At Portland Providence Cancer Center, A Palliative Care Office” is staffed andempowered to provide relief from the pain and stress the goes with being cast in the part of a person with a serious illness
Palliative Care, unlike Hospice Care, encourages continuing treatment of disease causes and Symptoms. w hile continuing to offer comfort andrelief from pain
I was referred toPalliative Care by my oncological care team was on June 10th,by my Oncological Care team and entered another of blizzard ofChange happening_Too _fast.
I am fortunate to qualify for targeted melanoma treatment with two compounds useable on mutations expressed in my particular melanoma genome, especially since my recent treatment with Pembro was complicated by immune-related adverse effects, motor impairment and loss of personal mobility. Clinical trials have produced better-than-usual response rates, and this response is often experienced quickly, within days or weeks.
Concerns are a litany of serious side effects. Care teams like mine are developing techniques to help moderate side effects and tweak the treatments, especially at research hospitals like Portland Providence Cancer Center. Continue reading New Treatment Decision
My last post on Pseudo Progression introduced “immune related adverse events”(IRAE’s). My brief experience with IRAE’s follows.
I was on a roll with nearly boundless energy– beginning with a slight left-foot drag, motor nerve impairments piled-on and within days my left leg was paralyzed, and left arm weakened so that I cannot raise nor use it normally.
In the interval of ten days I have changed from feeling healthy, energetic, and optimistic to wheel-chair-bound and dependent on a caregiver for most adult tasks of daily living.
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!”
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!
“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!