imaging workup.","sourceIds":["experience"]},{"id":"baseline-pet","date":"2024-07-29","category":"scan","status":"completed","milestone":false,"title":"PET/CT","summary":"Part of my initial imaging workup.","sourceIds":["experience"]},{"id":"baseline-brain-mri","date":"2024-07-29","category":"scan","status":"completed","milestone":false,"title":"Baseline brain MRI","summary":"A separate study from the PET/CT that day.","sourceIds":["experience"]},{"id":"pleurx","date":"2024-07-31","category":"test","status":"completed","milestone":false,"title":"PleurX catheter placed","summary":"A drainage catheter was placed on my left side.","sourceIds":["experience"]},{"id":"alectinib","date":"2024-08","endDate":"2026-07-20","category":"treatment","status":"completed","milestone":true,"title":"Started alectinib","summary":"This was my first ALK-directed treatment. I stayed on it until the switch to lorlatinib in July 2026.","storyAnchor":"section-treatment-decisions","sourceIds":["experience"]},{"id":"ct-oct-2024","date":"2024-10-02","category":"scan","status":"completed","milestone":false,"title":"CT of chest, abdomen and pelvis","summary":"This study is listed in my medical chronology.","sourceIds":["experience"]},{"id":"ct-jan-2025","date":"2025-01-07","category":"scan","status":"completed","milestone":false,"title":"CT of chest, abdomen and pelvis","summary":"This study is listed in my medical chronology.","sourceIds":["experience"]},{"id":"ct-mar-2025","date":"2025-03-28","category":"scan","status":"completed","milestone":false,"title":"CT of chest, abdomen and pelvis","summary":"This study is listed in my medical chronology.","sourceIds":["experience"]},{"id":"mri-mar-2025","date":"2025-03-28","category":"scan","status":"completed","milestone":false,"title":"Brain MRI","summary":"This study is listed in my medical chronology.","sourceIds":["experience"]},{"id":"ct-jul-2025","date":"2025-07-08","category":"scan","status":"completed","milestone":false,"title":"CT of chest, abdomen and pelvis","summary":"This study is listed in my medical chronology.","sourceIds":["experience"]},{"id":"ct-oct-2025","date":"2025-10-07","category":"scan","status":"completed","milestone":false,"title":"CT of chest, abdomen and pelvis","summary":"This study is listed in my medical chronology.","sourceIds":["experience"]},{"id":"mri-oct-2025","date":"2025-10-07","category":"scan","status":"completed","milestone":false,"title":"Brain MRI","summary":"This study is listed in my medical chronology.","sourceIds":["experience"]},{"id":"ct-jan-2026","date":"2026-01-06","category":"scan","status":"completed","milestone":false,"title":"CT of chest, abdomen and pelvis","summary":"This study is listed in my medical chronology.","sourceIds":["experience"]},{"id":"pet-jan-2026","date":"2026-01-13","category":"scan","status":"completed","milestone":false,"title":"PET/CT","summary":"This study is listed in my medical chronology.","sourceIds":["experience"]},{"id":"mri-jan-2026","date":"2026-01-26","category":"scan","status":"completed","milestone":false,"title":"Brain MRI","summary":"This study is listed in my medical chronology.","sourceIds":["experience"]},{"id":"jan-biopsy","date":"2026-01-21","category":"test","status":"completed","milestone":true,"title":"Biopsy and tumor sequencing","summary":"This biopsy produced the usable January tumor DNA and RNA dataset later used in my vaccine work.","storyAnchor":"section-testing-and-tissue","sourceIds":["experience"]},{"id":"radiation","date":"2026-02-23","endDate":"2026-03-04","category":"treatment","status":"completed","milestone":true,"title":"Focused radiation","summary":"I received a course of SBRT to a growing area in my left lung. It made sense at the time; I am less sure about that decision in