Pseudo Progression

Marty leaps for bridge over Sandy River Waters hoping to reach a safe shore  (ca 2014)

Pseudo Progression

Treatment of Melanoma Brain Metastases with immunotherapy has produced a new Magnetic Resonance Image (MRI) construct named “Pseudo Progression”. The hallmarks of pseudo progression are sudden, dramatic growth in size and number of brain tumors following one or more infusions of an immunotherapy such as Keytruda (aka pembro), Opdivo, and/or Yervoy.

My experience with pseudo progression started with an MRI of June 20, 2017 after my third infusion of pembro. In the preceding week, I had developed neurological symptoms including five local seizures, (tongue, mouth, left eye, and the left side of my face) and a loss of motor control over my left leg. Suddenly, I needed hiking poles to safely walk around the house or on city streets.

My oncologist agreed to my request of a new MRI, because these symptoms were very concerning and the next routine MRI wasn’t due until July 18th. The new MRI was more startling than the neurological symptoms, because it was dotted with numerous new tumors, some already more than a centimeter in diameter in addition to my resected tumor pocket, which doubled in size. At first glance, this MRI looked like dramatic disease progression.

Oncologists believe that pseudo progression appears in the MRI because Immunotherapy creates inflammation in the area surrounding tumors of all sizes. This inflammation is caused when Killer T-Cells attack and destroy melanoma tumor cells. On the MRI screen, inflammation lights up; microscopic tumors look like small white dots; visible tumors appear as larger white lights, larger than they actually are. It’s like shining a flashlight at the dark woods and suddenly seeing many dangerous wild creatures looking back at you.

Pseudo progression is difficult to distinguish from actual rapid cancer progression because MRIs are low resolution images that don’t distinguish and differentiate individual cells.

Pseudo progression is both a blessing and a curse. On the plus side pseudo progression suggests that my immune system, empowered by infusions, is mounting an attack on active melanoma metastases. But in the brain, resulting inflammation can cause dangerous immune-related-adverse-events (IRAEs), including malfunctioning nerves that can disable a patient. Oncologists must balance treating the cancer with avoiding and providing relief from the IRAEs. Fortunately steroids, are effective at reducing inflammation and side-effects, at a cost of slowing down the treatment effects, so it’s best to minimize the use of steroids.

My care team agreed to delay pembro infusion #4 by several days, while doubling my daily dosing with anti seizure compound (levetiracetam) together with adding a low dose of steroid (dexamethasone), a strategy to reduce seizures and reduce inflammation in hopes of relieving my left leg impairment. With these precautions in place the new plan is to administer pembro infusion #4  on Monday June 23.

After discussing this matter of pseudo progression, and in parting, my radiation oncologist said, “There is an International Gamma Knife Society Meeting in March of 2018. If you prove to be a positive case for my studies of pseudo progression, I will use your MRI for my talk. You will make me famous.”

I replied, “Count on me, I’ll do my best to help make you famous!”

Crush It

Marty, Granger, Lynne and Connie savoring a moment with Sushi, prepared by Granger

Niece Jessica says, “when you decide to become a doctor, you should not plan the whole journey, nor think about it too much, because you might give up before you begin. You should just start, take it a step at a time, and enjoy the challenge.  It’s amazing how fast time passes when you’re engaged in a worthwhile pursuit.

A slightly different step by step prescription applies to people with cancer. Many people, perhaps the majority of people with cancer are destined to die from their cancer. But worrying about, or even thinking about it that much has a way of undermining the very life we cherish.

My friend Granger from Mindfulness Based Stress Reduction left us with, “Crush It – Live every day like it’s your BEST day!”

That thought helped me today after three infusions of Keytruda. I’ve been developing neurological symptoms: seizures, numbing, and difficulty with my walking gait. I was shown yesterday’s Brain MRI, which lights up like a Christmas tree — so many active nodes! But my oncological team says that’s the way it often looks with brain mets on immunotherapy … They call it:  Psuedo Progression.

This evening Eddy took me to REI to acquire some Black Diamond Hiking poles to keep on trekkin’ with less risk of falling. A BEST day!

Favorite Things

Dad, what are some of your favorite things you’ve done with your children?

Chad and Ryan contemplate another dip in the Deschutes near White Horse Rapids

Rafting the Deschutes

Central Oregon is a high desert, greened by Rivers beginning on the eastern slopes of the Cascade Mountains. The Deschutes River runs northward from South of Bend to the Columbia River. Below the dams, at Warm Springs, the Deschutes runs free, delighting fishermen and boaters.

I had discovered the bliss of the River Boating in the middle 1970s when I joined a group for teen boys and Dads led by Gary LaRue and Homer Ames at the Beaverton Christian Church. This  program was noteworthy because boys and their dads were invited to build eight-foot wooden prams from kits sourced from a river rat who had started a similar program in Idaho. Chad wasn’t old enough and Corina wasn’t eligible because of her gender. I enjoyed the River boating so much that I wanted to share the activity with my children.

After I left our family home, in 1985, I fell in with some people who had taken an interest in counseling and personal growth. My closest friends (Sherry Downs, George Celia and Peggy O’Brien) were in the Quest Fellowship,  started in the 1970s by Dale Jamgaard of Lutheran Family Services. Some of us were enthusiastic about river rafting and we began planning a Deschutes River trip each year. We depended on Mark Snead, who owned a rental company in Beaverton. Snead Rentals had some re-purposed surplus life-rafts with home made wooden frames for river boating.  Mark was indeed our leader, though some of us might have different ideas about how to raft the river.

