Recurrence Part 2: Bob Does Radiation

On September 15, 2022, Bob resumed Folfirinox chemo treatments to knock out the recurrence identified by Signatera ctDNA (click here to learn more about Bob's recurrence and ctDNA). After three chemo treatments, Bob’s ctDNA had increased. Doctors had not been able to identify the location of the resurgence. Which did not appear on standard testing.

A PET scan was ordered.

PET is the acronym for Positron Emission Tomography. It uses radioactive material to identify metabolic processes as they occur within the body. Physiological activities like blood flow, movement within the heart, and kidney and liver function light up like a Christmas tree in a PET scan. Unusual, out of place function brightens within a PET too. Like cancer, even when small – or lurking in areas standard tests (like CT and MRI) can’t access.

Unfortunately, Bob’s insurance does not recognize a positive Signatera result as an accepted reason for PET testing. Blue Cross/Blue Shield said NO to the doctor’s request.

The denial was appealed. Another PET was scheduled.

Again, insurance said no.

PETs were appealed twice more, each denied. “We’ll continue chemo while applying to trials,” said Bob’s doctor.

Instead, Bob funded his own PET scan (with substantial discounts for self-pay). 

On Wednesday, November 23, the PET scan found cancer lurking in ONE lymph node hiding in (forever know as) the “surgical bed” behind what remains of Bob’s pancreas. As the beast is surrounded by blood vessels, the node is not a candidate for biopsy or surgical removal.

It’s bad for cancer to grow in the lymph nodes. Left alone, the evil could spread via the lymphatic system, metastasizing in organs throughout the body.

Bob began targeted radiation therapy on December 19. Treatment focuses on the inhabited lymph node while also radiating the surgical bed as a preventative measure. Bob will endure 28 treatments, every day, Monday-Friday, with time off for Christmas.

As part of radiation treatment, Bob consumes six fat chemo pills each treatment day. He uses a spoon to take them. To avoid getting chemical burns on his hands.

Due to the location of the offending node, radiation is not expected to burn Bob’s skin. He may have other side effects, however. So far this includes extreme exhaustion. Stomach cramps. Nausea.

Following radiation therapy, Bob will have another PET scan. And a CT. There will be more Signatera testing. After a period of time, he may or may not resume chemo.

Today, as we battle forward through another Christmas, we’re extra grateful. For our children and grandchildren. Supportive, loving, extended family. For the clinical trials that produced Signatera testing. For PET scans. And hope.

Merry Christmas!

Recurrence

Out for a pre-chemo walk

Bob’s cancer is back. That is the bad news.

But first, here’s some good news.

As of July 25, 2022, Bob’s (abbreviated) pancreas returned to work. Bob is off insulin!

He now manages his Cancer-induced diabetes through diet (watching the number of carbs he eats) and exercise.

Of course, the pancreas’s job is to evaluate sugar (carbohydrate) consumed and release the appropriate amount of insulin to regulate the nutritional influx. With the organ’s help, sugar is properly utilized by hungry cells. Excess sugar (if there is excess) is stored as fat.

When the pancreas doesn’t function as designed, due to genetics - or an affront to one’s body such as occurs in Whipple surgery – it requires help. In Bob’s case, this translated to daily injections of “long acting” insulin and regular evaluation for meal time adjustment (ie, more insulin at mealtime). Pens, needles, swabs, drugs, “picks, pricks, sticks” and getting-over-an-aversion-to-the-sight-of-blood.

We’re hopeful this glandular reboot marks the return to a harmonious relationship between Bob and his pancreas. For now, Bob continues to (prick his finger each morning to) assure his Blood Sugar stays in normal range. He exercises and watches the number of carbohydrates he consumes.

More good news: Bob’s body has gotten better at absorbing fats. His stomach works. His (modified) intestines function. He is slowly adding (good) fats back into his diet and enjoys an occasional Guinness with his Texas Roadhouse steak and potato.

Bob’s back to work full time. He manages his food solo on multiple-day, out of town business trips. Dons a toolbelt to chip away at as-yet incomplete pre-pandemic home modifications. Walks 12-15,000 steps each day. He maintains a healthy weight.