hindsight.","storyAnchor":"section-what-i-d-repeat-and-what-i-m-unsure-about","sourceIds":["experience"]},{"id":"ct-apr-2026","date":"2026-04-15","category":"scan","status":"completed","milestone":false,"title":"CT of chest, abdomen and pelvis","summary":"This study became part of the later comparisons of pleural disease.","sourceIds":["experience"]},{"id":"ct-jun-2026","date":"2026-06-15","category":"scan","status":"completed","milestone":false,"title":"Chest CT","summary":"The later imaging review documented growth compared with April.","sourceIds":["experience"]},{"id":"pet-jun-2026","date":"2026-06-29","category":"scan","status":"completed","milestone":true,"title":"PET/CT before changing treatment","summary":"This scan documented pleural progression before I started lorlatinib.","storyAnchor":"section-treatment-decisions","sourceIds":["experience"]},{"id":"jul-biopsy","date":"2026-07-09","category":"test","status":"completed","milestone":true,"title":"Another biopsy, different limits","summary":"The July Caris workup had insufficient tumor for whole-exome and whole-transcriptome sequencing. Other testing was completed.","storyAnchor":"section-testing-and-tissue","sourceIds":["experience"]},{"id":"guardant-jul","date":"2026-07","category":"test","status":"completed","milestone":false,"title":"Guardant blood testing","summary":"The report and collection email disagree on the exact day. I am keeping month-level precision until that is resolved.","storyAnchor":"section-testing-and-tissue","sourceIds":["experience"]},{"id":"dana-farber-jul","date":"2026-07","category":"appointment","status":"completed","milestone":false,"title":"Dana-Farber second opinion","summary":"A specialist review in July. The records disagree on the precise visit day, so I am not assigning one.","storyAnchor":"section-second-opinions-and-useful-people","sourceIds":["experience"]},{"id":"lorlatinib","date":"2026-07-20","category":"treatment","status":"ongoing","milestone":true,"title":"Started lorlatinib","summary":"I switched after progression on alectinib. I was still taking lorlatinib at my October 21 update.","storyAnchor":"section-treatment-decisions","sourceIds":["experience"]},{"id":"ct-aug-2026","date":"2026-08-18","category":"scan","status":"completed","milestone":false,"title":"CT of chest, abdomen and pelvis","summary":"The comparison scan for the September 22 study.","sourceIds":["experience"]},{"id":"neck-ct-aug-2026","date":"2026-08-18","category":"scan","status":"completed","milestone":false,"title":"CT of the neck","summary":"This was a CT, separate from the chest, abdomen and pelvis study.","sourceIds":["experience"]},{"id":"xray-sep-2026","date":"2026-09-11","category":"scan","status":"completed","milestone":false,"title":"Chest X-ray for new pain","summary":"The X-ray was completed while the timing of the next CT was being discussed.","sourceIds":["experience"]},{"id":"stable-ct","date":"2026-09-22","category":"scan","status":"completed","milestone":true,"title":"A stable CT","summary":"The chest, abdomen and pelvis scan was stable compared with August 18.","storyAnchor":"section-treatment-decisions","sourceIds":["experience"]},{"id":"dana-farber-sep","date":"2026-09-29","category":"appointment","status":"completed","milestone":true,"title":"Dana-Farber reviews the plan","summary":"The specialist agreed the scan was stable and supported continuing lorlatinib. We also discussed vaccine timing and tissue.","storyAnchor":"section-second-opinions-and-useful-people","sourceIds":["experience"]},{"id":"serova-design","date":"2026-10-02","category":"research","status":"completed","milestone":true,"title":"Reviewed a proposed vaccine design","summary":"A design discussion with Serova. This was research and planning, not a vaccine dose.","storyAnchor":"section-research-and-additional-options","sourceIds":["experience"]},{"id":"local-oncology-oct","date":"2026-10-05","category":"appointment","status":"completed","milestone":false,"title":"Local