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

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

by Maggie Jones
8 comments

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.

Radiation necrosis or cancer progression? I think it's radiation necrosis.
Textbook radiation necrosis

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.

MRI Center Hong Kong Adventist Hospital

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.

Also, Hong Kong is FREAKING OUT over coronavirus. It’s insane. The receptionists take everyone’s temperature before letting you into yoga. Trying to get into the hospital required a full exam.

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.

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8 comments

Shirley Horn February 27, 2020 - 4:12 am

I’m glad you are so focused on increasing your knowledge and understanding of what’s happening to your body. Knowledge gives you strength to move forward. As always, sending love your way!

Reply
Maggie Jones February 27, 2020 - 5:20 am

Thank you! Hard to believe it was just a year ago that I felt such panicky need to listen to my doctors and treat right away. Now its a peaceful desire to listen to my body and make sure I’m living the life I want.

Thank you so much for your love and support all this time! That’s what gives me strength <3

Reply
Becca C February 27, 2020 - 10:48 pm

Oohh! I just LOVE being able to get the full story instead of just the IG cliff notes version! You are a warrior and a shining example of what all cancer patients should aspire to be. I know you are helping thousands of people with your story and knowledge.

Reply
Maggie Jones March 10, 2020 - 5:31 am

You are so incredibly kind. When I was first diagnosed all I wanted was for Brad and my doctors to think I was strong in the face of death and a good patient. HAHAHA! Given what a pain in rear patient I am these days, I almost don’t blame my oncologist for wanting to kill me =D

Reply
Rob Harol March 7, 2020 - 2:25 am

I honestly don’t have words. I remain in awe of you on so many different levels. Please keep doing what you are doing.

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Maggie Jones March 10, 2020 - 5:29 am

Dude! I cannot tell you how much your support has given me strength to speak up an trust myself. Thank you beyond words!

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gema maria garcia reina March 12, 2020 - 12:25 pm

I admire you, and I thank you for your publications full of information. Has considered cannabis oil or bee venom therapy, I have found in these two that they lowered my inflammation and raised my defenses. sure you have an opinion or knowledge about it

Reply
Maggie Jones March 13, 2020 - 5:21 am

Hi! I do take CDB when I can access it legally in the US. I’m always in the market to lower chronic inflammation so will look into bee venom therapy. I’d read about it in my pre-cancer days but didn’t realize it had anti-cancer potential. Thank you so much for pointing me that way!!

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