The Lump
It was a little over two years ago — back in late 2023 — that I felt a lump in my neck. I was 63 at the time, trying to stay active by riding a road bike or Peloton daily, and up until that lump showed up I figured I was doing alright. Turns out I had follicular lymphoma. I'm 65 now, it's time to put it all down.
Getting Interested in Longevity
Before any of this, I had gotten interested in longevity and metabolic health. Listened to Lifespan by David Sinclair a few years back, which led me to Peter Attia, Mary Newport, and others. Spent lots of time looking at everything with a critical mindset to separate the anecdotal evidence and pseudoscience from true objective information.
Chris Hemsworth did a series called Limitless, and the episode he did on fasting with Dr. Attia piqued my interest. So I tried a 48-hour water-only fast to see how bad it would make me feel. Wasn't as bad as I thought. Me and my wife ended up doing another two-day fast a week later, and I dropped over 15 lbs.
We avoid processed foods by cooking dishes from scratch. Used to hover around 205–210 lbs. Since then it's more like 190–195 lbs.
Diagnosis
Then I found the lump. The memory is distinct, we were at the Bellagio in Vegas. Just one trip of many. Made an appointment with the PCP, he said it's probably nothing. He ordered some tests anyway; an ultrasound of the area, and a CT scan of the neck and chest. He should have ordered the belly at the same time, and I should have suggested it knowing how those things go. The radiologist found something below the diaphragm, so had to get a belly scan too. All the doctors were suggesting things were benign, until it wasn't.
Biopsy of nodes in my belly was in December 2023, and that's when they told us it was FL. Had a PET scan in March 2024 and the node in my neck lit up along with the nodes in my belly. The right tonsil lit up too, which surprised the doctors. Routine blood tests were nothing out of the ordinary.
Looking back at an older neck scan, it's clear the tonsil wasn't right even then, but the radiologist didn't flag it. For years I had what I thought was a bad habit — a need to clear my throat. Didn't associate it with tonsils until my brother told me I'd had the "bad habit" for as long as he could remember.
Tonsillectomy and a New Diet
The tonsils came out in May 2024. More FL in there, but nothing else new. The plan was to remove the lymph node in the neck at the same time. The surgeon decided against it because when he made to go after it, my arm twitched. Recovery was rough. So painful to ingest anything that I ended up on a two-day fast and intermittent fasting whether I planned it or not. Weight drifted toward 180 lbs.
With everything I'd been reading about IGF, ketones, glucose, and CKI and how it all relates to cancer cells, I decided my diet going forward would resemble a ketogenic SOS-free diet as much as possible.
Lifestyle Changes
We changed our lifestyle a bit. Doing our best to stay away from the SAD — leaning on East Asian and Mediterranean dishes, heavy on the vegetables and light on the meats. Some of it is because of the condition, some just because of everything we've been reading about health research. Most of what we were told 50–70 years ago about diet turned out to be misguided or flat-out wrong. Vegetables really are good for you — and essential if you want improved healthy living.
We bought a large umbrella for the back so I can join Kim when she's floating in the pool. Put a hot tub out back so we can spend time outside together rather than inside on the couch in front of the TV. Thought about a heat pump water heater for the pool to extend the time we can spend out back together, but they are much too big.
After the diagnosis I cut down at work to 8 hours a week. Old enough for Social Security, so that's coming in. All in an effort to spend more time with Kim, and take as many trips as we can afford.
Watch and Wait
PET scan July 1, 2024. The radiologist report said the right tonsillar uptake had resolved post-resection, and there was no interval change in the cervical and mesenteric nodes — still suspicious for recurrent/residual disease. Talked to the oncologist. No surprises. The plan was "watch and wait" — nothing to do unless I had symptoms. Opted for labs in January rather than another scan. If things get worse, blood tests will flag it.
A follow-up with Dr. Halder categorized things as Stage III Follicular Lymphoma (grade 3a), but with no B-symptoms (fever, night sweats, ≥10% weight loss) and no treatment triggers like severe symptoms or organ issues — so the plan remained watch-and-wait, with another PET/CT scheduled after upcoming travel and labs (CBC, CMP, LDH, uric acid) every 3–6 months to monitor.
Progression
Things did get worse. By March 2025 the neck nodule was up to an SUV max of 9.2 and 2.5 x 1.7 cm. New moderately avid abdominal nodes had shown up. By September 2025 the neck was at SUV 10.8, and a reference node near the duodenal-jejunal junction had jumped from 5.5 to 11.4. Concerning for progression of disease. Still, not enough to require treatment.
Me and Kim discussed asking for treatment anyway so we could schedule things around our plans. Mostly my idea. We cruise at least twice a year and spend lots of time in Vegas. Kim wanted a heads up on how treatment would impact what we'd already booked.
The Treatment Plan
New oncologist at the VA, a Fellow, like a lot of them there. He wanted a biopsy of the active lymph node in my belly as a precaution to make sure we were still dealing with the same FL and nothing had changed. The pathology came back clean — nothing had changed, still just follicular lymphoma. After that, four rounds of BR — a standard combo of chemo and immunotherapy, 4 weeks apart. He was ok working around our trips. Biopsy done before we left for our repositioning cruise at the end of October 2025, treatments to start when we got back.
Way I figured it, I can feel bad on the couch at home, or I can feel bad on the balcony of a cruise ship. So we'd be doing as much as possible.
The Transatlantic
The cruise was a transatlantic, lots of sea days. Exercised daily, big salad for lunch every day. Tried to put on some weight in anticipation of being debilitated but didn't gain much. It's a cruise ship, so of course I caught a bug. No fever, coughing or sneezing, so I pushed through. Day of debarkation I started a 48-hour water-only fast, four days before treatment.
