Still here!

 I'm still here!

PSA still undetectable on standard assay, follicular lymphoma still nice and quiet, prosthetic heart valve still working fine.

Working out 3 days a week, plus hiking and biking. 

I read Peter Attia's book, Outlive, a few months ago, and now I'm trying to reduce my visceral fat (the fat around your organs) which is especially dangerous. Waist circumference is tied to insulin resistance, cardiovascular disease, and early death. Even though my BMI is almost normal (25.5), my waist circumference is way too high. In case you're wondering, waist circumference is not the same as your pants waist size. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4104704/#:~:text=Men%20with%20a%20waist%20circumference,CI%2C%201.70%E2%80%931.89).

https://www.webmd.com/diet/calculating-your-waist-circumference

Yet another study shows importance of not dallying before salvage radiation

 Getting started early with salvage radiation improves the odds of success, yet another study shows. In this study, an important PSA cutpoint was shown to be 0.25 ng/ml:

"In a study reported in the Journal of Clinical Oncology, Derya Tilki, MD, and colleagues identified a prostate-specific antigen (PSA) level cutpoint, above which initiation of salvage radiation therapy after radical prostatectomy was associated with an increased risk of all-cause mortality in patients with prostate cancer."  Source: The ASCO Post, March 7, 2023. https://ascopost.com/news/march-2023/psa-level-at-time-of-salvage-radiation-therapy-after-radical-prostatectomy-and-risk-of-all-cause-mortality/

In my case, because my urologist wasn't watching me like a hawk, and because Christmas and New Year's hit at the time I was trying to make appointments, I started SRT much later than 0.25.  I was fortunate that it still worked, and apparently cured my cancer.

16 years after salvage radiation, my PSA...

Just had a PSA done--still less than 0.10.  I had been frantic a couple of years ago when I had two ultrasensitive tests done just over a year apart. The first one showed .02, and was the first PSA that was "detectable" since salvage radiation did its job in 2007. Then in 2021 I had another ultrasensitive test. It was 0.05, or more than double.  I went to a prostate cancer oncologist, who reassured me that it was probably nothing. He said he didn't order ultrasensitive tests for people like me (post-surgery, post-radiation). So we've gone with the regular assay.

If my PSA had really been rising at the rate it seemed to on the ultrasensitive test, I would have easily passed the 0.1 mark on the standard assay by now. The fact that it did not is quite reassuring.  I've now had multiple standard PSA tests, all "less than 0.1".  No threat.

Lymphoma, treatment for lymphoma, or more likely, my heart, is the real threat to making it as long as my parents have. Both parents are alive and well, in the 80s and 90s.  My grandmother is over 105! 

Anyway, that's it for now.  

Contempt, defiance, scorn

 Contempt and defiance.

Sometimes I think of myself (or you, if you're facing cancer) in the shoes of the armored Exeter, representing Henry V, when the messenger of the Dauphin, prince of France, asks what message Henry sends his enemy.

Exeter : "Scorn and defiance, slight regard, contempt."

I've got my quarterly blood tests coming up soon for lymphoma. I'm not expecting any surprises--feeling fine in that regard. But if there is any reason for concern, I'm in good hands and not overly anxious.

Eventually, most follicular lymphoma patients need treatment (immunotherapy plus chemotherapy), but its best not to get treated any sooner than necessary. I'm hoping it's a long time.

Very little growth

 The CT scan showed that some of my affected lymph nodes had increase in size, but very little (like 1 mm). The others were the same size as a year ago.

So, no treatment!  Blood tests every 3 months, and a CT again in August 2023.

No news on my PSA--I assume it's still less than 0.1.  I'll check again next year.

Heart palpitations (premature ventricular contractions, or PVCs) are still a nuisance. That may be my next intervention.

That's all for now--stay cool!

Follicular Lymphoma

 A year ago, I was getting ready for heart surgery. The surgeon ordered a series of CT scans to plan a rather complex minimally invasive procedure. The scan showed I had multiple enlarged lymph nodes, with no previous underlying cause. The hospital then did a full-body PET-CT scan, and it showed even more suspicious nodes--from one armpit, through my deep abdomen, and to the groin on the opposite side. This report was marked "suspicious for lymphoma." 

My heart surgery was put on pause.

I then had a biopsy of my armpit lymph node. (At first, they were going to do groin, but the armpit sounded less uncomfortable, so they switched).  The diagnosis was follicular lymphoma, stage 3, grade 1-2.

Follicular lymphoma is a cancer of the lymphocytes, part of the immune system. It's a blood cancer since lymphocytes are found in the blood and lymph fluid. It's usually an "indolent" cancer, meaning it grows very slowly. People can sometimes go for many years without treatment. There is no cure. Treatment takes a harsh toll on the body, and treating early--before symptoms arise--does not convey any survival benefit. So in many patients, including me, the best thing is "watch and wait", which probably sounds familiar to those of you who have prostate cancer. 

An oncologist reviewed my charts and gave the green light for heart surgery, which was a big success. A few months after recovering, I started regular visits to the oncologist specializing in follicular lymphoma. Every 3 months I get a physical exam and a few blood tests. Once a year I'm going to have CT scans to check on the size of the affected lymph nodes, spleen, and liver, and to see if there are any newly involved nodes.

As to my stage being 3, that's not as bad as it sounds. It just means the lymphoma is on both sides of my diaphragm (the diaphragm is used as a convenient dividing line). Most follicular lymphoma patients are diagnosed at stage 3 or 4. It doesn't mean a dire prognosis like it does in some other cancers--it's simply an indication of spread.

My first regular CT scan is this week. I love that there's very little waiting around for results at the cancer center I go to. I'll have the scan and blood tests early in the morning, and then by lunch I'll have the results in my portal. Shortly after that, I'll go over everything with the doc. Hopefully I won't need any treatment. Treatment, should I need it now, would be immunochemotherapy, a combination of immunotherapy and chemotherapy. The big drug in this, and one that really changed the landscape when it was introduced, is rituximab (Rituxan®). We are now, in fact, living in the "rituximab era" where overall survival (OS) time for follicular lymphoma is now approaching 20 years, which is way higher than it was before the drug was introduced. For most patients, FL is now thought of as a chronic disease. Although survival time is very long, when FL patients die, the leading cause of death is FL, even though most die of something else. A cure would change that, and change the lives of patients who live through cycles of relapse, treatment, and remission.

Anyway, that's the situation from here. Prostate cancer beaten, but lymphoma is destined to be my companion for life. That could change if a cure is found--please support organizations like these:

• Leukemia & Lymphoma Society: https://www.lls.org/
• Lymphoma Research Foundation: https://lymphoma.org/
• Follicular Lymphoma Foundation (a new foundation in the UK--the only foundation solely focused on follicular lymphoma): https://www.theflf.org/

 PSA is less than 0.1 today yet again, nearly 16 years since I finished salvage radiation.

Since it seemed to be creeping up on ultrasensitive tests in 2020 and 2021, I started seeing an oncologist that specializes in prostate cancer. But it really doesn't look like anything--probably a protein that's close enough to PSA to trigger a response on the ultrasensitive test. 

So we're going to go to checks every 6 months, vs. every 4, and then I imagine I'll just go back to yearly checks.