Day 1 of Ibrutinib

 I took my first pill of ibrutinib today at 7am.  The pill "wallet" (individual pills in individual "blisters" on a 4-week folding card) had extra stickers warning that I should also be aware of potential dizziness and not being able to operate a car or heavy machinery.  

No dizziness so far and I had a good 9.6mile bike ride on an easy, safe, low-traffic path.  That's a good start.

Good Treatment News

Yesterday afternoon I got some good treatment news -- I am expected to be able to suppress my cancer to near zero via a well-tolerated daily pill. 

I am very happy as this should mean no disability and as good a chance at a near normal daily life, and as few doctor visits as any of us "experienced staff" can expect.

Alongside the official confirmation that the same cell line of Mantle Cell Lymphoma had re-emerged, I was introduced to BTK inhibitors, which are neither chemo nor immuno therapy, but rather block an enzyme.

I will know if that daily pill (which starts next week) is working because the lump on my neck should "melt away" by Christmas.  

There are potential side effects (atrial fibrillation and blood or infection problems) but there already exist alternative pills to pivot to when the first pill stops working (which it will in 6 to 36 months) or if I can't tolerate the side effects (20% of patients)

When the pill stops working we expect to see my neck lump return, like one of those Butterball turkey timers, and then we'll switch pills, having caught it early. 

I hope to either be gently buying time for many years, or that the price of the CAR-T "cure" will come down. (For now insurers prefer $8k of pills per month to $500k for CAR-T in a single go). Or that some other cure arises, which is the miracle of our age of progress.

Compared to debilitating chemo I had imagined this seems a great option.

PET Scan (Picture) sets up Core Biopsy (Needle)

 The pet scan showed two bright lumps in my neck.  We'd already seen the one on the front.  The second is deeper--you can't see it but I have placed my fingers on it.  It hurts only when I press on it.  It is located about halfway between my ear and my spine (going around my neck) and positioned about halfway between ear-level and collar-level vertically.

It has been caught very early, whatever it is.  There's a small chance it is a lymph infection or malfunction (it *feels* like a 10% to 20% chance), with most of the rest being different kinds of cancers.  And if it is cancer, it is not the crazy-fast-moving kind. (I'd say it has been growing at about the paced it did in April 2017, and I've already reached the diagnostic level that it took until June 2017.  So we're moving faster and the lump is progressing the same.

Just as I was happy to skip sonogram and CT scan and go right to PET, I'm happy that we'll skip the Fine Needle Aspiration (or FNA--a skinny needle) and go right to a Core needle biopsy (a big diameter--call it a matchstick size sample)

Last time we "tried to get away with" only doing the FNA and, when that supplied too little tissue to give a cancer diagnosis, we jumped up to a surgical biopsy (under general anesthesia).

I hope this time we get it all done with one procedure and in half the time.  The Core biopsy (scheduled for this coming Thursday) should get enough material that they can both look at the cell types and maybe do some genetic testing (to see how close or far, mutation-wise) it is to being the "same" or a "new" cancer.

The core biopsy is done with just local numbing, and there's no prep diet and I can drive myself home afterwords (was tempted to bike, but I think I'll have some hole-closure stitches to worry about)

Pictures before Needles before Knives

The German railways are famous for a mantra that describes how they solve problems:

Organisation vor Elektronik vor Beton

Organization before Electronics before Concrete

The idea is to try to address the problem with simplest and cheapest expensive solution.  Imagine a congested rail junction. Can we reorganize the timetable?  If so, great, we're done.  Still congested?  Can we redo the signals to get things flowing? If so, great, if not (and only then) try adding a new track.

Climbing the Diagnostic Ladder works the same way.

Pictures before Needles before Knives

Or, really, fingers, pictures, needles, knives.  I found my lump with my fingers.  I sent pictures (and dimensions) to my Oncologist and hoped we could go right to a needle biopsy (there's something so re-assuring about the thought of stabbing it).

But protocol (and insurers) demand Pictures before Needles before Knives.

In 2017 I believe we did 3 rounds of pictures:

1. Sonogram
2. CT Scan (x-ray)
3. Fancy Scan (either a PET or an MRI)

When you don't know what you're dealing with, they're hoping that the problem is solved at an early level. The sonogram hoped it was an abscess (or aneurysm).  The CT scan hoped for something similar.  By the time you get to the PET, you're asking "is it a hard lump that likes sugar a little too much?"  Only after this do they do a needle biopsy (sucking a little bit out).  Only after that was inconclusive did they authorize a surgical biopsy.

Pictures before Needles before Knives

My doctor's first offer was a CT (partly because that's what insurers usually want first because it costs about 1/4 as much as a PET scan).  I asked for a PET or a needle biopsy:  "C'mon, all a CT is going to say is 'you have a dense mass on your neck,' which is something that we all already know from my iPhone, or can tell from our fingers."