First Round of BR
First round of BR surprised me. The drugs are Bendamustine (90 mg) and Rituximab (375 mg) — both on day one, then just the Bendamustine on day two. Before the infusion they had me take Benadryl, Tylenol, Zofran, and a steroid, which almost certainly blunted the side effects.
I'd read the range: some people feel down for a few days, others are bedridden for a week. We were prepared for at least a couple of days on the couch — it didn't happen. During the first infusion I started feeling a sore throat coming on, but it went away. Most common side effect is nausea — had none of it initially. Kept up my exercise routine, still avoiding processed food.
Then came the delay. By Wednesday nausea was setting in — not debilitating, more like a non-localized bad feeling in the abdomen, an ambition-draining kind of thing. Still got the exercise in every day. No nausea medication that first round. Over the following weeks it came and went, but nothing too terrible.
There was one obvious win, though: that lymph node in my neck — the one that started all this and had grown noticeably large during watch-and-wait — was visibly gone within three weeks of the first cycle.
Round Two — and a Trip to Sedona
Second round, I took the Zofran this time, and the nausea was noticeably less. Immediately after the second infusion we left for Sedona. We figured if we didn't start enjoying ourselves now, I'd regret it later if this stuff comes back quickly. Eating was more force of habit than real hunger, but the exercise kept going.
The general abdominal ache set in on its usual delay, about a day after the infusions. Manageable, just something to tolerate. The oncologist had mentioned wanting two years of maintenance after treatment was done. I told him I wanted to have that discussion after the post-treatment PET scan.
Doing My Homework — With AI
In the meantime I wanted real information on maintenance therapy — not general health stuff, but the actual clinical guidelines oncologists use. I've been testing the various AI platforms, even paying for a few because it's so interesting.
Started with a research article in Chrome. Used Claude to summarize it, then asked it to generate a comprehensive research prompt specifically about maintenance. Fed that same prompt into Claude, Gemini, Perplexity, and ChatGPT, using each platform's version of deep research. Responses varied, but each brought different strengths:
- Perplexity — real-time source verification.
- Claude — clinical decision framework.
- ChatGPT — detailed trial data tables.
- Gemini — surprised me by flagging that the maintenance paradigm might be shifting because of the bispecific antibody trials and recent FDA approvals.
No single AI gave the complete picture, but together they surfaced both current standards AND the emerging questions. Came out of it with a reference document covering NCCN, ESMO, and German S3 guidelines, GALLIUM and PRIMA trials, dosing protocols, and evidence levels — all with traceable citations. I need to be well informed when we talk to the oncologist. They're busy, especially at the VA, and pushed to get through as many patients as they can.
Where Things Stand
When I went in for the fourth treatment I told the nurse it was my last. She looked confused. She had to check, said the Dr had ordered 6 treatments. That was confusing, when we talked to him before everything started, it was four with discussions about maintenance. He stopped by to talk about. It took a while to get over the fact that I would have to endure two more.
Treatment five was the worst yet. When it was time for the sixth however, the blood test showed depleted neutraphils. The oncologist postponed the treatment. After getting over the disappointment that the effects of the treatments would be prolonged, me and Kim talked about the scan that was scheduled. It was possible it would show some response, enough to forego any more treatments.
By the time the post-treatment PET/CT came around on April 13, 2026, things had changed dramatically. The scan was compared to the prior one from September 2025 — and the report was about as good as it gets.
From the Radiology & Pharmacy Notes
Pharmacy note — Brian C. Do, PharmD (April 15, 2026)
"Imaging with notable response. Per Lugano scoring, he has a complete metabolic response. Veteran has f/u with MD 4/16/26. Can discuss if there is need to proceed with last cycle of therapy. Due to CR, can forgo maintenance rituximab."
Radiology impression — Jason M. Samii, MD (PET/CT 4/13/2026 vs. 9/8/2025)
"Positive interval treatment response above and below the diaphragm. Previously described enlarged FDG avid left cervical level 5 lymph node, right upper cervical chain, and fossa of Rosenmüller lesions have resolved. Previously intensely FDG avid mesenteric lymph nodes now demonstrate mild FDG uptake. Lugano score of 2. Continued interval follow-up is recommended."
The Conversation With the Oncologist
We met with the oncologist last week after the scan. He's calling it complete remission. No more treatment is warranted. No maintenance rituximab either. After months of planning around infusions, side effects, and the ongoing question of whether two years of maintenance would be necessary, the answer turned out to be: none of it.
Continued interval follow-up is the plan going forward — scans and labs to keep an eye on things — but for now, we're done.
Anyway, we have a cruise planned for next week.
What I've Learned Along the Way
Because of the lymphoma bit I've learned a lot about things that have changed within just the last few years. Most of it surrounds the gut microbiome:
- Our appendix isn't really useless — when illness wipes out your gut, the appendix is where the bacteria hold up until everything is better.
- There is no clean "soluble/insoluble fiber" distinction; the microbes need and use it all.
- Routine antibiotics hurt more than they help.
- Only about 25% of your cholesterol comes from food — the rest your body makes. A healthy microbiome helps regulate and excrete excess cholesterol, which means the focus should be on gut health, not just avoiding eggs.
Steak and eggs is fine. Fish is better. Salad is better for you more than you know. And of course, getting off the couch only makes everything much better still.
For now, though, the scan is clean, the treatment is done, and Kim and I have plenty of trips left to plan. I'll put up another update if and when there's something worth reporting.
Disclaimer: This post was reconstructed from a series of Facebook posts. The narrative was recreated with the help of an AI assistant (Claude) based on the original posts, and then formatted here. The underlying story, experiences, and medical details belong to the original author.
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