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Battling With Off-Label Medications – Cheryl Broyles' Journey

BATTLING WITH...OFF-LABEL (OR GENERIC) MEDICATIONS

Using “off label” medicines to fight cancer has begun to be used more often. Like using a chemotherapy drug made for one illness, but using it to treat another, even though it has not been FDA approved for that use. For example using a drug made for treating leukemia, but using it for brain cancer.

There are even many clinical trials beginning to research this approach. Years ago Ben A. William, a long term brain tumor survivor, wrote a book called “Surviving Terminal Cancer – clinical trials, drug cocktails, and other treatments your oncologist won’t tell you about” giving examples of off-label prescriptions that could be used to potentially fight the brain tumors. You can also read more about his suggestions at www.virtualtrials.com When I was diagnosed in 2000, reading his book motivated me to not only use some natural supplements to fight cancer, but also take some off-label medicines too.

Some off-labels used to fight brain tumors are “prescription” medicines. Prescribed for one illness, but used for another. There are currently many prescriptions out there being studies for off-label use. At this point in 2017 I have only taken two off-label prescriptions to help fight cancer. One is Metformin that I explained under “Affecting Metabolism” how I use the diabetic medicine to help lower my blood glucose, helping to starve off the cancer cells. In the past I have also taken Chloroquine, which I will describe under “Chloroquine”.

There are also some “over the counter” off-labeled medicines, that you can get at your local stores; again medicines that are made for one illness; but used to treat another. Currently I have two over the counter off-labels that I plan on using, but I’ve been so busy that they are still sitting on my kitchen counter waiting for me. Also, I do not want to start taking more than one “new” off-label, supplements, etc. at a time. One that I’m waiting to take is Reese’s Pinworm Medicine, a treatment for pinworms. The other is Tagamet, a treatment used for heartburn and Acid Indigestion. Each I’ve read some arguments at how they could be used to fight brain cancer.

What is great is that there are no risks or would not cause any damage by trying them. As I’ve said many places here on my web page, I think you want to keep the cancer cells confused and struggling to make it, by hitting the cancer from many angels, changing then over time, hoping to keep the cancer confused. The off-labels, over the counter or prescribed medicines are easy to do that with. In the past I have only used one “over the counter” off-labels, called SPC-Flakes. I will talk about it under “SPC-Flakes”.

One big challenge is finding a doctor that will be “Out of the Box” and willing to listen to you about getting prescribed and using an off-label medicine. Sometimes you need to more around between doctors until you find an open minded one willing to talk with you about it. I’m blessed to have a great local general doctor who is always willing to talk with me about considering off-labels, as long as I have some research and data to back it up. Usually if you keep searching, you can find some help.

Metformin

Lowering Glucose with Metformin

In 2013 After Reading the book “Cancer as a Metabolic Disease” by doctor Thomas N. Seyfried, I became very motivated to lower my blood glucose level. Cancer cells are well known for metabolizing glucose (blood sugar from carbohydrates). So eating sweets and simple carbohydrates is like feeding the cancer cells! My goal now is to lower my morning/fasting blood glucose level down into the 70s and lower 80s, and my 3 month average blood glucose level (the A1c blood test) less than 5. Lowering the blood glucose level is in hopes to minimize the grow of any cancer cells/tumor. There is much research and data what shows this theory is correct and can help fight cancer.
In January 2014 I began taking a diabetic prescription called Metformin to help lower my blood glucose. At this point I am taking 500mg with breakfast and dinner, a total of 1,000mg a day. The Metformin can have some bad side effects of gas and diarrhea, if you do not slowly rise the dose as your body gets used to it.

The Metformin effects your kidney, so it is my understanding that if you are going in for a CAT Scan, you need to go off the Metformin for that day (or more?), but I was told there is no conflict between the MRIs and Metformin, so it’s OK to stay in it while going in for an MRI.

Chloroquine

Over the years Chloroquine as come up many times in brain tumor support groups, and has been addressed by Ben Williams in the updates he provides on his book through www.virtualtrials.com So I read about chloroquine for years, trying to find any research that backed it up. I found some, kept thinking about it, and thinking about it, and then decided to try it.

