Tuesday, April 17, 2012

My Mother's Experience with Low Dose Nalrexone and Her Glioblastoma IV Brain Cancer

Hopefully the final draft. This is for a UK publication on LDN. I am not a writer!!!


I was diagnosed with a stage four glioblastoma [brain cancer] in February of last year [2011]. After a full course of chemo and radiation, in mid November, I learned about an inexpensive prescription medication, low dose naltrexone. Prior to starting this medication, I was deteriorating. I required a walker and could go only short distances. I had significant memory loss. With all the standard treatment, I was given 10 months to live. The average prediction is 14 months, even after excision, 3.2 cm of tumor remained. After I learned about and obtained a script for low dose naltrexone I gradually regained my ability to walk normally, without a walker, my thinking became clearer. In short, I regained function.

— Laura Arasmo, RN

On the morning of Saturday, 12 February, 2011, my mother, an RN, was working on her nursing notes when she briefly lost consciousness and became disoriented. She dialed 911.

The surgeon excised what he could of a 5.4 cm tumor on Monday, 14 February. Her diagnosis was a grade four Glioblastoma brain tumor (GBM). This is a very aggressive type of brain cancer.

The standard treatment for a GBM involves waiting four to six weeks after surgery and then taking the oral chemo drug, Temodar (temozolomide), for 42 days while undergoing radiation, five days a week for six weeks. Temodar is continued five days a month for six months.

According to the study “MGMT Gene Silencing and Benefit from Temozolomide in Glioblastoma” published in the New England Journal of Medicine, about 45% of the 206 patients benefited by using Temodar. It extends life for about five extra months if you have a heritable trait called “silencing of the MGMT/AGT gene”. The median survival is 14 months.

John, our Chinese Medicine practitioner (M.Ac., L.Ac.), is very familiar with GBMs. He urgently wanted my mother to get the MGMT test done on a biopsy of her tumor. I pulled out all the stops to make it happen, despite objections from my mother’s oncologist, who said that Temodar was her only option for treatment at this stage — regardless of whether or not she would benefit. She did not get the test.

John sent a protocol of herbs and vitamins designed to protect mom’s DNA from the damage from chemo and boost her immune system before, during, and after chemotherapy. He also had her remove all sugar and sweets. Cancer cells feed on fructose according to recent research.

Throughout seven months of chemo and radiation, my mother took Dexamethasone, a steroid, to keep the swelling down, and Kepra, to prevent seizures. Every day, I served her smoothies consisting of super green food, Chinese herbs, protein powder, good fats, broad spectrum probiotics, and digestive enzymes. She also took a lot of vitamins and additional herbs. During this time, she didn’t catch any viruses or get thrush.

Near the end of seven months of chemo, mom weaned herself off of Dexamethasone by taking it down a sliver a day. She is extremely sensitive to steroids. She also stopped taking Kepra because she didn’t like the way it made her feel. Her MRIs showed no progression. However, the seven months of chemo had caused negative side effects: her bowels stopped working for a week and she had "chemo brain", a lay term for being very cognitively foggy. In addition, she was frequently nauseous and I could barely get her to eat, drink, or take any pills.

Mom ended her Temodar in September, 2011. She got an MRI in on 3 October. It indicated no progression of the tumor and no new tumors. By the end of October, however, mom was falling apart. She could barely walk, think, or function. Because her tumor is in the left parietal lobe, her right side was affected the most. She said it felt like it belonged to someone else and it was heavy. She refused to take any steroids.

In early November, mom’s health was even worse. She wanted no more standard treatment. Our family started emailing back and forth about beginning hospice care.

I prayed to my beloved spiritual master, Meher Baba (1894-1969), on 8 November 2011, “I can’t do anything and I’m helpless and hopeless. If it is your wish to help her, please do so. I hand her over to you, come what may.” It was a sincere prayer from the core of my being.

The next day, I received a short email forwarded from a friend. The email read that we should check out Low Dose Naltrexone, accompanied by a link to LDNInfo.org. I strongly felt that this was important and called a close family friend who is a retired MD. Being a former ER doctor, he was familiar with Naltrexone as well as other opioid antagonists, but he still had to research it.

Within 9 days after that email, Mom received LDN from Skip’s Pharmacy in Boca Raton, Florida. On 18 November, she started taking a dose of 1.5 mg for two weeks. After two weeks, she raised her dose to 3 mg. Within two or three days of starting the 3 mg dose, she improved DRAMATICALLY. She stopped using her walker and her cognition improved. After two weeks, she raised to a maintenance dose of 4.5 mg each night. She will take this for the rest of her life.

