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– My brain metastases

In October 2012 I lost the use of my legs and one arm and tumors were discovered in my lungs, liver, and lymph, all throughout my spine and pelvis, and I was given less than 2 months to live. I employed both naturopathic and western medicine and one year later, I was walking, felt great, felt like had won and that I was going to live forever. Then they discovered 9 brain tumors/metastases. Worse, it was leptomeningeal carcinomatosis, meaning that the protective tissues surrounding the brain (blood-brain barrier) were involved. Because it usually spreads rapidly, median survival is 4-6 weeks if untreated, and 2-3 months if treated. I had just lost a mets sister a month after her diagnosis of leptomets. 3 weeks later, 4 of the 9 brain tumors were gone without a trace. I have been NED (no evidence of disease) since May of 2014… a miracle of sorts. Truthfully, if you have brain mets, I don’t know what you should do. But I am asked frequently what I did and why so I share my path here in the hopes that is helpful to you.

Western medicine options:

Most chemotherapies don’t cross the blood-brain-barrier and western medicine treatments were limited. I am Her2+ and Herceptin and Perjeta seemed to be working well in my body but they are large molecules and do not cross. Tykerb (Lapatinib) and Xeloda (Capecitabine) 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 maybe buy some time. It gave me a painful shingles-like rash reaction with pus-filled sores all over my hands and feet.. They offered whole brain radiation (WBR). I know that many people have had it and 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 Nest” material and declined. Because I had 9 tumors of varying sizes and varying locations, targeted radiation was not an option for me.

Naturopathic options:

I do not judge another’s path… we all have to make our decisions based on what we feel is appropriate for us. Let’s just say I was underwhelmed by the options that western medicine presented me. And, damn it, I wasn’t done fighting yet! I employed 3 naturopathic options that I feel made the difference and were the primary reason for the 4 tumors disappearing. I do not know if it was just one, all three, or a combination. The only way to know for sure is to employ the scientific method but since that would involve my death in certain scenarios, you’ll just have to settle for my anecdotal history. Included are links to previous posts that contain much more information on these methods. Please click and read to get the whole story.

Cannabis and Cancer

I had been taking Cannabis oil with a high CBD:THC ratio since I don’t like to be high. I read that it crosses the blood-brain-barrier and kills cancer so I quadrupled my dosage. I was previously taking 1 dropperful per day and I started taking 4. I now take an oil with higher THC in it right before bed so the high doesn’t bother me. Please read my series on Cannabis and Cancer to learn more about how this wonderful herb kills cancer.

Root canal removal

I had heard of the 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 could be 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.

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.

Back to western medicine:

So 6 weeks after diagnosis, three weeks after employing these methods, a brain MRI showed that 4 of the metastases/tumors, including the largest one near my tooth, had disappeared without a trace. The doctors were incredulous and conceded that it was extremely unlikely that the one dose of Methotrexate and the few doses of Tykerb could have accomplished it. In fact, they were convinced that I must have been misdiagnosed. It was possible that something was hinky with my scans because they were done in two different facilities. They decided to watch and wait for progression in the mets that were left. 3 months later, of the 5 remaining mets, 3 had remained stable but 2 had doubled in size. It was unclear whether there was, in fact, leptomeningeal involvement.

I stamped my feet and said, “Were there in fact 9 tumors and now there are only 4? Do I have leptomets or not?!” The uncertainty was driving me crazy so I insisted on an independent evaluation of all scans by a third radiologist. Yes, I had 9 and now I only had 4 and no one had an explanation. And yes, there was leptomeningeal involvement. Whatever had gotten rid of 4 was no longer working reliably on the remaining 5. The mets were still very small, but this was progression and you don’t want to ignore progression in leptomets. The fact that I had progression and that I now only had 5 and they were right next to each other, I was a candidate for stereotactic radio surgery (SRS), or targeted radiation.

With SRS, they take a 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. Where the vectors intersect is where the tumors are and they 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. I had 5 SRS “surgeries” in May of 2014.

Current status:

My follow-up MRIs 9/14 and 1/15 showed me to be NED (no evidence of disease). June 2015, my brain MRI 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 that the radiation oncologist who did the SRS had 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. I was now in yet another state with yet another set of doctors but 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 like the cancer was back and I REALLY didn’t want to give up my NED status and so I stubbornly pushed on and went to a new RO in my state. He looked at the scans and said, “By Jove, 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 wasn’t definitive but supported the notion of scar tissue. An MRI in September, 2015 showed the mass getting smaller, supporting the scar tissue theory. I get my 6-month MRI in just a couple of days from now. I’m counting on you all to support the potential reality of continued NED for me. Thank you!

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 intrathecal (inserted directly into my spinal fluid) Methotrexate that caused the same toxic reaction AFTER the 4 tumors disappeared and I had progression after that. I think removing my infected root canal tooth solved the problem of local immune suppression so that my immune system could work with the cannabis oil to get rid of the tumor next to the tooth. I think that CO 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 located in a place that was difficult to reach or affect. It’s clear that the SRS, at least temporarily, 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…. hahahaa.

So I once again come to the conclusion that one should evaluate the effectiveness and toxicity of western medicine options and absolutely research naturopathic options to keep your body healthy when choosing your path. Me, I wouldn’t have done anything different. I have learned to trust my higher healing self to guide me in the decisions I make. If nothing else, I have learned that my innate stubbornness and belief in myself have served me well. The most important thing you can do, in my opinion, is to take control of your healing and believe in yourself. Do your research and meditate on your options… no one will ever care as much about your survival as you do and YOU ultimately know the best way for you to heal.

Promising New Technologies for Her 2+ brain mets:

It is possible to get chemo put directly into your Cerebrospinal Fluid (CSF) or, intrathecally, through an Omaya port. The FDA has not approved it and so it is off-label use and not every doctor or hospital will agree to do it. I have seen, on the chat boards, great success stories with this. However, I just lost a dear friend who tried it. I do not know what she died of eventually, it could have been metastases elsewhere. But it is something to talk to your oncologist about if brain metastases seem to be getting the upper hand.

Also, there is this drug they are having success with in trials, ONT-380. Most of the trials are currently closed, but they are actively recruiting patients for this clinical trial using it in conjunction with Xeloda and Herceptin.

 

Disclaimer: Nothing contained on this website should be construed as medical advice. I am not a doctor. I am a Stage IV breast cancer thriver who is currently NED/NAD and simply sharing what I did, and do, and why. Please research anything I share to determine if it is a good path for you. Bless you all on the path you choose.

All original content contained on this web site, What I did and do and why, is copyrighted, 2015,2016 Kaiulani Facciani.

 

Comments

comments

1 comment

  1. Gena Hart

    Great info. Thanks for sharing. I have bc with bone metastases. 12 months later progression to lm. No brain mets or tumors just in the meningeal fluid. I did 4 weeks of full brain and spinal fluid radiation.
    lots of side effects but overall cancer makers halved. That was august 2016. Yes it was very star wars with the plastic mask and radiation beams zapping me all over!
    Markers started to increase 5 months post radiation. Headaches came back with a vengeance. 2 more lumbar punctures and the lm was causing massive pressure increase in the fluid. This also caused sciatica pain in legs arms shoulder and back. I am in hospital now ready to see the neurosurgeon in the morning. I may have a shunt poor in to reduce pressure and ibrance to control the spread of the cancer and it shows the ability to pent rate the brain fluid barrier.
    I was ona special trial for brcaa patients until the pressure increases. I was going great after the radiation for 5 months. I am also a woman of great faith and all my direction is from prayer and God’s word. I would not have got this far without it.
    Sending gods love and prayers for you all. Gena

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