Chapter 6B: What I did: Brain Metastases

Cancer is typed and treated by its origin, regardless of where it travels to. Western medicine’s ‘standard of care’ (SOC) is determined by that origin. In my case, primary breast cancer metastasized to bones, lungs, liver, lymph and eventually brain. My treatment plan reflected that and differed from someone whose cancer had begun in their lungs and traveled. So, one’s lung cancer brain metastases will be treated differently than another’s breast cancer brain metastases. That being said, there are some principles that apply in any case.

Brain metastases

One year after Stage IV diagnosis, I was walking (in spite of being told I would likely never walk again because of the tumors having split my sacro-iliac joint and crumbling 7 vertebrae), felt great, and felt I was going to live a long time, in spite of doctors’ prognoses. Then they discovered 9 brain tumors. Worse, it was leptomeningeal carcinomatosis, meaning the protective tissues surrounding the brain (blood-brain barrier) were involved. It is a fatal diagnosis, median survival is 2.8 months from diagnosis, and only rare reports of survival up to 20 months. I had just lost a mets sister 3 weeks after her diagnosis of leptomets. They said that’s about how long I’d have. Going on more than 6 years since diagnosis, I may have the world survival record and I’m NEAD!

3 weeks after I instituted a naturopathic protocol, 4 of the 9 brain tumors/mets were gone without a trace, including the largest. Doctors could not explain their disappearance but I was now eligible for targeted radiation for the final 5. I have been NEAD since May 2014… a miracle of sorts… attributable to both naturopathic and western medicine. Truthfully, if you have brain mets, I don’t know what you should do. I share my path with hope it is helpful to you.

CCT options:

The brain is protected by a membrane of tissue (meninges) that controls what can enter. This membrane, the blood-brain barrier (BBB) keeps large molecules out, protecting us from pathogens but also making it difficult for drug administration. Most chemotherapies can’t cross the BBB. I am HER2+ and the immunotherapies, Herceptin and Perjeta, appeared to be working well in my body but they also do not cross. Tykerb (Lapatinib) and Xeloda (Capecitabine) are forms of chemo that do cross but have limited effect. The most we could hope for was buying some time. I tried Tykerb and it was by far the most toxic thing I have ever taken. First it shut down my liver, then my pancreas, then I had heart pains. Yes, I kept stopping and starting because I was desperate, but I stopped after taking just a few doses.

They did a lumbar puncture to see if I had cancer cells in my cerebro-spinal fluid and my oncologist thought, “well, while we have the access, let’s put a dose of Methotrexate in there.” Again, it wasn’t known to have much effect but perhaps buy some time. It gave me a painful shingles-like rash reaction with pus-filled sores all over my hands, feet, and torso. They offered whole brain radiation (WBR). I knew many people had had it and said it wasn’t so bad but I had also read horror stories of 50% cognitive deficit and 50% permanent hair loss… in patches! I viewed it as One Flew Over the Cuckoo’s Nestmaterial and declined. Because I had 9 tumors of varying sizes and varying locations, targeted radiation was not an option for me.

– Current and Emerging Treatment Options for Brain Metastases

Naturopathic options:

I do not judge another’s path… we all make decisions based on what we feel is appropriate for us. The options western medicine presented underwhelmed me. And, damn it, I wasn’t done fighting yet! I believe the 3 naturopathic options I employed were the primary reason the 4 tumors disappeared. I don’t know if it was one method, all three, or a combination. These naturopathic methods are covered in more depth in Part Two: Protocol Principles.

  • Cannabis and Cancer

I had been taking CBD oil (negligible THC) since I don’t like to be high. Reading that it crosses the blood-brain-barrier and kills cancer, I drastically increased my dosage. I was previously taking 4 drops per day and I started taking 4-5 swallows. Now I take an oil with higher THC in it right before bed and the high doesn’t bother me. I have wild dreams but sleep like a rock and wake up rested. Read more about Cannabis and its demonstrated success in fighting many kinds of cancer, including other primary cancers in Principle 5:Killing Cancer.

  • Root canal removal

I had heard of a relationship between root canals, dental health, and chronic diseases such as cancer. The universe works in mysterious ways and an article stating that 97% of terminal cancer patients have root canals just happened to pop up in my surfing. I had reason to believe I had an asymptomatic chronic infection in my mouth and the largest tumor was by itself and within inches of the tooth that had a root canal.

