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Old 01-09-2016, 11:39 AM   #1
agness
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Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Post Other things you can do when dealing with brain mets

Hi,

I don't know if treatment is going to work or not for me and my brain mets but we know that the standard of care isn't in our favor.

I have been researching other approaches to treating brain tumors, both primary and secondary (mets) for over a year and I have assembled a list of other therapies that can be employed outside of the standard of care (which doesn't really work) to help enhance patient response to treatment and can possibly improve survival.

I will provide documentation and links when I can, some of them only from animal studies. In other cases I am making intelligent leaps and there is logic behind the approach but it will be outside the bounds of what I have seen documented scientifically. In most cases there won't be clinical trials so these will all be at the patient's risk to try or not.

Since the standard of care is so unsophisticated and basically hasn't shifted much in the past 30+ years we patients should at least see what else we can do to try to shift the needle in our favor.

-Ann
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 01-09-2016, 11:45 AM   #2
agness
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Posts: 285
Re: Other things you can do when dealing with brain mets

Budwig protocol

Based on the theory by a woman with a doctorate in physics, natural medicine, as well as a chemist and pharmacologist, the protocol uses a sulphur-based compound to help transport fats containing pi-electrons into cells through the cell barrier membranes.

This is a great link that goes into the basics of this:

http://www.mykidhascancer.com/yes-what-you-eat-can-cause-cancer-and-how-the-budwig-diet-can-reverse-it.html

Working with a medical empath I have learned that my body prefers whole milk Organic Valley cottage cheese. Other brands that are low-fat or fermented with live strains of bacteria are less helpful to my body. Just putting that out there as it is useful information.
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Old 01-09-2016, 11:53 AM   #3
agness
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Re: Other things you can do when dealing with brain mets

Vitamin C IV Infusions

Using IV infusions with a qualified and trained practitioner, one is able to get vitamin C levels to be much higher in the body than can happen via oral methods. IV vitamin C must be done slowly in order that it doesn't result in clumping, and a individual tolerance must be established before a higher dosage can be used. They also need to do a blood test first to see if you are unable to take vitamin C in this manner, an issue for those of Mediterranean descent who have the fava bean allergy I believe.

The cerebellum uses a lot of vitamin C in both its development and how it operates normally.

If one is on a ketogenic diet it improves what they can do, including expanding options to drive Vitamin C into cells using hyperbaric treatment (HBOT).

Studies have shown that vitamin C can increase protection of healthy cells and increase apoptosis in cancerous cells. It is possible that given an hour before radiation treatment that this can be enhanced when giving rads to brain mets.

Vitamin C is important in the body in tissue healing including connective tissue formation.

IV Vitamin C Kills Cancer Cells
http://www.drwhitaker.com/iv-vitamin...-cancer-cells/

High-Dose Vitamin C (PDQ)
http://www.cancer.gov/about-cancer/t.../vitamin-c-pdq

Vitamin C may enhance radiation therapy for aggressive brain tumours
http://www.otago.ac.nz/news/news/otago030348.html

Vitamin C protects rat cerebellum and encephalon from oxidative stress following exposure to radiofrequency wave generated by a BTS antenna model. - PubMed - NCBI
http://www.ncbi.nlm.nih.gov/m/pubmed/24730455/

Last edited by agness; 01-09-2016 at 05:42 PM.. Reason: adding links
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Old 01-09-2016, 05:54 PM   #4
agness
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Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Other things you can do when dealing with brain mets

Melatonin

My Medical Qigong teacher and Traditional Chinese Medicine doc says the best melatonin is what comes from the body itself, that exogenous supplementation isn't as good. We see greying hair when there isn't enough.

It turns out that there are two special melatonin receptors in the cerebellum.

I am taking 1-2 orally soluble tabs a night of melatonin. My sleep hasn't been as good since the start of December but the ketogenic diet is known to interfere with sleep. I try to take it in stride and get as much as possible besides that, even if it is in batches of 3-4 hours.