Bob is strong. He feels great and looks amazing!

All of which will help in the upcoming battle.

Both healthy and uninvited cells are constantly regenerating to make room for new growth. Microscopic bits are sloughed off into a person’s bloodstream. Non-cancerous, everyday scraps are known as cell free DNA (cfDNA).

Cancerous mites, specific to a tumor previously catalogued, are called circulating tumor DNA (ctDNA).

Signatera is a specialized blood test that identifies the presence of tumor-specific DNA as much as 6 months before “regular” testing (CT, CEA, CA19-9, MRI, PET, CBC, CMP, ABCDEFG) detects a challenge.

As chemo kills both good cells and bad cells (which is why a person’s hair and skin are affected during treatment) Bob’s ctDNA testing was “inconclusive” during his first chemo run.

His blood was too full of cell free “ie, everyday” sloughed off bits to evaluate recurrence.

Following chemo, Bob had two negative ctDNA tests. Yippee!

His third ctDNA, along with its let’s-do-another-to-be-sure follow-up, was positive.

Somewhere, deep in the crevices of Bob’s renovated biological system, his dispossessed tumor seeks to rebuild.

We intend to evict. Chemo is the battleground. Folfirinox is the weapon. Six months is the time frame.

Bob has arranged to work full time from home while receiving chemotherapy.

Prayers coveted.

I love this man

Whippleversary: ONE YEAR!

Recovery Space (Compilation)

One year ago, April 20, 2021, Bob’s innards were renovated by the inimitable, skilled, enthusiastic, energetic and gifted Doctor Lee S. Cummings (and team).

The diagnosis was Pancreatic Cancer. The procedure was the Whipple.

The surgery saved Bob’s life.

We didn’t fully comprehend during this complicated, stressful period just how fortunate Bob was to qualify for the life-changing, body-altering modification to his digestive and excretory processes. And the accompanying opportunity for the rigorous, Herculean task that is recovery (difficulty of which is eclipsed only by, we’re told, open heart surgery).

Only 20% of all pancreatic cancer patients qualify to undergo the Whipple, which stands as an only-option treatment (along with chemo) for Pancreatic Cancer which has not metastasized outside the pancreas. All while offering no guarantees that a patient will come out of the experience cancer-free.

A yet smaller percentage of Whippled individuals, we are reminded, survive more than 5 years.

Following surgery, Bob completed 12 cycles of the Gold Standard (ie, super hard) Chemo Treatment known as Folfirinox. On April 13, 2022 he received a diagnosis of “NED” (No Evidence of Disease) from his oncologist after his first set of post-chemo CT and labs.

Officially cancer free! Whoop and holla! Go Bob!

In 3 months, he’ll have another set of CT/labs, with aims to receive the same report.

Three months after that, he’ll do the whole CT/labs thing again. And once more, three months after that – and every three months thereafter. For two years. Then every 6 months for 3 years, taking him to the coveted 5-year mark.

Survivors who achieve their 5-year pin (so to speak) are rewarded with annual scans. Every year for the rest of their lives. Yippee!

Meanwhile, Bob returned to full-time, in-office work on April 4, 2022.

Go Bob!

Bob continues to carefully monitor his fats, sugars and proteins to keep his redesigned engine running smoothly. In return, his pancreas has kicked in, requiring only a little help from once-daily insulin injections. This annotated sugar monitoring organ (30% of his pancreas having been removed, along with the tumor) rarely needs additional mealtime, or other, correction.

Since he’s also now minus a duodenum - an important iron and fat-processing bit of intestine - Bob makes sure to eat protein rich foods, limit fats and avoid sugar and alcohol. He takes a stool softener, blood thinner, cholesterol meds and high dose iron supplements. As his body doesn't absorb iron efficiently, he may one day need infusions to keep anemia at bay.

He exercises, drinks lots of water and gets plenty of sleep too. There are good days and hard days, persistent thrush, rashes, exhaustion and belly aches. But there is also LIFE.

He got this.

One year down. A celebratory trip with the fam to Florida coming up. A lifetime follows - to dream, scheme, travel, put the finishing touches on our home addition, love one another.

We are grateful.

Peace Out Chemo