On at least a couple of our large group rafting trips, I planned ahead for Chad and Corina to fit these into their summer schedules. Large group trips were complicated, with plenty of room for interpersonal conflict and disagreements about what to do and how to do it. Nevertheless, I remember them for the warm interaction among friends and the opportunity to introduce my offspring to my new friends.

Chad, Ryan, Peg, Reese, and Corina hiking to the rimrock for a different view of the River

Had I gotten the fly fishing bug, I could have tried to indoctrinate my offspring into that splendid sport. But it was enough to take a hike through the rimrock to view the river from far above and become genuinely weary for sleep.

 

 

 

Nature Therapy

Marty at fork in the trail, gaining strength to proceed

“This is crazy, she is telling me to go back to Highway 43 South to Lake Oswego again”, Eddy said.

I replied, “We already did that – GPS is in a loop. Ignore her; turn right at the next light and it will take us down to OHSU.”

“OK, but I just hate it it when Roberta gets fouled up,” Eddy said, referring to the woman in our GPS.

I need a break from modernity with all its helpful smart devices and services demanding attention and obedience. I want to set out on a footpath without electronics, maps, guidebooks and cameras, just put one foot in front of the other at a pace that is comforting. Or maybe paddle a kayak, even in the city, pushing off from the shore, letting go of a deep breath. Whew.

I’ve wondered if being in nature is good for my health, given that walking outdoors, and especially being in the forest feels good, even if I return home tired and sore. On the new popular books cart at Multnomah County Library, I noticed The Nature Fix, by Florence Williams. She recaps her travels and interviews to answer the question: does regular activity in nature improve health? Based on her interviews Florence makes a convincing case that science says yes!

I’ve decided to plunge into Nature and spend more time during the summer of my 70th year, in the Cascade Mountains taking some nature therapy. Yes, there are a tri-weekly infusions, imaging, medical appointments, and life to work around. Nonetheless, it seems doable and worthwhile. Eddy wants to come along; time to seize the day!

 

 

Infusion Center

Marty gamely receiving an intravenous infusion of Pembro at Providence Cancer Center

During my 2014 treatment at Providence Cancer Center, I was hospitalized in a private room because Interleukin-2 infusions required continued monitoring for dangerously low blood pressure. Now in 2017, need for further treatment brings me to the out-patient infusion center, a familiar setting for most cancer patients.

A typical infusion center is a large room with stations where individual patients spend part of a day receiving an intravenous cancer-fighting drug. At Providence Cancer Center, patient lounges are arranged in a semi-circle along window walls of a large room at the Northwest corner of the sixth floor.

The infusion center is staffed by several specialized nurses experienced with managing cancer patients and their treatment. Each nurse works with a few patients concurrently, cycling them through drawing blood, reviewing lab results, verifying eligibility for treatment, administering the prescribed treatment, and sending the patient on their way. Two nurses cross-check each other when the prescribed treatment is sent from the pharmacy to avoid any mistakes.

I have mixed feelings about being treated in an open setting. On the one hand it’s possible to interact with other patients and caregivers and be sociable. On the other hand it’s possible to become disturbed by witnessing the experience of other patients and caregivers.

At my last infusion, the patient located at an adjacent station was a middle-aged woman, wearing a surgical mask and a knitted cap. She was accompanied by healthy older woman, her mother. The patient seemed uncomfortable and agitated. Apparently, the patient’s nurse had detected a medical concern and called an oncologist for a consultation.

The patient’s oncologist visited her at her station and they discussed her experience since her last infusion. She reported that she had been experiencing nausea and diarrhea, and her mother added that the patient had been unable to keep nourishment down for a few days. Her doctor said he was concerned about her safety and that this would be a reason to withhold further treatment if it continued.

The patient gradually became more upset and insisted on continuing with her treatment. When the doctor left, the patient scolded her mother for revealing information that might cause further treatment to be withheld, and asked her to be quiet.

I guessed that the patient was terrified about losing access to the prescribed treatment. This upset made sense to me, because she might not have any other viable options for treatment. I felt sad and worried for her. The patient’s mother remained at her side holding her hand and stroking her arm.

The patient’s nurse next called for a pharmacist to consult about the drugs already prescribed to manage her side-effects during treatment. Apparently she was taking several drugs, and the pharmacist recommended being more careful about the timing and sequencing of these drugs. The patient’s mood improved as she learned some constructive things that she could do to take better care of herself during the time before her next infusion. The two women left the infusion center, in good spirits. I admired the nurse who had managed the patient’s need for information in addition to reassurance.

As for me, I’ve now received two infusions with tolerable side-effects including fatigue, joint pain, itching skin, and chest pain during aerobic exercise. Prior to the next infusion, I’ll have CT imaging that will provide objective information about whether my treatment is helping.

It seems that my infusions cause much less grief than other patients experience and hope this helps my body stop the cancer.

What to Say or Not

Hospital Visitor with Flowers

According to the National Cancer Institute, about 40% of men and women in the US will be diagnosed with cancer during their lifetimes. Nearly everyone will eventually have a close connection to someone who has cancer and/or become a person with cancer.

Now that I have some experience on both sides of being a person with cancer and having friends with cancer, I’m sharing a few suggestions hoping to help you deepen your connection with your friend or friends with cancer.

Examples below all start with a comment to avoid, then explain the problem, and suggest another approach.

“Cancer is so frightening, but I know what you are going thru, and I’m here for you.” – You can’t know what your friend is going through, physically and emotionally, because every type of cancer has different signs, symptoms, treatments, prognoses, and outcomes. Each individual is different and two people with a similar diagnosis will have different experiences. Try saying, “I would like to know what you are experiencing, what are you going through now?” Continue reading What to Say or Not