Preventing and Counteracting Adverse Effects of Radiotherapy
Melatonin reduces oxidative damage from the production of free radicals (Reiter RJ 2004). Several studies indicate that melatonin functions as a radioprotector (Karbownik M et al. 2000), reducing the toxic effects of radiation on mammalian cells (Vijayalaxmi et al. 2004)
http://www.lifeextension.com/protoco...herapy/page-07

Melatonin receptor subtype expression in human cerebellum.
http://www.ncbi.nlm.nih.gov/m/pubmed/9926848/

8 Foods to Naturally Increase Melatonin for Better Sleep
http://naturalsociety.com/8-foods-na...latonin-sleep/

The contribution of circadian rhythms to cancer formation and mortality
http://atlasgeneticsoncology.org/Dee...tsID20124.html

The Pineal Gland and Melatonin
http://www.vivo.colostate.edu/hbooks...do/pineal.html
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 01-10-2016, 09:08 AM   #5
agness
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Location: Seattle, WA
Posts: 285
Re: Other things you can do when dealing with brain mets

Lower Your Blood and Spinal Fluid Glucose Levels (Ketogenic Diet)

Read my ketosis thread here: http://www.her2support.org/vbulletin...ad.php?t=64279

I am doing this through a ketogenic diet, and I believe that it is even more appropriate when dealing with brain mets. While being in ketosis is often as described as "starvation mode" it is a normal metabolic state for our bodies that we pass through, typically during the overnight period. What isn't normal is the high levels of glucose readily available in our diets that cause us to have glucose dysregulation, insulin resistance, and inflammation throughout our bodies.

What is interesting to me is that there are certain parallels that I have observed with this diet:

1) it is nutrient-dense and that has been a key tenet of my Chinese Medicine treatment from the beginning.

2) it matches up with anti-HER2 diet recommendations

3) it is low in potassium -- the key secondary action of taxanes, the first drugs that started really working against breast cancer, is hypokalemia -- low potassium. People have successfully committed suicide by consuming yew berries.

History of Taxols (Paclitaxol)
http://www.paclitaxel.org/background.html


The brain is normally glucose-rich, it is the normal state of the organ system. However it is easily adapted to using ketones as a fuel source. HER2 has an affinity for the brain and yet patients have observed that their HER2 brain met progression has halted when they switched their diets to keto. It isn't the be all and end all but it adds a layer to treatment that only you the patient can bring.

Each Organ Has a Unique Metabolic Profile
http://www.ncbi.nlm.nih.gov/books/NBK22436/

And, evidently, when one is in ketosis it increases the options and efficacy of hyperbaric oxygen therapy (HBOT) and can help drive IV vitamin C down deeper into the tissues.

The Ketogenic Diet and Hyperbaric Oxygen Therapy Prolong Survival in Mice with Systemic Metastatic Cancer
http://journals.plos.org/plosone/art...l.pone.0065522

Cancer Treatments: Is a Ketogenic Diet Better?
http://www.ketogenic-diet-resource.c...reatments.html

I'm not saying to do nothing else, I am saying do more.
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Old 01-10-2016, 09:58 AM   #6
agness
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Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Other things you can do when dealing with brain mets

Cannabis

There are specialized cannabinoid receptors in the brain, I learned about them when I was looking into ways to support my body through two painful miscarriages. I've always been straight edge, I find drugs to be dys-euphoric, but this was interesting -- plus I've got a rebellious spirit (can you tell).

After consulting with knowledgeable friends I learned over the past 8 months that high CBD levels are good for the brain and that using a vaporizing device is the best delivery method.

But, for the cancer-fighting properties you also need to have THC in there, and cannabidoil works best when small quantities are taken frequently.

There is this caveat, that cannabis can cause parasthesia which can be really freaky for the brain mets patient. If you are feeling numbness in your extremities then you need to adjust your dosage down. It should go away once you lower your dosage. You might already have parasthesia from chemo in which case this won't bug you at all.


