We met Thursday with our new oncology team at OHSU and came away feeling like we will be in good hands. Everyone — oncologist, oncology nurse, research/trial nurse, social worker, customer support on the phone, strangers in the elevators — seemed smart, informed, kind and helpful.
The new plan begins with a biopsy to evaluate whether Val has any genetic mutations for which there is targeted therapy. We knew this would be the plan and tried to get a biopsy done at Kaiser weeks ago, but since Kaiser wouldn’t be using the biopsied tissue for anything, they couldn’t put it down as medically required and our insurance wouldn’t allow it. This is doubly unfortunate now because turns out it would have been easiest to get a biopsy from the tumor above Val’s clavicle, but that one was zapped with radiation for the last two weeks and now the tissue is necrotic. Same with the largest tumor mass around her esophagus and bronchial tubes (which is why she’s suddenly breathing so much better, which is awesome). So they will probably do a bronchoscopy and extract tumor tissue from somewhere else in her lungs. They did a CT scan today (Friday) to get the most up-to-the-minute data about how to proceed. DNA results from the biopsy will probably take 3 weeks to come back.
It looks like Val is probably eligible for a trial of Tarceva. Tarceva is already known to be helpful for certain cancers as a first line of medical attack; but it may also be helpful for other kinds of cancers, or cancers that have stopped responding to other treatment. This is what they are studying. As someone who has never been on Tarceva, and depending on what her DNA tests show in a few weeks, Val will probably qualify for one of two branches of the study: those whose DNA shows they are EGFR-positive, and those who are a “wild type.” One third of the participants in this study take a daily Tarceva pill. The other two-thirds take the daily Tarceva pill and also have an infusion of MM-121 every two weeks. The study is randomized but not blind, so if Val is accepted, we will know what category she is assigned to.
Possible side effects of Tarceva: fatigue; an acne-like rash (40-60% of people get it, affecting face and trunk, ranging from mild to miserable); and gastrointestinal stuff, usually not severe. She’d get to keep her hair and folks on this regimen usually have good blood and metabolic counts.
We are in the pipeline to get an appointment with the new palliative care folks for help managing Val’s various symptoms and side effects. Everyone speaks highly of the palliative care doctor (maybe he was one of those nice folks in the elevator). We are also investigating whether Val is eligible for any patient discounts, as the new insurance could get pricey pretty quickly.
Although she continues to wrestle with nausea most days (yesterday pretty debilitating), Val’s breathing has improved enormously and her racking cough has dwindled away to almost nothing. Today with Brooke she actually walked our once-traditional route up Mt Tabor (volcanic cinder cone turned city park). The effects of the radiation — mainly fatigue and excruciating difficulty with swallowing — continue, but they should abate in a week or two. She’s building strength and it looks like we’ll be able to time things with OHSU so that she can make a visit home to Montana this month, something she’s longing to do. I wish I could join her, but I’ll be making my own trip to visit family in Oaxaca, Mexico. We are both excited to get out of town and visit people we love. And I’m looking forward to having warm feet.
Love,
Deborah
Aside from the “excruciating difficulty with swallowing” there seems to be much in the way of good news here (I’d like to say swallowing is highly overrated, but that seems like a stretch, for sure). I will visualize you each frolicking happily in your respective climates (and hoping you bring an extra pair of warm feet back for me!).
Thanks for writing all of these updates Deborah. As someone who has mostly loved you all from a distance, it helps me to feel connected and to understand the shifting gravity. Happy New Year and new options!
yes. thanks for all these posts. go ohsu!
That is hopeful news. A new team will breathe new life into Val. I continue to be amazed at Val’s wisdom, strength and determination. Deborah is right: it’s a new year with new options. Love to Val and her support team.