Doc says they'd never approve a needle biopsy--its "pictures first," but at least Blue Cross Blue Shield approved skipping right to the PET, which is scheduled for next Tuesday, with the official "what'd we find" appointment (these "diagnostic reveal" appointments are always in person, in case there's bad news, which we're expecting ...we expect it to say "your lump liked the sugar"

Knock, Knock

A variant on my 2017 invention:

Knock, Knock
Who's there?
Cancer
Cancer, Who?
Can't surprise me, I've seen this lump

On the center-left in this photo is the dimple and scar from the 2017 biopsy.
On the center-right is a lump which I noticed two days ago, 2022.

So this isn't a diagnosis, but the standard questions at every vigilance visit have always begun with "any lumps or bumps?"  The answer just 10 days ago was "no," though, upon finding this one while fidgeting on a video call, I had a sense that I'd felt this before, just below the threshold of consciousness.

,

If this were a Winnie the Pooh book, it would have a chapter heading like: In which Pooh finds a lump and sends a note to his friend, Piglet

Not worried about Liver, On to Vaccinations

My Liver biopsy was "unremarkable" nothing suggested a cause for my trouble. I stopped worrying and will let "tincture of time" address it (it is quite likely that it was just one of the post-transplant meds were irritating my liver). I stopped the antibiotic in November, which was also my last appointment, and at which we said I'd start "childhood" vaccinations in February 2021. We did a seasonal flu shot too, since it was (1) worth a try before the worst of the flu season (2) cheap and low risk and (3) if it didn't work it was still worth a try (and a try again next year) Feb 4th is my next appointment, and we'll probably do one or two of the kind of vaccinations that a 1 year old would have (but on a slower 3-month interval over the next 18 months of maybe 2 shots per visit, and 3 months between boosters). MEANWHILE: I got a slot for the Covid vaccine. I'm on that list of immune-compromised "at risk" people who, if it works as a vaccine, that'd be a much better way of encountering COVID rather than as a "first impression" contagion. I will go this Thursday to Temple Israel (the synagogue down the street from Beth Israel)

Officially Done with Cancer Therapy; Now on to the Liver

I'm a little embarrassed to say that finishing post-transplant immunotherapy happened in July and I failed to blog about it. It was July 23rd. It was all so gentle: a final blood panel and the injection of the honey-like Rituxan Hycela (rituximab/hyaluronidase) into my belly fat. Proud to say: daily cycling (and now swimming) has given me less belly fat (still plenty adequate for injecting Rituxan Hycela) Anyway, when you're done with therapy, they have you ring a little ships bell as you leave. It happend kind of suddenly. I probably should have taken a selfie. But I rang it and was happy and was then fixed at getting downstairs, on my bike, and biking home. My fitbit reports that it was 43 minutes to get there, and 51 minutes to get home (probably because it was *hot* and I didn't have the opportunity to stuff ice cubes into my clothes like I did for the home-to-hospital stretch). It is about an 8-mile bike ride. So what's this about the Liver? Well, back in Sept 2017, when I first started the harsher Ara-C chemo (which requires hospitalization, where previous Bendamustine was outpatient), my liver freaked out, adn they had to reduce, slow, and spread out my treatment (took Fri-Mon instead of the intended Fri-Sun) The ruling was: MCL was going to kill me in the short term, so let's fix that while minimizing the unavoidable liver reaction, and worry about my liver later. So now it is later. For my liver, I'm in the care of the Tufts-affiliated system (my insurance, and local to me) rather than the Harvard. It's a real joy to live in a City where Tufts and Harvard can vie for my business. A couple of weeks ago they drew a "personal record" 11 vials of blood (1 just to throw away, and 10 to do about 40 different liver tests). Result: Liver enzymes still high. Mitochondrial Antibodies high, suggesting that my inflammation may have an auto-immune source. But the diagnosis, so far, is Primary Biliary Colangitis. Which is "doctor" for "his bile ducts look itchy" (Primary = no other evident cause", Biliary = Liver Bile, Colangities = Bile Duct Inflamed). Clear enough? In fact, it is a recently-coined name for a condition in which the patient has no other symptoms but has liver tests suggesting inflammation. (if it had symptoms, they might call it Cirrosis) That autoimmune source could still be related to Rituxan, which is immunotherapy. Or it could be my white-cells-and-lymph systems are still wonky. Or it could be a coincidence and the real cause may be the Bactrim (antibiotic) or Acyclovir. Or I could just be That Guy With High Liver Enzymes. The ultrasound-guided biopsy on Thursday will take a first look at the tissue itself. I expect it to serve as a baseline, and probably the first conclusion will be: 1) Let's wait until October, when the Rituxan will be "long over" 2) Let's wait until January (ish) when I'll likely be off the anit-viral and anti-biotics I expect we'll be testing liver enzymes periodically along the way. Cheers and good health to all!

Experimenting with Google Trends for "busiest day"

Experimenting with Google Trends for "busiest day" https://trends.google.com/trends/explore?date=today%205-y&geo=US&q=jobs,movies,calculator,games