About Cannabis

Harry’s World: The Science Of CBDs
http://www.hightimes.com/read/harry%...d-science-cbds

There Are Now 100 Scientific Studies That Prove Cannabis Cures Cancer - Higher Perspective
http://www.higherperspectives.com/th...429984852.html

Topical Uses for Cannabis sativa L.
https://www.planetherbs.com/specific...-sativa-l.html

Cannabis for wounds and injuries -- it is specifically noted to help improve healing in epithelial tissues
http://sensiseeds.com/en/blog/cannab...-and-injuries/

Cannabinoids are active in the body early in pregnancy -- just like HER2 is (yes, you heard it here, perhaps first)
http://www.ncbi.nlm.nih.gov/pubmed/26229240

Products

My friend gave me this and said it didn't do anything for her. I took a dropperful like it said on NYE -- I started hallucinating that afternoon. I don't know about my friend but this stuff is potent and it does contain both CBD and THC
http://fairwindsmanufacturing.com/in...p/sky-tincture

CandyPens - Galaxy -- what I got but I have to buy oil still
http://kandypens.com/


Dosing Links
This one isn't great but it is really personal in what your dosage should be
https://www.projectcbd.org/cannabis-dosing


Vaporizer Links
http://www.vapecritic.com/
http://www.leafscience.com/2014/09/0...s-need-invest/

PS - I live in Seattle so this is all totally easy to access here, nothing illegal about it.
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Old 01-13-2016, 07:43 AM   #7
agness
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Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Other things you can do when dealing with brain mets

Medicinal Mushrooms

I learned from my naturopathic oncologist that tinctures are stronger than the capsules with powdered product. I was taking Turkey Tail mushrooms which is supposed to be good for the immune system, it even says so in my mushroom book.

The current study group at UW Tumor Vaccine Group involves looking at the anti-HER2 peptide given in tandem with PSK (krestin), isolated from turkey tail mushrooms. Studies at Bastyr University (also in the Seattle area) have shown that PSK given with Herceptin has greater anti-HER2 efficacy.

TLR2 agonist PSK activates human NK cells and enhances the anti-tumor effect of HER2-targeted monoclonal antibody therapy
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3206987/

I saw a medical intuitive last week, she didn't know about these things, nor that they are studying them with HER2, she also doesn't sell supplements -- in fact I was just there because she is skilled in lymphatic massage and my left inner forearm is congested and she was also giving me a craniosacral massage to deal with fall out from my craniotomy and SRS. She decided to go "there" with me and she said that my body was looking for mushrooms. She had a bottle of Stamets Immune Support and went down the list and let my body tell her what it wanted.

Chaga - can find as tea
Birch Polypore - especially++
Oregon Reishi
Zhu Lin. - to a lesser degree
Cordyceps - to a lesser degree
Turkey tail

She said my body was using the mushrooms to light up the cancer cells so it could see them, that it couldn't see the cancer otherwise. She said turkey tail might be 20% effective but it is additive with other mushrooms so it doesn't negate a different mushroom being 15% or 5% or whatnot -- it all helps. This makes sense to me but I have a high tolerance for what is considered "woo woo" by some.

I have looked through shops and what I have learned:

Turkey tail only fruits in the fall, has a white underneath and grows on wood. You can find instructions for steeping your own tea, which patients in a different forum were discussing.

Chagga and polypore both grow on decaying birch trees and you need it from birch specifically.

Chaga is available in natural shops as a tea, or it is probably readily available online

Other mushrooms can be found dried in Asian groceries, also fresh versions, but you may or may not find these medicinal mushrooms.

The Stamets Comprehensive Immune Support formula contains all the above and others. You take a dropperful twice daily which is the easiest to add to your regime.
http://www.hostdefense.com/mycommunity-extract

Last edited by agness; 01-13-2016 at 07:45 AM.. Reason: Adding content
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Old 01-13-2016, 09:56 AM   #8
Donna H
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Join Date: May 2014
Posts: 243
Re: Other things you can do when dealing with brain mets

