# My Cancer Story 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. ![Article illustration](https://kevinwimer.com/media/d7fa2834-7891-458f-9b8f-c0b8cb9608db) Author: Kevin Wimer Canonical URL: https://kevinwimer.com/cancer/resources/my-cancer-story/ Stable ID: 12bb93ae-bd4e-4cca-ba12-fd8f16015355 Revision: 91b40f06-1d3a-486e-a9e1-e16da1a2f1df Published: 2026-10-26T21:36:55.827Z Updated: 2026-10-26T21:40:33.033Z Reviewed: 2026-10-26 ## Who this is for For patients and families interested in how I approach my own care. My diagnosis and treatment history are specific to me. I've been a founder and entrepreneur my whole life. I run at problems. Cancer didn't change that. Taking 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. This 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. ## 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. [If cancer just hit your family, start here.](/cancer/resources/a-place-to-begin/) ## 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. [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/) ## 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. [Make a second opinion useful](/cancer/resources/get-a-second-opinion/) · [Find people who know your cancer](/cancer/resources/find-support/) ## 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. [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/) ## 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](https://osteosarc.com/). This is my experience as a patient. Talk through medical decisions with your own care team. ## Where things stand As of October 21, 2026. 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. ## The work behind the timeline July 1, 2024 through October 26, 2026. MyChart activity-count export, reviewed October 26, 2026.. - 294 test-result entries: Portal result-list entries from July 1, 2024 onward. Includes lab panels, imaging, pathology and other result types. This is not 294 blood draws. - 115 visit records: 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. - 23 CT, MRI & PET studies: 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. - 379 message-folder entries: 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. 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. - Routine lab panels: 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. - Other imaging: 11 chest X-ray study records and 1 abdominal ultrasound, outside the 23 CT/MRI/PET studies above. - Biopsies and radiation: 2 CT-guided lung-biopsy procedure records. 5 radiation-treatment dates, all belonging to the one radiation course shown in the timeline. - Visit days and telephone records: 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. - What this misses: 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. Sources: mychart-counts ## Timeline 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. ### July 2024: Diagnosed with lung cancer Diagnosis; Completed; turning point. My diagnosis was stage IV lung cancer. ALK testing became central to the treatment plan. Sources: experience [Read the story](#section-diagnosis) ### July 5, 2024: Initial chest CT Scans; Completed. The CT showed a large left pleural effusion. Sources: experience ### July 6, 2024: Pleural fluid drained and sampled Tests & procedures; Completed. Fluid from around my left lung was collected for diagnostic work. Sources: experience [Read the story](#section-diagnosis) ### July 26, 2024: CT of chest, abdomen and pelvis Scans; Completed. Part of my initial imaging workup. Sources: experience ### July 29, 2024: Baseline brain MRI Scans; Completed. A separate study from the PET/CT that day. Sources: experience ### July 29, 2024: PET/CT Scans; Completed. Part of my initial imaging workup. Sources: experience ### July 31, 2024: PleurX catheter placed Tests & procedures; Completed. A drainage catheter was placed on my left side. Sources: experience ### August 2024 to July 20, 2026: Started alectinib Treatment courses; Completed; turning point. This was my first ALK-directed treatment. I stayed on it until the switch to lorlatinib in July 2026. Sources: experience [Read the story](#section-treatment-decisions) ### October 2, 2024: CT of chest, abdomen and pelvis Scans; Completed. This study is listed in my medical chronology. Sources: experience ### January 7, 2025: CT of chest, abdomen and pelvis Scans; Completed. This study is listed in my medical chronology. Sources: experience ### March 28, 2025: CT of chest, abdomen and pelvis Scans; Completed. This study is listed in my medical chronology. Sources: experience ### March 28, 2025: Brain MRI Scans; Completed. This study is listed in my medical chronology. Sources: experience ### July 8, 2025: CT of chest, abdomen and pelvis Scans; Completed. This study is listed in my medical chronology. Sources: experience ### October 7, 2025: CT of chest, abdomen and pelvis Scans; Completed. This study is listed in my medical chronology. Sources: experience ### October 7, 2025: Brain MRI Scans; Completed. This study is listed in my medical chronology. Sources: experience ### January 6, 2026: CT of chest, abdomen and pelvis Scans; Completed. This study is listed in my medical chronology. Sources: experience ### January 13, 2026: PET/CT Scans; Completed. This study is listed in my medical chronology. Sources: experience ### January 21, 2026: Biopsy and tumor sequencing Tests & procedures; Completed; turning point. This biopsy produced the usable January tumor DNA and RNA dataset later used in my vaccine work. Sources: experience [Read the story](#section-testing-and-tissue) ### January 26, 2026: Brain MRI Scans; Completed. This study is listed in my medical chronology. Sources: experience ### February 23, 2026 to March 4, 2026: Focused radiation Treatment courses; Completed; turning point. 