Sep 15, 2017
TRANSCRIPT (links to follow)
This is Episode 006 of Glioblast‑O‑Cast. What about supplements and alternative treatments?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I'll answer the question: What about supplements and alternative treatments? I'll share what I have tried and what I still take and what I plan to try next.
Before I get into my approach to supplements and alternative treatments, please understand that this is about my specific journey, and in no way am I advising any specific supplement or alternative treatment to substitute for medical care. The best course for adding supplements and alternatives is to consult a naturopathic oncologist to find the plan that works for you.
At first I did consult two different experts for treatment. But for various personal choices, I ended up doing my own research and deciding what made sense to me.
So this episode is really about how to be smart about alternative options if you don't have access to a naturopathic oncologist or just want to find your own options.
Again, if you are able, always consult a professional doctor.
My method is all about one step at a time. I know there are many options of supplements that can help with symptoms of glioblastoma treatment. And at first, there's that almost panic feeling of wanting to throw everything that might help at the brain tumor.
But my reason for one new thing at a time is to be sure that the new thing works for me, to make sure I don't have an adverse reaction to something most people can tolerate. I will absolutely never forget my platelet transfusion reaction. And you can check Episode 4, what was chemo like, for that story.
What I discussed in Episode 5 about finding reliable information still holds for alternative treatment and supplements.
Be wary of sites that have an abundance of advertisements, and look for information with science and official studies to support the supplements' use.
Read the ingredients list and know what the potential side effects are and if it might counteract your current treatment and other medication.
And always discuss your plans with your doctor.
Since my oncologist gave me the news of the hospital's decision not to continue my treatment with the standard Temodal and gave me no other medical options, I have added supplements to my daily routine. You can see my show notes for links to some of these supplements.
In addition to Keppra, which I take to control seizures, I take capsules of Boswellia. I take Curcumin with Bioperine. I take chlorella, and I juice every day.
Next on my list is to add milk thistle and see if that works for me. And I'm researching hyperbaric oxygen treatment as well as medical marijuana.
So I can say so far so good for me with all the supplements that I take.
If you would like some links to start, you can always visit my show page.
Thank you for listening. This has been Glioblast‑O‑Cast Episode 6.
Theme music for Episode 006: “Beach Bum” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
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Here are some links to some naturopath type options. I try to find information that can be backed by science with a study. I also add only one new thing at a time. That way, I can tell if it is helping. I know that it feels like time is running out, but throwing everything all at the same time won’t let you know what is working and what is harming. Once I find something that works for me, I stick with it and then add the next thing.
Always be sure to consult with your doctor before mixing in other things. It’s important to check for interactions with whatever other medication or supplements you are using.
Sites with information in many categories
Treating Glioblastoma: a patient advocacy site http://www.treatingglioblastoma.com/supplements.htm
Examine.com: “Examine.com is an independent and unbiased encyclopedia on supplementation and nutrition . We are not affiliated in any way with any supplement company. Founded in early 2011, we have one goal - to be the unbiased source for supplements and nutrition. We have spent tens of thousands of hours collating the latest scientific research. This site is run by editors who examine primary research. Users are encouraged to submit corrections and any research we may have missed.” https://examine.com/supplements/
Memorial Sloan-Kettering Cancer Center: About Herbs, Botanicals
& Other Products
https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs
Information from long-term survivors using a “cocktail” approach
Ben Williams, surviving since 1995 https://virtualtrials.com/williams.cfm
Cheryl Broyles, surviving since 2000
http://www.cherylbroyles-gbm.com/
Specific informational links
Boswellia links:
Boswellia serrata (BS) is an extract of Indian frankincense. This is for swelling instead of dexamethasone or other steroid. It should be listed on the ingredients from the supplement manufacturer as at least 59% boswellic acids, as noted in the study.
Wiley Online Library
Boswellia serrata acts on cerebral edema in patients irradiated for
brain tumors. A prospective, randomized, placebo-controlled,
double-blind pilot trial. Forty-four patients with primary or
secondary malignant cerebral tumors were randomly assigned to
radiotherapy plus either BS 4200 mg/day or placebo. http://onlinelibrary.wiley.com/doi/10.1002/cncr.25945/full
Hecht Pharma (Germany)
https://www.hecht-pharma.de/h15-weihrauch-350-mg-kapseln
this was the brand used in the above study
Examine.com https://examine.com/supplements/boswellia-serrata/
Treating Glioblastoma: a patient advocacy site (specific info for Boswellia) http://www.treatingglioblastoma.com/supplements/boswellic_acids.htm
Memorial Sloan-Kettering Cancer Center (link specific for Boswellia) https://www.mskcc.org/cancer-care/integrative-medicine/herbs/boswellia
Turmeric Curcumen:
this could have potential interactions with thinning blood, check
dosage and interactions with other medication
Turmeric For Health
This was the protocol I started with, using capsules of curcumin
with bioperine.
https://www.turmericforhealth.com/general-info/turmeric-curcumin-dosage-for-cancer-a-scientific-plan
Cancer Research UK
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/can-turmeric-prevent-bowel-cancer
Superfoodly:
Which Curcumin Supplement Has The Best Absorption?
while this is a site that sells supplements, this particular
comparison is backed by good resources
https://www.superfoodly.com/best-turmeric-curcumin-supplement/
Glucosamine
http://www.sciencedirect.com/science/article/pii/S0006291X10013616
http://www.anti-agingfirewalls.com/2014/06/09/glucosamine-for-longevity/
Milk Thistle
University of Maryland Medical Center http://www.umm.edu/health/medical/altmed/herb/milk-thistle
Hyperbaric Oxygen
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4487135/
Medical Marijuana
Rick Simpson Oil (RSO) http://phoenixtears.ca/
General Nutrition
I started Juicing everyday. This site has great recipes that can be searched by health benefits.
https://juicerecipes.com/recipes/