Really interesting stuff. I hate the "standard of care" line medical teams use. Just because it is the gold standard doesn't mean it is right for me. It might be, but I want to explore all the options and gain as much knowledge as possible. I've never wanted to be standard - I prefer to strive for something more, whatever that may be. This journey is so tough - physically, emotionally, mentally.... Each of us need to find what works for us, with the help of our medical team and personal support team and the people on this site.
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Old 01-13-2016, 11:54 AM   #9
donocco
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Join Date: Oct 2013
Posts: 402
Re: Other things you can do when dealing with brain mets

Ageness

Ill tell you a personal story I had with Melatonin. My dog had a tumour. It was a spindle cell tumour. This is not malignant but its not benign either. It tends to regrow and can wrap itself around organs and can be hard to remove. In fact is usually regrows

I put the dog on melatonin at bedtime because of the antiicancer action I read it
has or might have. To make a long story short the tumour regrew and my attitude was
"At least I tried." However the second tumour was removed surgically and the pathological report showd absolutely no spindle cells. This is very unusual. Was it the melatonin? I cant say but the dog (an adorable springer spaniel) still gets his nightly Melatonin.

Look up copper reduction with Ammonium Tertrathiomolybdate. You might find the info interesting

Paul
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Old 01-14-2016, 04:55 AM   #10
agness
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Re: Other things you can do when dealing with brain mets

-- Boswellia Serreta --

This member of the frankincense family has been found to reduce cerebral edema without affecting blood glucose levels negatively (dexamethasone is promotive of cancer by causing blood sugar elevation, in the hospital they check your blood glucose and give insulin when patients are on high-dose Dexa). It's not to say that Dexa isnt a useful drug, in fact it saved my life last July from my HER2 brain tumor, but it does have some very serious side effects and should be used as little as possible.

Actually, my friend just had SRS to multiple HER2+ lesions and evidently down in San Francisco they aren't using Dexa any more. That sounds extreme to me, even as I don't much like the drug. I think if it helps in the short-term, especially if the patient is in ketosis, then short stints can be beneficial.

Another friend's wife had a primary brain tumor and he has been wonderful to share resources with me. This is where the recommendation for taking Boswellia Serreta came from. I talked to my naturopathic onc who agreed that a mix blend of herbs was best aand that I should be paying over $25 for good quality supplements. He wasn't clear on the dosing, the brain tumor folks are more accurate but you still need to find your baseline. He did say that you counts take Boswellia with Dexa -- which is pretty cool actually, when needed.

There is also reason to believe that Boswellia may have anti-tumor characteristics, including the ability to treat some brain mets depending on the mutation. Brain Mets gals have also noted that Boswellia Serreta, commonly taken to treat arthritis, can also treat joint pain from anti-hormone therapy such as with aromatase inhibitors.

From what I have seen, Boswellia isn't well known yet by radiation oncologists or neuro-oncologists. Some have a peripheral understanding of it but it is far from mainstream. Having a naturopathic onc has been very helpful in this regard, I can say I reviewed it with him -- which I do. I also have pre-arthritis in my shoulders from chemo. It doesn't hurt but was seen in bone scans. Taking Boswellia fir this condition seems reasonable.


http://www.treatingglioblastoma.com/...llic_acids.htm

https://en.wikipedia.org/wiki/Boswellia_serrata

Boswelia in breast cancer brain metastasis
http://www.rainbow.coop/library/lipo...in-metastases/

http://onlinelibrary.wiley.com/doi/1...ncr.25945/full

Boswelya Plus - I currently take 4 caplets a day
http://ayush.3dcartstores.com/BOS-WELYA-PLUS_p_265.html

Basic Dosing Info:
1000-3000 mg a day
half life of 6 hours
replaces or supplements dexmethasone
reduces brain swelling
not promoting of brain glycogen

Last edited by agness; 01-14-2016 at 04:59 AM.. Reason: Typo
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Old 01-25-2016, 12:06 PM   #11
agness
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Re: Other things you can do when dealing with brain mets

Soapberry (and Soursop)

Soapberry fruits and even soursop are both know for lowering blood glucose and have been associated with hypoglycemic conditions on the body in malnourished individuals or those who eat too much. There is a place though for these fruits to help reduce brain blood glucose in a state of ketosis -- it just hasn't been studied yet from what I can see. There is a secondary action there which also can aid the body in fighting brain tumors but the amount needed needs to be established, what is termed "encephalitis" in other quantities I believe could help and be beneficial to the brain. This is all in addition to standard oncology treatments of course.


