Hi Friends and Family!
Thanks for your concern and support throughout this journey!
For those of you who are newcomers to my adventures, here's my abbreviated story:
On March 11, 2008, I was diagnosed with Ductal Carcinoma in Situ (DCIS), Stage 0. I opted out of the "standard of care," which included chemotherapy, radiation, surgery, and hormone suppression, and chose lifestyle and dietary changes (and college!) instead.
Seven and a half years later, on October 21, 2015, I was diagnosed with a recurrence, Moderately Differentiated Invasive Ductal Carcinoma, Stage IV. I have 2 lesions on the upper lobe of my left lung, one along my axillary tail (in my armpit), and one above my right clavicle, on a lymph node.
Again, I have opted for "alternative" (natural, non-toxic, effective) treatments over conventional therapy.
Because my cancer is PR+/ER+/HER2-, chemotherapy, radiation, and therapy have actually been eliminated from the roster, so I have hormone suppression in my back pocket as a last resort.
I don't have a prognosis, because I didn't want one. I know the statistics. And I know they're skewed. I know that my cancer is supposed to double every 60 days, and it hasn't. I know that most women with my cancer live, on average, for 1-3 years, after beginning treatment. I know that the average 5-year survival rate is 2%, and that the survival rate beyond 5 years is .02%.
I know that chemotherapy, radiation, and hormone therapy all cause cancer, while surgery spreads, or spills, cancer cells. I know that conventional cancer treatments shrink tumors and kill daughter cells, but leave stem cells untouched, allowing them to grow more aggressive, more calculating, and more prolific.
I know that quality of life trumps quantity of life for me, but that my daughter's milestones are paramount and I need to be here for prom, high school graduation, college graduation, job offers, marriage, babies, etc. So while I refuse to suffer needlessly at the hand of barbaric "medicine," I am willing to pull out all the stops and do whatever it takes - go wherever it takes - to ensure that I am around for another 60 years!
Long story short, I am pursuing an exhaustive list of alternative and holistic cancer treatments and therapies, after nearly a decade of research, capped off by approximately 5 hours/day of continued research since this last diagnosis, my own background in nutrition, and countless correspondences with experts, such as doctors, chemists, nurses, patients, survivors, naturopaths, researchers, and other scientists. My protocol is outlined below, along with my reasons for launching this particular fundraiser...
Today, I had a much-anticipated appointment with integrative MD, Dr. James Biddle, to discuss my case and his services, which include Hyperbaric Oxygen Therapy, Hormone Replacement Therapy, IV Vitamins (both C and D, as available), and Thermography. These are all treatments and procedures that I am familiar with through my research and have sought out intentionally. In modern medicine, these are considered CAM (complimentary and alternative medicine) treatments, and are usually administered alongside the standard of care to improve outcomes and ease symptoms. But for me, CAM is the only "M," and will have to stand alone.
To recap from my last update, my most recent appointment was with my oncologist on February 22, during which I was able to ask a series of 21 questions that I'd been compiling since my diagnosis. She answered most of them, mostly satisfactorily. But the take away from that last appointment was her parting statement: "If you were following a standard protocol, I'd tell you not to change anything." Meaning, whatever I was/am doing is working (at least to slow progression). According to my labs, scans, and pathology reports, my cancer hasn't changed at all since October 21. For those of you who have forgotten or have not been privy to this information, here is what I've been doing to treat my cancer (as new information becomes available, including how I feel with each treatment, and how well it seems to be working, my protocol is constantly tweaked):SUPPLEMENTS:
1. 95% THC (Cannabis Oil, 1g/day)
2. 65% AKBA (Boswellic Acid/Frankincense, 2 capsules/day)
3. Vitamin C (1000 mg, 2 capsules/day)
4. Vitamin D (2500 ICU, 2 capsules/day))
5. Turmeric with Bioperine (black pepper, for bioavailability, 2 capsules/day)
6. Broad Spectrum Digestive Enzyme (4 capsules/day)
7. Multi-Species Probiotic (1 capsule/day)
8. Vegan Omega-3 (4 capsules/day)
9. DDR Prime from doTERRA Essential Oils (an oral oil blend for cell support, 2 capsules/day)
10. Alpha-CRS from doTERRA Essential Oils (an oral oil blend for immune support, 2 capsules/day)
11. Vitamin B12 (1000 mcg, once a week)
12. Breast Friend Essential Oil Blend from doTERRA Essential Oils (homemade: Frankincense, Lavender, Clove, Sandalwood, Lemon, Lemongrass, Tangerine, Oregano, Thyme, Rosemary, Ginger)FOOD:
3. Added Oil/Fat-Free
8. Whole Foods (as opposed to pre-packaged/processed foods, not the grocery store)
9. No Refined Carbohydrates or Starchy Fruits/Vegetables (including potatoes, bananas, and plantains, except when in Costa Rica!)