Intrigued, I discussed the possibility with my naturopathic dentist that I could have an infection that was compromising my immune system and playing a role in my cancer. He wholeheartedly agreed that it was a possibility and agreed to remove the tooth in question immediately. Sure enough, there was a raging infection in there even though I hadn’t had any symptoms. That nearby large tumor is one of the ones that disappeared without a trace immediately after removing the tooth/root canal/infection. More later.

  • Meditation and healing

Once again, the universe showed me that there are no coincidences. Two books and an article I happened to be reading convinced me that I could harness the power of my mind to heal. It was clear to me that others had done it and that there was a scientific basis to it. I spent several hours a day in directed meditation to heal my brain metastases. (More in Part Two: Principle Six)

Back to CCT:

So 6 weeks after diagnosis, 3 weeks after employing these methods, a brain MRI showed that 4 of the metastases, including the large tumor near my tooth, had disappeared without a trace. The doctors were incredulous and conceded it was extremely unlikely that one dose of Methotrexate or the few doses of Tykerb could have done it. They were convinced I must have been misdiagnosed. Possibly something was hinky with my scans because they were from two different facilities. We watched and waited for progression in the remaining mets. 3 months later, 3 mets had remained stable but 2 had doubled in size. It was unclear whether there was, in fact, leptomeningeal involvement.

I stamped my feet and asked, “Were there in fact 9 tumors and now there are only 4? Do I have leptomets or not?!” I insisted on an independent evaluation of all scans by a 3rd radiologist. Yes, I had 9 and now I only had 5 and no one had an explanation as to what had made 4 disappear. And yes, there was leptomeningeal involvement. Whatever had gotten rid of 4 was not working reliably on the remaining 5. The mets were still very small, but two showed progression and you don’t want to ignore progression in leptomets. Now that I had progression and only had 5 mets left  and located right next to each other, I was a candidate for stereotactic radio surgery (SRS), or targeted radiation.

In SRS, they take hot plastic mesh, mold it to your face and drill it to the table beneath you so that you CANNOT move. Then they circle you with this Star Wars laser gun, shooting radiation from many angles (it took two physicists a week to do the math to calculate the vectors) in a starflower pattern. Where the vectors intersect is where the tumors receive 100% radiation. The rest of the brain receives less, just what’s passing through, so the damage is not near as extensive as WBR. Pretty cool, huh? I had 5 SRS ‘surgeries’ in May of 2014.

Current status:

My follow-up MRIs have shown me to be NEAD since. Although, my brain MRI of June 2015 showed a large mass that suggested new metastatic involvement and everyone panicked. I took the scans home, opened them on my computer, and compared them to the previous metastases. The new mass was right where two of my previous mets had been before SRS. I remembered the radiation oncologist who did the SRS told me that two were very close together and he was going to treat them as one. Could this new mass be scar tissue? I wondered. Now in yet another state with yet another set of doctors, I sent the scans to the RO that had done the SRS and he said, “No, it looks like new metastatic activity to me. I suggest more SRS.”

I really didn’t feel cancer was back and I reallydidn’t want to give up NEAD, so I stubbornly pushed on and went to a new RO. He looked at the scans and said, “I think you’re right! I think it’s scar tissue!” He ordered an MRS (magnetic resonance spectroscopy) which provides additional data as to the chemical makeup of the mass. It supported the ‘scar tissue’ theory as have all subsequent MRIs. So, that’s my story and I’m sticking’ to it!

October 2019 did present me with a recent scare when they found a large tumor in the center of my brain that was closing off my ventricle and putting me in danger of sudden death by brain herniation. For the third time, they told me I had only weeks to live. I completely eradicated the tumor with cannabis and meditation… details will be provided in an upcoming post (I was done with with Book 2 by then, so it is not included in these posts from the book). So, I’m NEAD again!

So, WTH?

What worked, what didn’t? Here’s my theory… Tykerb and Methotrexate only poisoned me and did no actual good. In fact, I had two more doses of Methotrexate afterthe 4 tumors disappeared, had horrible reactions, and still had progression after that. They most likely had been ineffective as anticipated. I think removing my infected root canal tooth solved the problem of local immune suppression so my immune system could work with the cannabis oil to get rid of the largest tumor next to the tooth. I think Cannabis and meditation were primarily responsible for the disappearance of the 4 mets/tumors.

Why did they not work on the remaining 5? Well, 3 remained stable. Perhaps the two that progressed were more aggressive or more difficult to reach or affect? Targeted radiation succeeded in getting rid of those final five. And side effects weren’t bad. I believe my detox regimen minimized those. I figure I lost 20 IQ points but people seem to like me better stupider as well as shorter…. hahahaa. (I am 4 inches shorter because of the crumbled vertebrae.)