In mid February, Mom had another MRI which showed no progression of her original tumor, but it indicated that a 1.6 cm new tumor had formed outside the surgical bed.

My gut feeling is that this is a tumor that grew from the end of September, when she ended chemo, until Mom started taking the 3 mg dose of LDN. While my “gut feeling” track record is 100%, I also did some research and found that many people report that after chemo it appears that GBMs grow very, very rapidly, tripling in size in just a few weeks.

Mom’s radiation oncologist said that based on her cognitive ability, her physical activity, and other health factors, her MRI didn’t match up with what he was observing. He recommended no treatment and wanted to know more about LDN. He is going to give her another MRI in May. Mom’s main oncologist wanted her to start taking Avastin and was very arrogant about LDN.

Today is the 17th of April, 2012. Mom is very active. She cleans the yard, clips the trees, cleans the house, hauls stuff out of the garage, reads, watches movies, and walks 1.1 miles a day. You would not guess that she has an aggressive brain cancer.

David Gluck, MD stated, “LDN is absolutely unique. And that's part of its problem, in that it's a brand new paradigm, a new way of thinking of treatment. Instead of the medication actually doing the work, LDN goes into the body and essentially tricks the body by forcing it to double and triple its output of endorphins and metenkephalin, also known as opioid growth factor (OGF). Those endorphins and metenkephalin, in turn, cause the immune system to strengthen. A nice way to think about LDN is that it is not like any other medication whatsoever. It is a way to strengthen the immune system.”

I view LDN as a lifeboat with many amenities, but you can add more with nutrition, exercise, and sunshine.

Here’s some of the various nutrients mom takes: Chlorella, Spirulina, Alpha Lipoic Acid, B-complex, multi-vitamins (from whole foods), melatonin, unDenatured whey from pastured dairy cows, high sulforaphane foods like organic broccoli sprouts and organic sprouted kale, N-acetyl-cysteine, CoQ10 (a water and fat soluble kind), Alpha GPC, Phosphatidyl Serine, D3, K1, K2 (MK-7), Mmega 3 DHA/EPA from micro algae, Immucare 1 and Immucare 2, and others.

Mom eats no meat from factory farmed animals/Concentrated Animal Feeding Operations (CAFO). If she eats meat, it’s only from grass/range fed animals. All conventional meat, dairy, and eggs have the number one source of dioxins, according to the EPA.

Mom also consumes a cooked mixture of organic maple syrup and organic bicarbonate of soda. She says this has helped her a lot. I did notice that after a few days of eating this mixture, her fine motor skills improved on her right side. Mom claims this mixture has helped the most, in addition to alkaline foods and drinks. I think mom’s improvement is from the increased levels of Glutathione as well as the health properties of Chlorella and Spirulina from clean, microcystin free sources. I don’t argue with her, perhaps everything is working together.

In closing, I would like to offer a few words of advice based on our experiences: Think for yourself. Research everything. If something doesn’t feel right to you, you will be stressed on some level, which will increase your cortisol. That won’t help your immune system. Listen to your own gut, not someone else’s. Have a neutral attitude, if a positive one is too much of a stretch. Doctors are not omniscient.

3 comments:

  1. Hi again Christina,

    Good to see your Mum doing so well.

    I was doing a search for Coq10 on your blog to see what you may recommend and came across a posting that doesn't exist anymore but the short excerpt, of the search, did display the following.

    Qunol Ultra High Absorption All Natural Liquid CoQ10

    I found the website for this and was disappointed to learn that it has some nasty additives in it like Polysorbate 60.

    Therefore, I was wondering if there are any other CoQ10 products that you can recommend?

    Thanks, Michael.

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    Replies
    1. Yes, but it's very absorbable in water and fat, and it's only 10 cc a day. Polysorbate 60 is used to solubilize oils into water-based products. Try researching Ubiquinol. This is a fat-soluble nutrient, so eat it with fat, I suppose. Some people have a hellava time with fat digestion, my mother had issues in the past, but lately it's pretty good. I think the probiotics and enzymes are helping a lot.

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  2. Christina.....A very good read. It is amazing how so many doctors can be SO ARROGANT and think they are all knowing. Every person MUST take charge of their own health. My wife is on LDN for a very rare type of pancreatic cancer. Its too early yet to tell if its helping her, but I strongly believe it will. I knew Dr Bernard Bihari for many years before he died. He truly pioneered the use of LDN. When my wife was diagnosed putting her on LDN was a no-brainer.

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