I can’t provide the research I found that back up the theory that it can help fight brain cancer, it’s buried deep in the piles and piles I have gathered over the years, on anything that has to do with brains, brain tumors, and any treatment that is used to fight it. All I can share, it that I was convinced that it could be helpful. So I provided research and data to my general doc, and he prescribed me some.

This was back in 2015. I only stayed on the Chloroquine for maybe 6 months. First it was hard to find, at least the type of Chloroquine that I was looking for. There are two types of Chloroquine, and the research was showing that it was the Chloroquine PH that worked to fight cancer. I tracked some down, out of town, and started taking 500mg daily.

My mother had been on Chloroquine in the past, as it is used “off-label” for rheumatoid arthritis. She had an allergic reaction to the Chloroquine within just a few months of being on it. So I was hesitant of staying on it for too long. I figured I could stay on it for four months, just to startle and hopefully kill off some of any remaining cancer cells.

Of course, it’s impossible to say if taking the chloroquine for those few months really made any difference in me surviving the GBM brain tumor. But again, over the 16 years, I’ve continued to hit the cancer from many angels, changing treatments over time. I may decide to go back on the Chloroquine again in the future.

SPC-Flakes®

One visit to my neuro-oncologist at UCSF I asked him, “Is there anything I should try, to help fight the GBM”. My MRIs at that point looked nice and clear, but I wanted to keep it looking that way. At that time I was not on any chemo, just alternative things.

He suggested me to look into SPC-Flakes, that they at UCSF were actually beginning research on it, for being used to fight brain tumors. He spent at least 5 minutes telling me all about it and how it works to fight the brain tumors, but with my zero memory, I left not remembering anything. But I got home and looked up SPC-Flakes; I never expected to find special breakfast oatmeal. That sounded easy, I sure could eat some oatmeal; I love oatmeal. So I bought some.

I really started eating it without reading much about it. I like oatmeal and I truly trust my neuro oncologist. And it sure is a very easy way to fight cancer.

Here is some information I found on the internet where I went to buy the SPC-Flakes. It’s still hard for me to completely understand how it fights brain tumors. But I figured to include it hear, maybe it will made since to someone!

SPC Flakes induces the expression of a naturally occurring protein in the body called antisecretory factor. Antisecretory factor regulates the ion and fluid balance cross the cell membrane and even has anti-inflammatory properties. The product may be used for the dietary management of: Meniere’s disease

Inflammatory bowel diseases including Crohn’s disease, ulcerative colitis and diarrhea Mastitis

The product is dietary food for special medical purposes. For dietary management of patients with Meniere’s disease and inflammatory bowel diseases.

SPC-Flakes® are genetically modified foods classified as “food for special medical purpose”. Both products deal with a protein called Antisecretory factor (AF) which normalizes fluid and ion transport across cell membranes in the body’s cells. SPC-Flakes® is a specially produced oatmeal engineered to stimulate the body’s own production of protein AF.

Antisecretory factor (AF) is a protein secreted in plasma and other tissue fluids in mammals with proven antisecretory and anti-inflammatory activity; its immunohistological distribution suggests a role in the immune system. The expression level and the distribution of AF protein are altered during an immunological response.

AF is also claimed by the patent owner to be useful for: “…inducing improved rescue of injured or diseased nervous tissue, proliferation, apoptosis, differentiation and/or migration of an embryonic stem cell, adult stem cell, progenitor Cell and/or a cell derived from a stem cell or progenitor cell, for treating a condition characterized by or associated with loss and/or Gain of cells. In a preferred embodiment, the condition is a neurotrauma or a condition or disease of the CNS and/or PNS and/or ANS, for example, Alzheimer’s disease.”

 

Life's Mountains: What A Brain Tumor Survivor Learned

Learn more about my journey from my inspirational book!

Life’s Mountains climbs with Cheryl Broyles to the summit of California’s Mount Shasta and through the trial of “terminal” brain cancer. Told she had only a year to live, Cheryl did everything she could to stay alive. Four years later, still breathing, she and her husband Matt planned to climb Mount Shasta to celebrate her survivorship. Cheryl describes the similarity between climbing mountain trails and living through life’s trials. She gives hope for reaching each peak, seeing life anew and loving each day through the good and bad times.