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.  

For now, my follicular lymphoma is staying quiet. Lactate dehydrogenase (LDH), is in the normal range, and red blood cells and hemoglobin are okay as well. They are edging towards being out of range, but with just two data points, it's not possible to establish a trend. I'll see the hematologist again in August for repeat tests and some CT scans. 

No new PSA results at this time.

The bioprosthetic mitral valve I had implanted in September seems to be doing just fine. I had an echocardiogram yesterday, so I'll know more for sure in a matter of days.

Getting revved up for the new Top Gun movie!

How about Reginald?

Doctors suggest new names for low-grade prostate cancer

Today's PSA: less than 0.1

 

For the umpteenth time in 16 years, my PSA is undetectable on the standard PSA. Cheers!

PSA Doubling Time Calculator

 Knowing your PSA doubling time is important, in terms of treatment and survival.

Latest Salvage Radiation News

 Some recent discoveries in salvage radiation

Early salvage RT after prostatectomy improves outcomes: https://www.cancertherapyadvisor.com/home/news/conference-coverage/american-society-of-clinical-oncology-genitourinary-asco-gu/asco-gu-2022/early-salvage-radiation-after-surgery-improves-mfs-in-recurrent-prostate-cancer/  (Research continues to confirm that earlier is better if you need SRT.)

When to Add ADT to Early or Late Salvage Radiation: https://www.urotoday.com/video-lectures/prostate-cancer-genomic-classifier/video/2269-when-to-add-adt-to-early-or-late-salvage-radiation-dan-spratt.html (I didn't have ADT, otherwise known as hormone therapy, but in higher-risk cases it makes sense)

Salvage Radiotherapy versus Observation for Biochemical Recurrence: https://pubmed.ncbi.nlm.nih.gov/35159007/. (Salvage radiation was associated with better long-term survival, both in terms of being free of metastatic disease and overall survival.)

Can you get cancer insurance after you've had cancer?

In the case of prostate cancer and Mutual of Omaha, the answer is yes. Yes, you can get cancer insurance if enough time has passed. I signed up a few years ago. There was some time stipulation, a number of years without a cancer diagnosis or treatment, something like that. For me that was no problem--my prostate cancer diagnosis and treatment was far in the past.

So I signed up. It was cheap--for my whole family, $20 a month. With that, I got a rider that for a diagnosis of cancer, there is a one-time lump sum payout of $2,000. 

If you get a screening PSA once a year, you get a check for $60. So I get that, and my spouse gets $60 for her mammogram each year. Think about that for a minute. The insurance costs $240 a year, and you get $120 back (if you're a couple) for screening, so the real cost is $10 a month.

If you later get diagnosed with cancer, the benefits are generous. Besides the lump sum payment (assuming you take that rider), you get paid about $50 for labs and X-rays each time. You get $50 for each follow-up visit with your doctor, up to 3x a year. You get money for being hospitalized for treatment, for chemo and immunotherapy treatments, for surgery (including biopsies). There are benefits for radiation therapy, hospice care, blood products, skilled nursing, rehab, and ambulance transportation.  For the most part, claims are simple, and taken care of with a single phone call.

I got diagnosed with lymphoma a few years after signing up for the plan, and the payments have been extremely helpful in keeping up with copays and other incidentals. The cancer plan pays on top of other insurance you might have, and it is not taxable. It's paid directly to you, not the medical provider.

I tell all my acquaintances about this. I think it's a good deal. The odds are pretty significant that you will be diagnosed with cancer sometime in your life, and just because you've had one cancer, it doesn't mean you won't have others.

 Yesterday's PSA: less than 0.10.  Hurrah!

My oncologist does not like ultrasensitive PSA tests for men in my position (many years after apparently successful treatment). 

I'll take it. Even if my PSA is creeping up on the ultrasensitive test, the doubling time would appear to be pretty long--like a year or more--and so I'm not going to have any problem with prostate cancer for a long time, if ever.

Had a bunch of tests related to lymphoma as well, and they're all fine. That cancer is staying nice and sleepy, and not causing me any problems (i.e. it's not impacting my red or white blood cell counts, or my spleen, or causing any symptoms).

I'm now going back to trying to get my percent body fat down to a healthier level. I'm at 20% right now, and would prefer to get back to 18% or lower. I'd also like to lose a couple of inches on the waist. I used Noom before, but I didn't really like it, so I'm going to try MyFitnessPal, an app that counts calories, activity, nutrients, etc. Gotta get back into the hiking, biking, spin classes, and strength training.

Watching Reacher on Prime Video--it's really compelling!  I've read some of the novels. Well done on this one, Amazon. I think you missed the target on Wheel of Time, though. 

Heart Valve Replacement and Blood Cancer

 

I forgot to post about my mitral valve. Here's a mitral valve:

Mine wore out, basically. I had mitral valve prolapse for several years, and in the past 18 months, it got worse. In September I had it replaced at Mayo Clinic in a minimally-invasive procedure. While it's better to repair than replace, mine was just flopping all over the place (Barlow's disease) so now I have one that is part cow, part artificial--a bioprosthetic. It works great. I was out of the hospital on the 5th day and back to work a month after that. 

During the workup for surgery, the doctors found out I have stage 3 follicular lymphoma, an incurable but treatable blood cancer. Right now we're just watching it, because multiple studies have shown no benefit to treating before the cancer causes problems. In prostate cancer this is called "watchful waiting" or "active surveillance."  In lymphoma they call it "watch and wait." Some patients never need treatment, but most do within a few years. Treatment is a combination of immunotherapy and chemotherapy.

 

Oh hey, me again.

Just had a biopsy of my thyroid, waiting for the results. Maybe I have a cancer trifecta--prostate, follicular lymphoma, and thyroid. We'll see. The odds are strongly in my favor for a benign result. It's just that my a nodule on my thyroid lit up on a PET scan last year. Thyroid nodules that are FDG-avid (the technical term for taking in a lot of tracer in the PET scan) are much more likely than average to be cancer. However, my ultrasound was only "mildly suspicious" for malignancy, which improves the outlook. If it is cancer, it is most likely thyroid cancer, not lymphoma or prostate cancer.

I'm going to have a standard, non-ultrasensitive PSA next week to see where I stand there. On a couple of ultrasensitive tests over the past 2 years, it looked like my PSA might be rising, 15 years after successful treatment. So that will be interesting. I'll also have some blood tests related to follicular lymphoma, just to make sure that's staying indolent (quiet). Follicular lymphoma is not curable, but most patients live many years, even decades, with it, in the same way that people live with any chronic disease.

Anyway, more to report in the coming days and weeks.

UPDATE: the afternoon of this posting I got my thyroid biopsy results back--negative for malignancy. BTW, the biopsy wasn't bad at all, done under a local anesthetic.