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Home My StoryMedical Updates May 2021 Updates: Not So Fast, Cancer

May 2021 Updates: Not So Fast, Cancer

by Maggie Jones

Previously on… I had gotten some slightly dire news from my favorite neuro-oncologist in March. Digging and testing on my own in April made me a little suspicious of his prognosis.

April suspicions brought May vindication and, after my most recent scans last week, the whole teams finally agrees:

  • The four lesions in my brain are radiation necrosis from previous treatment of those four tumors, not cancer progression or leptomeningeal disease that’s going to kill me imminently.
  • Well, they still think the first lesion in my right cerebellum has the lepto but they’ve been saying that since December 2019. There’s no way to know for sure without cutting open my brain. Necrosis creates a perfect environment for cancer so it’s something I’ve long expected. The three newer lesions appear cancer-free along with the rest of my body.
  • My brain is still massively swollen and I have my first evidence of midline shift, which could be a bummer. I have mild aphasia and a handful of mild seizures every week despite meds.
  • Overall everything is relatively stable, which is crazy awesome. Even my neuro-oncologist was unusually positive – crediting HBOT after his months of initial skepticism. 

Assuming no changes, I get to watch and wait for two more months.

The Big Goal – Healing Brain Radionecrosis

My main goal now is to heal the necrosis lesions before they prompt new cancer or disable me further.

It’s possible that they can resolve on their own. My doctor says there’s a 20% chance but I have special tools like HBOT, meditation, exercise, and fasting. I’m working on getting sauna access – something I’ve missed a ton since we left Hong Kong in 2020. I think this could be a real possibility for me.

If the necrosis doesn’t heal on it’s own, there’s an infusion chemo (Avastin/  bevacizumab) that has been shown to help reduce brain swelling. In the US it costs over $100,000US for the 3-4 infusions I’d need so I’ll start looking overseas if that becomes necessary.

Personally, I’m keen to get off the steroids. I’m up to 3-4mg of dexamethasone a day plus the anti-seizure meds. I still have breakthrough symptoms but can’t bear the side effects of taking more. As it is, I can barely recognize my puffy face in the mirror and nothing fits no matter how long I fast. (Seriously, 16 days of water fasting in March and I gained 2 lbs overall. My fasted blood sugars are almost in diabetic range.) Docs insist it’s not a huge dose under the circumstances but it’s a challenge. Especially for poor Brad who has to deal with my constant ‘roid rage. It’s great for my mindfulness practice but not so much for our marriage.

And the Cancer?

I almost forgot. Cancer-schmancer. Even if it’s there, it’s a known quantity and the least of my worries while it’s confined to that one area of necrosis.

But Mostly

The goal isn’t to heal and then start living my life. It’s to live my life now in a way that supports healing. The documentary, book, blog… these all give me purpose. I know my aphasia makes communication frustrating but projects keep moving forward and I’m forever grateful for you and this community.

I can’t believe how much I’ve changed in these past two and a half years. The stressed-out, numb, medicated, secretly angry, resentful executive who got cancer is an identity I’m happy to let slip. I’m so inexpressively grateful to have met the spirit that remains. Also, I’m a giant woo-woo hippie now, guys. Apparently meditating for 2+ hours a day for two years will do that to you.

Sometimes I get headaches. (“No duh,” you’d say if you’d seen my brain. “Just opening my sixth chakra,” I say.) Docs offer pain meds and, while I’m sure I’ll go for it someday, for now I just think about how discomfort is simply a part of life. Experiencing life is exactly what I’m here for.

Maggie in Queen Anne Seattle April 2021
Love from Seattle!

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14 comments

Alex May 3, 2021 - 8:33 am

Maggie, I’m so happy to hear it’s not cancer progression!

I’m so thankful for your blog, it’s very helpful. I have tried few recipes, everything is delicious, love that spicy Thai salad and coconut flatbread. I have shifted to a mostly vegan keto diet as well and feel fantastic. Your therapeutic meal plan helps me to stay in therapeutic range, thank you so much for all the studies and knowledge you have posted.

Guess what, my scan results last week were excellent. I had progression in October 2020, now tumors are shrinking. 😀

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Maggie Jones May 4, 2021 - 9:03 pm

Oh Alex! I’m so happy for you! And so happy to find your blog. Thank you so much for checking in and the kind words.