10. No arginine (found in oats, peas, peanuts, and other foods)
11. Turkey Tail, Reishi, Maitake, and Shiitake Mushroom Extract
12. Green and Herbal Teas (mixed) at bedtimeLIFESTYLE:
1. Essential Oil Diffuser (using the Breast Friend blend)
2. Topical Essential Oils (Breast Friend on tumors, neck, and bottoms of feet, as well as a drop under the tongue and on the roof of the mouth)
3. Before my neck/back injury: moderate exercise, including yoga, dance, walking/hiking, and lower body-weight training (will get back into this next week, as my back FINALLY feels better)
4. Increased Sleep from 4/5 hours to 7/8 hours (this lasted 2 months, but I'm trying to get back on track)
5. Oxygen Purifying Machine (stopped using in January, due to bright light and terrible noise while sleeping...or not)
6. Start each morning with an 8 oz. glass of room temp lemon-ginger water (essential oils work great for this, too, for more potency)
7. Acupuncture (bi-weekly)
8. Massage (as needed)
We discussed this protocol in depth today, and he was pleased with it, overall. He said the very first thing he would have recommended is RSO (Rick Simpson Oil, or THC oil). He also recommends a low-fat, no-sugar, plant-based diet, but allows for eggs and fish for his omnivorous patients. And, of course, no alcohol.
Before I continue, I want to be very clear. Dr. Biddle is NOT an oncologist or a specialist of any kind. He is a internist, or general practitioner/family doctor, turned Integrative Doctor, out of need/demand. He wanted to make that point, repeatedly, undoubtedly for liability sake. We mused at how, in order to practice nutrition in NC, you have to be an RD or Nutritionist, but that they are fed all the dangerous propaganda that perpetuates disease, by encouraging the standard american diet, loaded with fat, sugar, salt, protein, refined carbohydrates, and chemicals. But, if you are a nutrition professional or expert, who is not registered, and you attempt to recommend a plant-based (or any other) diet to a patient or client, you can lose your job, your license, and/or your liberty. So he said he can make basic dietary recommendations, but can't tell me what to eat and what not to eat, specifically. He also told me he's absolutely sure that I know more than him on the matter, already, and that I probably also know more about breast cancer, research, and treatments. This man, because he has chosen to practice "alternative" medicine, has battled the medical board on 6 separate occasions and has, fortunately, come out on top so far. It's a very frustrating thing, trying to heal, in this current paradigm.
So that's what he's not.
But here's what he is: A graduate of the University of Missouri-Columbia in 1989, Dr. Biddle completed his residency in Internal Medicine in Portland, Oregon, in 1992. Dr. Biddle is Board Certified in Internal Medicine and also certified in Chelation Therapy, Hypnotherapy, Massage, and Reiki. His passion is combing the best of conventional and cutting-edge medical care. He has special interests in clinical nutrition, hormones, toxic heavy metals, and hyperbaric oxygen treatments.
