February 2020 Updates: Intuition Edition or “My Oncologist is Trying to Kill Me”

Previously on…

Following December scans that showed new brain activity, Maggie had consulted three specialists in the US and come out with a “consensus” of either radiation necrosis or leptomeningeal disease with two out of three leaning towards radiation necrosis. A wonderful neuro-oncologist took time to dig into the details of her case and the latest research and showed her comparison images demonstrating the necrosis could be seen forming in the October 28 2019 scans. She returned to Hong Kong for brain and spine MRI February 20.

I’m very happy to say that the results of this week’s scans don’t indicate leptomeningeal disease. Hooray that!

The area of activity has grown significantly to 2.5 x 1.1 x 1.8 cm which, according to the radiologist’s report “likely represents new cerebellar metastasis.” My oncologist read that and is convinced it’s a new brain tumor. My biggest yet.

Here is why I know it’s not a new tumor:

• It’s almost impossible to differentiate treatment necrosis from disease progression from an MRI as documented in this paper by The Society for Neuro-Oncology and Oxford Press titled Differentiating tumor recurrence from treatment necrosis: a review of neuro-oncologic imaging strategiees. Nevertheless, there are hints.
• Also according to the report, “no significant mass effect or midline shift is seen.” It is cloudy rather than the clearly defined margins of my other 4 tumors. It is RIGHT in the path of April’s radio surgery directly adjacent to a previously treated tumor. (Which I know, my oncologist does not remember.)
• According to a recent paper published in Frontiers in Oncology, Brain Radiation Necrosis: Current Management With a Focus on Non-small Cell Lung Cancer Patients, there is a noted “increased incidence rates of RN in NSCLC patients with oncogenic driver mutations … or receiving tyrosine kinase inhibitors.” I have a driver mutation and have been taking a tyrosine kinase inhibitor for over a year. Add to that the fact that I had 2 rounds of SRS within 6 months which would put anyone at risk – I had to sign a disclaimer to that effect.
• My blood tumor markers are still perfectly normal in my blood test taken the day of this scan. Last time my body tumors were stable but I had new brain progression, my markers shot through the roof.
• My oncologist doesn’t even look at the pictures of my MRI and only reads the report, often only the 2 line summary of the 2 page report. Furthermore, this MRI wasn’t compared to December, but only the October MRI – this radiologist didn’t even see the activity in October when my US oncologist was able to clearly point it out on screen.

So, it’s radiation necrosis. I’m certain.

What is so frustrating is that my HK oncologist wouldn’t even consider the possibility. He wants to treat with another course of radiosurgery or whole brain radiation, both of which would quickly kill me if this is necrosis and will massively increase my risk of necrosis even if it isn’t.

The only reason I continue to see him is that he pretty much goes along with whatever I want as long as I pay. If we were to somehow find out this is a new tumor, I’d want to try other TKIS (entrectenib was just approved for ROS1+ and is available in my HK hospital) or immunotherapy long before another round of brain radiation or open brain surgery. Huff.

I’m so so lucky that I know to do my own research and am in a position to get a second opinion but it breaks my heart that most folks out there just follow the treatment plan of their doctor and die so much earlier.

Oof. I’m feeling ragey right now.

I am incredibly lucky and grateful that this isn’t cancer progression. Even so, radiation necrosis is no joke – my brain tissue is dying. The treatments that will help are:

1. Hyperbaric Oxygen Therapy (HBOT). Sadly, like all metabolic therapies, there isn’t a ton of high quality double-blind, placebo studies to support this yet but there is mountains and mountains of anecdotal evidence. Most oncologists won’t prescribe it because of absurd assumptions more oxygen will spread cancer. Because the combination of HBOT and keto has already been shown to fight cancer, I’ve always picked up session when I could while visiting Los Angeles. Out here it’s much harder without a prescription but I need to find a way to get 30 sessions at 2.0-3.0 atmospheres. Wish me luck.
2. Meditation. Neuroplasticity is real, amigos. Look forward to a future post =D

I’m incredibly excited for the chance to show that, like stage 4 cancer, radiation necrosis is not a death sentence. And hopefully raise awareness with those wrongly diagnosed with progression.

In other news, I’m super honored to have earned a place on feedspot’s Top Cancer Blogs list! Looking forward to moving up in the rankings as I flesh this out with more resources for those facing their own diagnosis.