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Ida May 4, 2021 - 8:25 pm

Dear Maggie. So happy to hear that it is not new lesions in your brain, even if more radiation necrosis sounds awful. Great that the HBOT and your other life style interventions seems supportive. Love your words that you live your life now and that you prioritize things that gives you purpose. You are such an inspiration and I think of you daily. Sending love and healing thoughts your way.

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Maggie Jones May 4, 2021 - 9:07 pm

Ida!! Thank you so much for saying hi! I think of you every day, too! You are a constant inspiration. “What would Ida do?” is a regular for me. Just the other day I wasn’t eating mindfully and remembered an old post of you sending off the kids so you could have a mindful meal focused on healing.

Today seems to be an extra good day for me and I’m beginning to hope it’s the new normal! I’ll see you back on IG once I can handle the energy, lol.

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Vasilios Vassilaras May 5, 2021 - 1:16 am

I am so happy to hear you are doing great. Keep pressing on and i am sure tou will win this battle.
Ive been following you for a while as i am dealing with recurrence which is shrinking. Thank god! I wish you all the best and thank you from the bottom of my heart for what you have tought me so far and your great recipes for theralutic ketosis. God bless you. And be strong we are all in this together!

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Maggie Jones May 5, 2021 - 2:11 am

Hi Vasilios! I’m so so happy to hear that your recurrence is shrinking! Such a testament to your strength and hard work with these treatments. Sending you love on your healing journey!

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Lucy May 15, 2021 - 10:23 am

Hi Maggie,

I’m one of those silent lurkers on your blog but had to say I’m so happy for you!!! I cried my heart out hen I saw the progression, that anxiety is real around scan results even with visualisations that the results will be good!

I’m hitting 10mnths into a mTNBC reoccurrence and am at this present moment NED! Like you I’ve pushed for things that aren’t just the norm and have been fortunate to have a professor who has allowed it (I’m in the U.K. on the nhs).
Due to it being inflammatory in the breast skin well we got that sucker off a month ago with an op after hitting Ned with tecentriq and nab-pac at around three months which I will be going back on as I’ve had nearly three anxious months off for my op!!!!! Mine was also in my clavicle on the opposite side (your neck pictures were exactly like mine). Which I’m debating cyber knife for as it is two spots (after you latest post I’m less sure in this) I meditate and do IF I have an IV sauna blanket and supplements.
Not always vegan but any animal products are farm quality not factory. I lose weight so fast on a vegan diet they threatened to stop my treatment!
Your blog was one of the first I read that inspired me to live and take charge. I am still fully in the rejecting any other outcome headspace!
You make me giggle over the hippy vibes as I found god when I’ve always been a strong atheist. It’s amazing how the biggest things can chance you at the very core.

Keep up the good work, being the oncologists unicorn and keep inspiring.

Sending positive healing light

Lucy

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Maggie Jones May 18, 2021 - 6:10 pm

Oh Lucy! I’m so so happy to hear from you! Thank you for taking the time to break the silence =D Your story is AMAZING and every word gives me chills. You’re doing incredible things and will be such an inspiration to others!

Inflammatory breast cancer can be terrifying. The fact that you’ve stayed present, taken control of your headspace, and are NED is beyond words!! I wish I could hug you.

Feel free to shoot me an email about your cyber knife consideration. If it’s on the clavicle and not the brain, I wouldn’t have any concers.

[Also, it doesn’t matter but I want to mention that I’m a huge advocate of animal products for the people it works for – as long is it’s quality animal like you’re eating. It’s the factory farm stuff I can’t get abide by and, since I happen to have been raised vegetarian, I don’t feel like I’m missing out. I know it’s a lot easier to get quality animal products in the UK, too. America is atrocious in that respect but I still manage decent enough organic, pasture-raised eggs and wild-caught salmon. I totally don’t want to come off as a pushy vegan. Everyone is different and for the folks with my proclivities, I do like to show that “mostly vegan” and keto are not mutually exclusive, lol. But I need to be better about pushing the message that it’s not right for everyone lest anyone feel that they’re not doing something “right.” Listening to your body is right! You rock!]