He's simply a doctor who runs a facility that happens to contain the equipment and therapies I've been seeking, who is also willing to administer them, so long as there is no claim (or expectation) that they will "cure cancer." And I don't have any such expectation. These therapies that I'm pursuing are truly complementary to what I'm already doing, but I also feel that they are paramount. I don't believe they would work alone, but I also don't believe that what I'm currently doing is enough. My primary interests are HBOT, Vitamin C, Hormone Balancing, and Thermography. And here's why...Hyperbaric Oxygen Therapy
has been ineffective when used alone, but when used in conjunction with a ketogenic diet, the effects on cancer are astounding. Here is an excerpt from a published article from NCBI, with the accompanying link, if you're interested:
"KD (ketogenic diet)
alone significantly decreased blood glucose, slowed tumor growth, and increased mean survival time by 56.7% in mice with systemic metastatic cancer. While HBO2T (Hyperbaric Oxygen Therapy) alone did not influence cancer progression, combining the KD with HBO2T elicited a significant decrease in blood glucose, tumor growth rate, and 77.9% increase in mean survival time compared to controls." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3673985/ IV Vitamin C
brings blood levels of C up significantly farther than oral Vitamin C, and the results are dose-responsive. This allows for a "therapeutic" level of Vitamin C to enter the bloodstream. Data has shown that ascorbate selectively kills cancer cells (via apoptosis and pyknosis), but not normal cells, using concentrations that can only be achieved by IV administration. http://www.pnas.org/cgi/doi/10.1073/pnas.0506390102 Thermography
is a safer "alternative" to mammography. Thermography uses heat to detect cellular changes in the body, and is superior to mammography at detecting fast-growing tumors, while inferior at detecting slow-growing tumors. Dr. Biddle recommends thermography annually, and mammography every 3-5 years, depending on age and risk. Another advantage to thermography is that it utilizes a full-body scan.
And lastly, hormones, and this can get confusing, so bear with me.
As you'll recall, my oncologist(s) recommended "hormone therapy" as a primary cancer treatment, along with chemotherapy and radiation. That's the standard of care for (hormone receptor positive) breast cancer. This is a synthetic pharmaceutical designed to halt estrogen production, with the intention of "starving" the cancer. While this sounds promising, it's still a relatively aggressive treatment, in terms of physiological collateral and side effects. Essentially, it launches a patient into menopause, at an alarming speed, and then you just linger there - mood swings, hot flashes, night sweats, weight gain, body hair, balding, bone density loss, heart problems - indefinitely. It also doesn't "cure" cancer, but only hopes to slow tumor growth and proliferation. This is not that.Hormone Replacement Therapy
(HRT) is what middle-aged women do when they begin menopause naturally, to replace their estrogen (which is a necessary hormone in the body for metabolic function, reproductive function, blood health, organ function, etc). It's also what people - men and women of any age - do when they have a hormonal imbalance. And so many of us do!
I was alerted to mine when I was 27 and attempting to get a birth control prescription from my OB/GYN, who told me I didn't need it, because I had PCOS (polycystic ovary syndrome) and would likely never get pregnant naturally, but would require fertility treatments, IVF, and/or surrogacy, plus time, money, and pain (one month later, on birth control, I was pregnant, naturally).
I have a list of twenty one (21) symptoms that indicate hormonal imbalance, not to mention, um, breast cancer, which is pretty solidly linked to hormonal imbalances. I won't go into that list here; if you're curious, let me know and I will expound. But all that is to say that my symptoms point to the following:
1) Estrogen deficiency AND estrogen dominance. How? Even though I don't produce enough estrogen, I have more estrogen than any other hormone, allowing it to run wild and wreak havoc.
2) Progesterone deficiency. Progesterone is the female hormone that regulates estrogen. It helps increase production if you're low, and decrease it if you're high, and tells it where to go and where not to go.
3) Androgen overproduction. Androgen is a male hormone that females also have in smaller concentrations. Most of my symptoms correspond to this imbalance, which, on the surface, may seem irrelevant, but here's why it's not: Androgens are stored in fat cells and converted, by those cells, into estrogens.
So we have this magical trifecta happening: I'm over-producing androgens, which are converting to estrogens. So, even though I'm not really making enough estrogen naturally, my body is finding a way to produce it. But I don't have enough progesterone to regulate it, so it's like an estrogen free-for-all, initiating, promoting, and progressing cancer cell growth.
