Update from the Appointment Today
Jason here with an update from today’s appointment.
First of all, thank you for your prayers and concern for Lindsey, me, and our family. It is truly too much for us to process fully and we will be spotty at replying but know we do eventually receive the texts, emails, notes, etc. In fact, we just will not be able to reply to it all. And also, thank you for the gift cards, meals, and other tangible gifts. We are so humbled by this outpouring of support, are truly grateful and feel very loved.
Our oncologist confirmed that Lindsey is progressing under her current treatment. The cytology result of the fluid drained from the lining surrounding Lindsey’s right lung last Thursday has been confirmed as having metastatic cancer cells present. In addition to the pleural effusion, there are spots of new/larger cancer along her lung wall, as well as in a chest node, and a new spot (or a few spots) in her left lung. The presence of these three or four findings indicates Lindsey is progressing. As such, the next step is to have another biopsy to determine if what’s driving this progression is characterized by a new genetic or molecular marker we can then target, much like Tagrisso has targeted the EGFR mutation up to this point. So, if there’s a prayer, pray for some weird or rare mutation/marker to show up on this biopsy so that we can pivot to another targeted therapy in lieu of something less specific. The biopsy is performed via a blood draw and is known as a liquid biopsy. So no surgery is required for this biopsy. Linds had the blood taken this afternoon and we’ll get those results in a few weeks.
In light of cancer progression, our oncologist is recommending a switch to an aggressive, chemotherapy-based regimen that’s standard for treating lung cancer in the absence of a specific marker that would indicate a targeted therapy or immunotherapy as a more preferred option and route of therapy. The new course of treatment would include two chemotherapy drugs, one immunotherapy drug, and an antibody that aims to disrupt blood supply to tumors. Unless the biopsy would indicate a certain marker for which a specific therapy exists, this is the likely next step.
For chemo, Lindsey will have a port installed in her chest. The medicine is given through a 4-5 hour infusion once every three weeks. The plan would be to put Lindsey through 3-4 cycles of this 3-week treatment and then have another CT to evaluate her body’s response. Expected side effects are what we usually think of for people having chemo. The side effects vary by person and can range from mild to severe. We expect Lindsey would likely lose her hair through this. In addition, the side effect we most expect is fatigue. She could face nausea and have some other organ side effects. The other expectation through this is that her white blood cell counts (immune system fighters) will decrease through treatment. As such, she’ll be more susceptible to infection. Linds would likely decline to a low point 7-10 days after each infusion and then recover in time for the next infusion roughly 21 days after the previous one. For any patient, staring down a course of chemotherapy is a daunting prospect, a prospect that generates anxiety and fear and probably more questions than answers. For Lindsey, this prospect and her thoughts/feelings are no different. Please pray for her.
With regard to clinical trials and a second opinion, we discussed those with our oncologist. Lindsey has been the topic of a lot of conversation, tumor board discussions, and the research group at the Cancer Institute over the last week. Our medical oncologist is supportive of us seeking a second opinion. She brought it up at the beginning of the appointment and said she’d support us in making contact wherever we’d be interested pursuing one. We trust her and the care team but know that other input or opportunities could be a good thing. But we are so overwhelmed at the moment and probably won’t make a decision regarding this until we get the results of the new biopsy, or at least not until we can process the new load of information in the coming days. Any trial or new approach would likely be incumbent on the revelation of a new genetic or molecular marker now expressing itself that wasn’t present on any of Lindsey’s previous biopsies or cytology results in the last year. Clinical trials are available at the Cancer Institute but they’re very specific and are for patients after chemo, which Lindsey has yet to have.
In the coming week, Lindsey will also have a brain MRI. She doesn’t have any cognitive symptoms but, because this cancer can spread to the brain and because she’s progressing in some new areas in her lung, the oncologist wants to get an MRI of the brain to cover our bases and take a look, to be on the safe side. Pray that Lindsey’s brain would remain clear of anything that shouldn’t be there.
Lindsey’s start date for chemo is to be determined in the coming week(s). Lindsey will continue on Tagrisso in the meantime. Lindsey’s oncologist is deferring to us and our preference for when to start. We think we want to wait on the biopsy results before we proceed, especially if there remains a slight possibility of another targeted therapy as a result of the biopsy. Pray for us to have wisdom and clarity around the chemo-start decision.
Last but not least, please pray for our four boys. Our older three share a room (Wright 8, Thomas 6, and Henry 4). Last night we told them about our appointment today and Thomas asked Lindsey if she’d be embarrassed if she lost her hair during cancer treatment. Last night we said we’d let them know if we thought that might happen during mommy’s cancer treatment and, of course, Lindsey told him tenderly and honestly that she doesn’t want to lose her hair and that embarrassed might be a word she’d use to explain the feeling around it. Tonight, we told the boys that this may be a likely result of upcoming treatment and all three had a different take. Wright thought it would be cool, Thomas echoed his previous sentiment, and Henry wanted to know how the doctor would make it fall out. A bit of levity but, at the same time, it’s a heavy prospect to know how to include the boys in mommy’s journey and keep them informed in a way that’s beneficial to them. Pray for wisdom for us and God’s grace toward them as we continue to navigate this cancer journey with (and also for them) in the days to come.