Thank you so so much for the kind words! I hope your day is as bright as you’ve made mine. Love and light!

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Wons May 17, 2021 - 4:17 am

Hi Maggie

I’m not a cancer survivor or someone who has experienced cancer, but I do do alot of reading especially alternative therapies. I’ve already directed your attention in another comment section to Andreas Kalcker with regards to Chlorine Dioxide and how it chemically oxygenates the blood via oral ingestion or IV. Now after reading this post, I feel compelled to direct you to Joe Tippen’s amazing blog post on how he overcame small cell lung cancer with fenbendazole when he was told he only had 3 months to live – https://www.mycancerstory.rocks/single-post/2016/08/22/shake-up-your-life-how-to-change-your-own-perspective

Sometimes fact is stranger then fiction. If there were only one or two testimonials with regards to these therapies, I would probably not give it much thought, but when the testimonials for both these therapies number in the hundreds and thousands, I start to pay attention. If ever I was terminal, these are the two forms of quackery I would turn to.

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Maggie Jones May 18, 2021 - 6:00 pm

Hi Wons! It’s great to meet you! It sounds like we have something in common – I’m also interested in following cancer therapies =D I’ve actually been taking mebendazole (the human equivalent of fenbednazole) as part of the Care Oncology metabolic protocol since June 2019. I recently learned that Dr. Seeyfried’s lab has been studying it as a possible glutamine antagonist to replace DON in their protocol. I spent some time at their lab in February of this year and they were shocked I’d been taking 100mg a day for over a year and a half. Adverse effects have been negligible compared to my other meds, though, and I did increase to 200mg on my last COC review. Anyway, all to say that some of what establishment dogma may have previously claimed is quackery is being exposed as real therapy.

A study has shown that it takes and AVERAGE of 17 years for new research evidence to become clinical practice. I imagine it’s awfully fast for profitable meds like viagra and impossibly slow for therapies with no profit potential like fasting. I’m not sure if you’ve read but Brad and I are working on a documentary to bring the latest research evidence to people sooner – CANCEREVOLUTION seems like something you might enjoy.

Best! Maggie

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Karen May 28, 2021 - 3:36 pm

Hi Maggie,

I first would like to thank you for all the information your provide in all your blogs!
Your determination and bravery inspired every one of us that are going through a cancer diagnosed. I was diagnosed with inflammatory breast cancer back in August last year. I had given birth 10 month before and I was breast feeding my 2nd boy. It was devastating as it was stage 4 from the get go! As it had spread to my spine, pelvis, and two ribs. I have two boys and I was too busy as a new Mom to even think about my health. I started to do my own research and found Care oncology and started their protocol right away. I am doing my oncology treatments with my natural alternative therapies as well! All natural supplements, vitamin C, fasting and mostly vegan diet. I really wanted my breast removed but two surgeons have said it is not worth the risk. I feel frustrated as I am not sure what to believe! I am doing very well as my tumour markers are 0.4 and 13 right now. I have faith that will be here to see my boys go off to college one day!! God has showing me the path to healing through all you wonderful people! You , Jane’s and Nasha’s book have been my inspiration xoxo

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Maggie Jones June 1, 2021 - 4:35 am

Oh Karen! Thank you so much for the kind words! Especially in the face of everything you’re going through. I just can’t imagine this journey with young boys. They way you’re demonstrating your agency is so remarkable and inspiring! I know you will experience all the milestones to come – and the results already just show it. I’m so proud and inspired. I’m sending you all the love in my heart!

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Paki August 2, 2021 - 7:05 pm

Hi Maggie!
I’ve been thinking about you, missing you on IG, so SO glad you are well! I’m back on keto after a stint with WFPB and of course, the first recipes I turn to are yours. It’s hard having such a restricted diet, but your recipes make it easy and delicious. THANK YOU SO MUCH FOR ALL YOU DO!!

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Maggie Jones August 4, 2021 - 1:24 am

Hi Paki! I’m sorry I’ve been so bad about social lately but there has been so much going on here =D So, as part of the therapeutic ketosis class (3/10 filmed, one almost done!) I’m putting together a recipe book with some of my favorites. I was planning to reach out to you to see if you’d be willing to test a few as soon as it’s done!
xoxoxox

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