Hi all,
Thank you so much to Stephen, Ben, and all of you folks for sharing your insights and information as we navigate through this. I had emergency surgery a few weeks ago and was diagnosed with GBM wild type. The tumor was 7 cm, right parietal lobe, full resection, MGMT methylated, IDH1 negative. My pathology report shows high CBL mutation frequency, high TP53, and my PDGFRA mutations and amplification appear frighteningly off the charts, but that's a whole other question :/
I've put together a cocktail for my six-week chemoradiation term, into which I'm eight days. I would appreciate any recommendations on what I might add, remove, revise. Thank you!
Medication
|
DailyDose
|
Temozolomide
|
100 mg
|
Celebrex
|
400 mg
|
Chloroquine
|
250 mg
|
Naltrexone
|
4.5 ml
|
Melatonin
|
20 mg
|
Noscapine*
|
60 mg
|
CBD/THC
|
1 g
|
Progesterone**
|
300 mg
|
Supplement
|
Daily Dose
|
Boswellia
|
5 g
|
Berberine
|
1 g
|
Curcumin
|
5 g
|
Flaxseed Oil
|
43 g
|
Garlic Extract
|
|
GLA
|
3 g
|
Magnesium
|
200 mg
|
Probiotics
|
|
PSP
|
3 g
|
Sulfurphane
|
120 mg
|
Milk Thistle
|
1 g
|
Zinc
|
25 mg
|
(I'm holding off on antioxidants until after radiation.)
*Noscapine: One of my doctors recommended it. I haven't seen it mentioned here, and I'm wondering if its inclusion is truly beneficial or should be removed. Here are some links:
Noscapine inhibits tumor growth in TMZ-resistant gliomas
https://www.ncbi.nlm.nih.gov/pubmed/21925789
Synergistic suppression of noscapine and conventional chemotherapeutics on human glioblastoma cell growth
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4002615/
But this thesis contends it's effective on its own for glioma cells but is not synergistic with TMZ. http://digitallibrary.usc.edu/cdm/ref/collection/p15799coll127/id/269936
**Progesterone
I had already been taking this before my diagnosis, and I increased the dose after having read some promising studies.
Anti-tumor effects of progesterone in human glioblastoma multiforme: role of PI3K/Akt/mTOR signaling
https://www.ncbi.nlm.nih.gov/pubmed/24787660
Synergistic Effect of Combination Progesterone and Temozolomide on Human Glioblastoma Cells
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0131441
But then I came across this:
Proliferative and Invasive Effects of Progesterone-Induced Blocking Factor in Human Glioblastoma Cells
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5266854/
Does the latter study imply it's instead dangerous for me to be on progesterone at all?
Thank you, and strength, peace, and healing to you all!
I'm not able to properly comment until tomorrow. But I would be very careful with the progesterone.
ReplyDeleteSee my brief article called Pregnancy and Gliomas
http://astrocytomaoptions.com/pregnancy-and-gliomas/
Increased tumor growth rates during pregnancy is an observed fact, and it is speculated that this is due to the increased levels of female sex hormones.
See also
https://www.hindawi.com/journals/bmri/2014/393174/
Progesterone Induces the Growth and Infiltration of Human Astrocytoma Cells Implanted in the Cerebral Cortex of the Rat
and
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4975780/
Expression of estrogen and progesterone receptors in astrocytomas: a literature review
"Overall, higher tumor grades were associated with decreased estrogen receptor expression and increased progesterone receptor expression."
Noscapine is one of many drugs that has showed benefit in glioma mouse models, but is without human evidence. I haven't focused on it because it is difficult to find in North America where I am, but if you've already obtained it, I don't see a reason to stop taking it.
ReplyDeleteProgesterone is the only drug on your list that worries me.
There is a wide variety of curcumin supplements, which vary widely in bioavailability. Longvida is the brand I generally recommend, although I'm not sure what country you're in and whether it's available where you are.
https://www.nutrivene.com/view_item.php?id=331 (This is one of the more common brands containing Longvida)
Flax seed oil is a source of alpha-linolenic acid, an 18 carbon omega 3 fatty acid. In the body some of the alpha-linolenic acid can be converted to longer chain omega 3 fatty acids such as EPA (20 carbon) and DHA (22 carbon), but the conversion is incomplete, and especially limited for DHA. Most of the cancer studies I've seen have focused on EPA and DHA (found in cold water fish oil), rather than the ALA found in flax seed oil. In any case, both flax seed oil and fish oils should be kept cold, and protected from air and light. These highly unsaturated oils are unstable and go rancid very quickly.
GLA. Ben Williams included this oil based on clinical evidence where the GLA was injected directly into the tumor. Neither Ben or I recommend this now. There is (animal) evidence that it doesn't really cross into tumors after oral ingestion. Omega 3 fatty acids primarily from fish oil, secondarily from flax seed oil, is probably the better alternative.
https://www.ncbi.nlm.nih.gov/pubmed/19014610 "GLAO [GLA oil} increased serum concentration of GLA but had no significant effect on tumor GLA or dihomo-gamma linolenic acid (DGLA) concentrations."
My partner is currently undergoing radiotherapy and will then be doing 6 months of TMZ treatment, so I have been looking at potential medications or supplements for her to take during the TMZ treatment and just came across Acetazolamide (an altitude sickness medication) which looks really promising.
ReplyDeleteHere is the article: https://www.sciencedaily.com/releases/2018/07/180709132711.htm
The are about to begin a clinical trial of Acetazolamide With Temozolomide - https://clinicaltrials.gov/ct2/show/NCT03011671?term=Acetazolamide&cond=Glioma&cntry=US&rank=1
I couldn't find anything on the forum about Acetazolamide and was wondering of anyone had any further info on it or has used it in conjunction with TMZ?