Begin story:
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 was working on her nursing notes and then she lost consciousness briefly and was very disoriented. She dialed 911.
The surgeon excised what he could of a 5.4 cm tumor on Monday, 14 February. She has a grade IV Glioblastoma brain tumor (GBM).
The standard of care for her GBM is to wait about 4-6 weeks after surgery and then take oral chemo Temodar (temozolomide) for 42 days while taking six weeks of radiation, five days a week. You continue to take temozolomide for six months, five days a month.
Apparently in about 50% of of patients Temodar (temozolomide) extends life, the quality of life it extends is questionable. I say about 50% because it depends on the activity of the MGMT/AGT gene.
This excerpt from Wiki explains: The therapeutic benefit of temozolomide depends on its ability to alkylate/methylate DNA, which most often occurs at the N-7 or O-6 positions of guanine residues... In some tumors, epigenetic silencing of the MGMT/AGT gene prevents the synthesis of this enzyme, and as a consequence such tumors are more sensitive to killing by temozolomide...
From what I?ve gathered, 45-50% of the population have ?silencing of the MGMT/AGT gene? and temozolomide is more effective and the others don?t gain much benefit from it, but boy do they suffer from the chemo! Our Chinese Medicine practitioner really wanted her to get the MGMT test done and I pulled out all the stops to make it happen. Mom?s oncologist said that whether or not she?s got the silenced gene, the only thing she could do was take temozolomide as the first line no matter where she went for treatment, even if it test result showed that temozolomide provided little to no benefit. Lovely.
The first thing I addressed with Mom was attitude. Mom has never been a positive person, she tends towards negative and then labels negative ?realistic?. I said to Mom, ?Doctors are not omniscient, so we can at least be neutral in our attitude if positive is too much of a stretch.? This worked.
Before chemo and radiation began, and almost until the end of seven months of chemo, Mom was taking Dexamethasone, a steroid to keep the swelling down and Kepra to prevent seizures. During this time, all I could do was make the most nutrient dense foods for her I could think of, Super Critical 200 Billion probiotics, and super green food with digestive enzymes. Gut health is extremely important. I also gave her the best vitamins and herbs I could think of. Fortunately I had a good handle on nutrition before this happened.
Mother and I belong to a small, yet world wide community of followers of Meher Baba. I got an email about a man named John in our faith who lives in North Carolina. He?s a Chinese Medicine Herbalist and Acupuncturist who is extremely familiar with Glioblastomas of all things. He sent the different herbs and protocol to get Mom on before starting chemo, during and after. John explained that what the various vitamins and herbs do was protect Mom?s DNA from the damage from chemo and boost her immune system, as well as other mechanisms that are too detailed to explain (something about down-regulate VEGF expression). He also had her remove all sugar/sweets, except a little maple syrup in coffee. Cancer loves sugar!
During first six weeks of everyday chemo and five day a week radiation, Mom faired pretty well. She didn?t even get a cold even though she was exposed to my daughter?s cold.
After the first six weeks, Mom began the once a month temozolomide, she was still taking the other prescription drugs and still on the herbs and vitamins too. Her MRIs showed no progression.
Near the end of the seven months of chemo, Mom weaned herself off of Dexamethasone by taking it down literally a sliver a day, she?s extremely sensitive to steroids. She also stopped taking Kepra because she didn?t like the way it made her feel. Her MRIs were looking good. However, the seven months of chemo caused her bowels to stop working for a little while (among other bad side effects, such as chemo brain) and she wasn?t eating that much. She was always nauseous. She had two trips to the ER. They did nothing for her.
Mom ended her temozolomide in September. She got an MRI in on 3 October: no progression. 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. It felt like it belonged to someone else and it was heavy.
In early November things were looking bleak. She wanted no more standard of care. The family started emailing back and forth about hospice coming over to the house and various things. She bought a cremation package from the Neptune Society.
I prayed to God 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, Mom received just a short email from a friend saying that we should check out Low Dose Naltrexone accompanied by a link. Mom didn?t have any strength to look into it, but she forwarded it to me. I felt that this was important and I got on the phone with our good friend since 1972, a licensed MD but he?s retired. 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 Mom had the LDN from Skip?s Pharmacy. On 18 November, she started on LDN 1.2 mg (it was supposed to be 1.5 but I wrote it down wrong) the first two weeks. Then she started the 3 mg dose for two weeks. Within a few days of taking the 3 mg dose, she improved DRAMATICALLY. Now she?s on 4.5 mg at night.
Before LDN, I had booked a trip for early December to the Meher Spiritual Center in Myrtle Beach, South Carolina. This was the unvoiced so-called ?last trip?. Right. Mom had lots of energy, she walked around all over the sanctuary without a walker or cane, and she prepared a lot of her own food!
At the time of this writing it?s the 27th of March 2012. Mom takes 4.5 mg of LDN at bedtime. She?s doing quite well to say the least.
David Gluck, MD stated, ?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.?
Another way to strengthen the immune system, so that LDN has more to work with, is through diet, exercise, and attitude. Mom walks about 1.1 miles a day. The original herbs and vitamins helps Mom a lot, but I kicked it up a notch or two and added a few things to help her immune system get even stronger. I also removed some because of the cost and redundancy. Here?s a few of the herbs, nutrient dense foods, or vitamins she takes:
ChlorEssence and Organic Spirulina.
300 mg of Alpha Lipoic Acid by Metabolic Maintenance
B-Complex and other multi-vitamins from whole foods
10 mg Melatonin lozenge at night
Qunol Ultra High Absorption All Natural Liquid CoQ10
Microalgae oil (this is DHA omega 3 from algae, where the fish get it)
Alpha glycerophosphorylcholine (alpha GPC)
10,000 IU D3 with K1 and K2 MK7 and the co-factors of D such as magnesium glycinate and others.
Maple syrup and bicarbonate of soda. This she says has helped her a lot, even though people may think it?s nuts. Within days of starting this her fine motor skills improved on her right side.
The entire list is here: http://tinyurl.com/LDN-Glio
In closing, I want to share a few words of wisdom: Think for yourself. Research everything. Don?t go off half-cocked. If it doesn?t feel right to you, then you will be stressed on some level and increase your cortisol and that won?t help your immune system. Listen to your own gut, not someone else?s.
Source: http://quasi-vegan.blogspot.com/2012/03/my-mothers-brain-cancer.html
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