This is why I'm interested in hormone replacement therapy. Knowing that I actually need estrogen to function optimally, and that I'm not producing enough of it, and that what I am producing isn't being regulated, I have no desire to actively stop all estrogen production in my body. Not at 37. It's not natural. And it's probably the real root of the problem. It's probably the "internal environment" that was so primed to entertain the external triggers (dairy, TCE, stress, cigarette smoke, etc) that led to my cancer development. I want to address the foundation first. And I believe this is it. What I'd like to explore, therefore, is the option of reducing androgen production, increasing progesterone levels, and letting the estrogen fall into place after that.
All of this is very exciting and promising, but here's the clincher: health insurance companies don't cover integrative medicine (as chance would have it, they do offer a discount to medicaid recipients), so anything I do will be an out-of-pocket expense. And he was kind enough to break that down for me today. Here is what the individualized protocol would look like, and what it would cost:
1) Five Office Visits (over the course of 6 months)
2) Initial Case Evaluation
3) Education Curriculum, including Sustainable Nutrition, Shopping and Cooking, Exercise, Detoxification, Hormones, and Stress Management
4) Private Coaching with Nurse Practitioners
5) All Labs and Tests
6) All Supplements
7) Administrative Fees
The labs he'd like to order include:
1) Initial Blood Lab Panel
2) Repeat Blood Labs
3) Hair Analysis
4) Female Hormone Profile
5) Functional Intracellular Analysis 5000
6) 6-hour Urine Toxins
It would also include use of the Far Infrared Sauna (uses a section of the natural band of light that is not visible to the human eye, but can be felt as heat, in combatting toxic overload, detoxing heavy metals, pain relief, stimulating the immune system, managing stress, easing anxiety and depression, plus a host of other benefits that don't necessarily apply to my situation), as well as the rebounder (trampoline).
The total cost of this program is $5828. Yes, you read that right. It's exactly 1/5 of what one month of chemo would have cost (which would be needed for a minimum of 6 months)...except the insurance company would have paid for that one. And there are three payment options:
1) Paid in full, with cash, for a 5% discount: $5536.60
2) Paid in full, with a credit card for a 3% discount: $5653.16
3) 50% Paid up front ($2914), with 25% paid the following month, and 25% paid the 3rd month
This is not an impossible amount of money to come up with, except that we've already gone through so much, and continue to, just maintaining my daily protocol and our household/living expenses, without me working.
I have 2 weeks to make my decision, before he shelves my file and takes on another patient (he only takes 20 new ones a month, so he can give individualized attention - no waiting room, no exam rooms, no physician's assistants, just me and the doctor for 90 minutes, each time). That doesn't eliminate me from his potential roster, but it does put me back on the waiting list, and they are scheduling for the end of July currently.
In the meantime, Dr. Biddle did offer some changes and additions to my current protocol:
1) Increase Vitamin C to 6000 mg/day (bowel tolerance)
2) Increase Digestive Enzymes to 5 capsules, 5x/day (including the middle of the night, to ensure an empty stomach)
3) Increase Turmeric to 6 capsules/day
4) Add daily 81 mg aspirin, 3-5x/week (this has been shown to decrease the risk of METS by 60%)
5) Adequate Sleep (minimum of 6 hours/night decreases risk of METS by 62%)
6) Add CoQ-10
7) Add Melatonin
8) Add Green Tea Extract
9) Add Beta Glucan
I was in the process of adding sleep, melatonin, green tea extract, and beta glucan, already.
This appointment was beneficial beyond what he has to offer, but in streamlining my self-made protocol to be more effective, whereas I was just guessing on dosages prior, based on my own research.
PLEASE SEED UPDATES
Thank you all, again, for your love, support, encouragement, and generosity. I can't even begin to articulate how much it has meant to me and my family, how much it has helped, and how humbled I am.
Love to you all,
Julie, Anoop, Emma (and Raisin)