Here are some links to check out:

Lychee is a member of the soapberry (sapindaceae) family. This page has lots of examples if you look under notable species.
https://en.m.wikipedia.org/wiki/Sapindaceae
https://en.m.wikipedia.org/wiki/Lychee


Soursop also lowers glucose through a similar action:
https://www.mskcc.org/cancer-care/in...herbs/graviola


They have identified that members of the soapberry family are associated with illness when taken in large quantities:
https://www.chinaabout.net/be-careful-of-litchi-disease-no-more-than-300g-of-litchi-per-day/
http://wwwnc.cdc.gov/eid/article/21/5/14-1650_article
http://www.ncbi.nlm.nih.gov/pubmed/25632950
https://en.m.wikipedia.org/wiki/Ackee-- look under toxicity

They have isolated some of the active elements in lychee including methylenecyclopropylglycine and hypoglycin A.

Quantification of metabolites for assessing human exposure to soapberry toxins hypoglycin A and methylenecyclopropylglycine
http://www.ncbi.nlm.nih.gov/pubmed/26328472
Mechanism of hypoglycaemic action of methylenecyclopropylglycine
http://www.ncbi.nlm.nih.gov/pubmed/2730593


I stumbled across these by accident in this context of lowering brain glucose levels and I'm using them myself judiciously. From what I can tell they haven't thought of this connection.
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.

Last edited by agness; 01-25-2016 at 12:06 PM.. Reason: spacing
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Old 01-28-2016, 09:23 PM   #12
agness
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Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Other things you can do when dealing with brain mets

Citrus oil and zest

Use foods and oils to help enhance your body's ability to deal with brain cancer, possibly enhance radiation effects on cancer cells and help your body heal.


There is actually evidence and it has been studied, d-limonene is the volatile oil found in citrus peel and it has some interesting anti-cancer properties.

Human breast tissue disposition and bioactivity of limonene in women with early-stage breast cancer.
http://www.ncbi.nlm.nih.gov/m/pubmed...20oil%20cancer

It also looks like limonene helps induce apoptosis and works to inhibit PARP
http://www.ncbi.nlm.nih.gov/m/pubmed/23117412/

PARP-inhibitors are one drug research pathway that has been studied for HER2

HER2 overexpression renders human breast cancers sensitive to PARP inhibition independently of any defect in homologous recombination DNA repair
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3458582/



There are also citrus flavanoids that appear to have anti-cancer properties:

Anticancer Activities of Citrus Peel Polymethoxyflavones Related to Angiogenesis and Others
http://www.hindawi.com/journals/bmri/2014/453972/

"One of the most basic features of cancer cells is their ability to proliferate chronically. Apart from blocking cell cycle, flavonoids in citrus peel can also inhibit cell proliferation and promote apoptosis, especially in triple-negative (ER-/PR-/HER2-) breast cancer (TNBC)."




An interesting thing that isn't discussed is that our noses, our olfactory sense, crosses the blood brain barrier. Researchers have looked into alternate means to deliver chemotherapy agents into the CNS including via the nose.

Strategies for Enhanced Drug Delivery to the Central Nervous System
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2792490/



Citrus Zest
Grate citrus zest into food or water, don't heat it. Grapefruit zest is strongest but lemon is good too, probably certain orange zest also. I get the sense that mandarins have less but maybe that is me.


Essential Oils

Use citrus essential oils in a carrier oil or add onto a diffusion device. Use different types and brands to find ones that work for you or have different properties.

Note that straight citrus oil can cause skin reactions and can increase chemical sensitivities. Be judicious.

Terpene Profile: Limonene
http://theleafonline.com/c/science/2...file-limonene/


Lava Bead Bracelets
https://www.etsy.com/search?q=lava%2...oil%20bracelet
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