oncology follow-up","summary":"My oncologist supported continuing lorlatinib. Vaccine participation remained conditional on the necessary approvals.","storyAnchor":"section-research-and-additional-options","sourceIds":["experience"]},{"id":"vaccine-path","date":"2026-10-21","category":"research","status":"planned","milestone":false,"title":"Working toward a personalized vaccine","summary":"I hoped to finalize, manufacture, and receive the first dose by early 2027. No dose had been received at this update.","storyAnchor":"section-research-and-additional-options","sourceIds":["experience"]},{"id":"mri-jun-2026","date":"2026-06-27","category":"scan","status":"completed","milestone":false,"title":"Brain MRI","summary":"This study date is recorded in my MyChart count review.","sourceIds":["mychart-counts"]}]},"topics":["getting-started"],"capabilities":[],"sources":[{"id":"experience","label":"Kevin Wimer: personal experience and dated care history","url":"https://kevinwimer.com/cancer/resources/my-cancer-story/","publisher":"Kevin Wimer","checkedAt":"2026-10-26","supports":"My personal account. Underlying medical records, dated correspondence, and the editorial evidence register are retained privately. The last personal status update used here is October 21, 2026.","type":"experience"},{"id":"sid","label":"Sid Sijbrandij's public cancer account","url":"https://osteosarc.com/","publisher":"Sid Sijbrandij","checkedAt":"2026-10-26","supports":"The public site Kevin identifies as an inspiration for investigating and sharing his own experience.","type":"experience"},{"id":"mychart-counts","label":"MyChart activity counts: July 1, 2024 through October 26, 2026","url":"https://kevinwimer.com/cancer/resources/my-cancer-story/#story-workload","publisher":"Kevin Wimer","checkedAt":"2026-10-26","supports":"Personal portal-count export supplied October 26, 2026. The CSV reconciles to 294 result entries. Visit and message counts follow the supplied review notes and exclusions. Includes general health care and overlapping record categories.","type":"experience"}],"applicability":"For patients and families interested in how I approach my own care. My diagnosis and treatment history are specific to me.","limitations":"One patient’s experience, not a treatment recommendation. Discuss medical decisions with your care team. This chronology is incomplete and does not establish that an action caused an outcome.","disclosure":{"type":"none","text":"I have no paid, advisory, investment, or free/discounted-service relationships with the organizations named here, beyond being a patient, donor, or volunteer. Confirmed October 26, 2026."},"reviewedAt":"2026-10-26","relatedIds":["d6751647-28f6-42b0-a0de-56b30c69790b","f7221927-6b87-4be3-9a7c-906768a192a5","af18cbc9-1c7f-4799-a763-3f53ba52b1fd","892119f9-0439-4e43-b467-66c99bc7be7c","37f8559b-848c-41bc-9591-06013c785a00","656030c7-047a-40e9-b47b-14b19f3fd2bd","bcbf518f-872e-434c-b031-3d6c266ceaa4","966ad3d5-e20a-40de-ba3d-cb072e57ebef","9f20f130-cad1-494e-bf40-bd02d30f01cd"],"assetIds":["d7fa2834-7891-458f-9b8f-c0b8cb9608db","2ac53f4a-2648-4faf-bc93-db9e2947a72a"],"artworkBrief":"An abstract personal chronology: an orange path connecting layered paper records, a phone, and calendar shapes. Ivory, charcoal and orange editorial cut-paper artwork. No medical details, charts, body parts, text, logos, or treatment promises.","relatedX":[],"facts":[],"id":"12bb93ae-bd4e-4cca-ba12-fd8f16015355","kind":"resource","slug":"my-cancer-story","revision":"91b40f06-1d3a-486e-a9e1-e16da1a2f1df","canonicalUrl":"https://kevinwimer.com/cancer/resources/my-cancer-story/","publishedAt":"2026-10-26T21:36:55.827Z","updatedAt":"2026-10-26T21:40:33.033Z","previewOnly":false,"illustrationAssetId":"d7fa2834-7891-458f-9b8f-c0b8cb9608db","shareImageAssetId":"2ac53f4a-2648-4faf-bc93-db9e2947a72a"}