More on brain metastases

An estimated 10% to 30% of all breast cancer patients will eventually develop brain metastases.1 Breast cancer brain metastases (BCBMs) diagnosis has the shortest survival time compared with other sites of metastatic spread. HER2+ and triple-negative breast cancer have the highest incidence… 30-55% of patients with metastatic HER2+ disease will develop them.2 The impermeability of the BBB is the hurdle to overcome when fighting them. Check the Table ofSubstances(Part 3) to see which cross the BBB and kill cancer. Substances of note are Cannabis, Frankincense, Modified Citrus Pectin, and Honokiol.

I have heard four theories as to why HER2+ cancer has a higher incidence of brain metastasis: that people are living longer because of Herceptin so there is more chance for it to move to the brain; that cancer cells are smart enough to cross the BBB to hide where the Herceptin can’t get them; that there is actually something about Herceptin that increases the ‘stickiness’ of the cancer tendrils which allow it to successfully metastasize and; that there is something about HER2+ cancer cells that find the brain easy to metastasize in.

There is a theory that targeted radiation to the brain may compromise, ‘poke holes’ if you like, in the BBB, allowing large molecules through.3 In fact, there are medical programs that are doing it on purpose.4,5 Normally this would not be good news but, in the case of immunotherapies that are successful systemically (Herceptin, Perjeta, and Kadcyla, for example), the ability for such therapies to cross into the brain and work their magic, is great news. In my case, it does not explain the disappearance of my 4 tumors before I had the treatments but it could mean that my monthly infusions are now helping to keep the cancer at bay in my brain. I believe the cannabis oil is helping as well.

The FDA has just approved a chemotherapy combo with potential implictions for HER2+ breast cancer brain metastases. This article doesn’t even mention it, but Neratinib crosses the Blood-brain barrier as does Capecitabine (most treatments don’t) making this combo potentially very important.6 (Update: I tried this combo and did not tolerate it well and had to quit).

Clinical trials are underway in the US and France testing intrathecal application (directly into the spinal fluid) of trastuzumab (Herceptin) for HER2+ leptomeningeal metastases.7 Chat boards have anecdotal stories of success which provided the basis for these trials. A new drug Tucatinib (known as ONT-380 in clinical trials), has received limited FDA approval for the treatment of brain metastases from HER2+ breast as well as colorectal cancer.8

Our brain flushes toxins while we sleep.9,10 It does this using the ‘glymphatic system’ using glial cells to function like our lymphatic system to ‘take out the trash.’ This has implications for cancer in the brain as well as dementia and other CNS diseases and shows the importance of good old-fashioned sleep. Cannabis helps me get a good night’s sleep, as does melatonin.

    1. CNS metastases in breast cancer
    2. Metastatic behavior of breast cancer subtypes
    3. Biodistribution of 89Zr-trastuzumab and PET imaging of HER2-positive lesions in patients with metastatic breast cancer
    4. Neuro-Oncology Blood-Brain Barrier Program: Therapy
    5. Scientists Breach Blood-Brain Barrier To Deliver Cancer Drugs
    6. Neratinib Combo Seeking FDA Approval in HER2+ Metastatic Breast Cancer
    7. ClinicalTrials.gov identifiers NCT01373710 and NCT01325207
    8. FDA grants orphan drug designation to Tucatanib for brain metastases
    9. A paravascular pathway facilitates CSF flow through the brain parenchyma and the clearance of interstitial solutes, including amyloid β
    10. Sleep Drives Metabolite Clearance from the Adult Brain

Resources

• www.brainmetsbc.org

• Management of…brain metastases from breast cancer

• Updates on the Management of Breast Cancer Brain Metastases

 

 

 

This post is from Book 2 of my Thrive Tribe Series, What I Did and Do and Why, a naturopathic protocol that helps me to survive and thrive, available from the bookstore, starting at $7. The book is being posted sequentially in its entirety on this blog, once a week. Subscriptions are free.

Nothing contained on this website nor in my blogs or books should be construed as medical advice. I am not a doctor. I am a Stage IV metastatic breast cancer thriver who is currently NEAD and simply sharing my journey in the hopes it helps you to find your power and path. Please research anything I share to determine if it is a good choice for you. I believe in you! Bless you all on the path you choose.

All original content contained on this blog, What I did and do and why, is copyrighted 2015, 2016, 2017, 2018, 2019, 2020 Kaiulani Facciani, Snarling Wolf, Inc.