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. Sources: experience [Read the story](#section-what-i-d-repeat-and-what-i-m-unsure-about) ### April 15, 2026: CT of chest, abdomen and pelvis Scans; Completed. This study became part of the later comparisons of pleural disease. Sources: experience ### June 15, 2026: Chest CT Scans; Completed. The later imaging review documented growth compared with April. Sources: experience ### June 27, 2026: Brain MRI Scans; Completed. This study date is recorded in my MyChart count review. Sources: mychart-counts ### June 29, 2026: PET/CT before changing treatment Scans; Completed; turning point. This scan documented pleural progression before I started lorlatinib. Sources: experience [Read the story](#section-treatment-decisions) ### July 2026: Dana-Farber second opinion Medical visits; Completed. A specialist review in July. The records disagree on the precise visit day, so I am not assigning one. Sources: experience [Read the story](#section-second-opinions-and-useful-people) ### July 2026: Guardant blood testing Tests & procedures; Completed. The report and collection email disagree on the exact day. I am keeping month-level precision until that is resolved. Sources: experience [Read the story](#section-testing-and-tissue) ### July 9, 2026: Another biopsy, different limits Tests & procedures; Completed; turning point. The July Caris workup had insufficient tumor for whole-exome and whole-transcriptome sequencing. Other testing was completed. Sources: experience [Read the story](#section-testing-and-tissue) ### July 20, 2026: Started lorlatinib Treatment courses; Ongoing at last update; turning point. I switched after progression on alectinib. I was still taking lorlatinib at my October 21 update. Sources: experience [Read the story](#section-treatment-decisions) ### August 18, 2026: CT of chest, abdomen and pelvis Scans; Completed. The comparison scan for the September 22 study. Sources: experience ### August 18, 2026: CT of the neck Scans; Completed. This was a CT, separate from the chest, abdomen and pelvis study. Sources: experience ### September 11, 2026: Chest X-ray for new pain Scans; Completed. The X-ray was completed while the timing of the next CT was being discussed. Sources: experience ### September 22, 2026: A stable CT Scans; Completed; turning point. The chest, abdomen and pelvis scan was stable compared with August 18. Sources: experience [Read the story](#section-treatment-decisions) ### September 29, 2026: Dana-Farber reviews the plan Medical visits; Completed; turning point. The specialist agreed the scan was stable and supported continuing lorlatinib. We also discussed vaccine timing and tissue. Sources: experience [Read the story](#section-second-opinions-and-useful-people) ### October 2, 2026: Reviewed a proposed vaccine design Research & options; Completed; turning point. A design discussion with Serova. This was research and planning, not a vaccine dose. Sources: experience [Read the story](#section-research-and-additional-options) ### October 5, 2026: Local oncology follow-up Medical visits; Completed. My oncologist supported continuing lorlatinib. Vaccine participation remained conditional on the necessary approvals. Sources: experience [Read the story](#section-research-and-additional-options) ### October 21, 2026: Working toward a personalized vaccine Research & options; Planned. I hoped to finalize, manufacture, and receive the first dose by early 2027. No dose had been received at this update. Sources: experience [Read the story](#section-research-and-additional-options) ## Limits and context 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. ## Relationships and disclosures 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. ## Sources - [Kevin Wimer: personal experience and dated care history](https://kevinwimer.com/cancer/resources/my-cancer-story/) — Kevin Wimer; experience; checked 2026-10-26; 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. - [Sid Sijbrandij's public cancer account](https://osteosarc.com/) — Sid Sijbrandij; experience; checked 2026-10-26; The public site Kevin identifies as an inspiration for investigating and sharing his own experience. - [MyChart activity counts: July 1, 2024 through October 26, 2026](https://kevinwimer.com/cancer/resources/my-cancer-story/#story-workload) — Kevin Wimer; experience; checked 2026-10-26; 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. Topics: getting-started Capabilities: Related record IDs: 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 Follow Kevin on X: https://x.com/kevinace Educational information, not an individualized treatment recommendation.