When I first joined the Cancer Compass forum, it was very early on (around page 45 or so). At that time, I wasn't sure how squirrely I would have to be in order to get prescription meds, so I used the pseudonym "Alan" in order to discuss all levels of things.
My name is Kendall, and my now fiance Bernadette was diagnosed with GBM on November 12, 2014 at the age of 26. She had surgery to remove about 96% of it on November 13, 2014.
Tumor Information:
About the size of a lime
Located in right frontal lobe
IDH mutation (usually mutually exclusive from EGFRvIII mutation, so rather rare)
MGMT methylated
EGFRvIII positive (usually mutually exclusive from IDH mutation, so rather rare)
Giant Cell GBM (maybe around 5% of GBM's are giant cell?)
p53 mutation
Had standard 6 weeks of chemoradiation, and it currently only 5/23 cycles of TMZ. She weighs about 100 pounds, so take that into consideration when looking at dosages.
We've gone through iterations of her cocktail, and this is what she is currently doing. I've listed dosages and brands as best as I could. I've also broken down as to exactly when she takes pills. Before a meal means it's on an empty stomach. Before bed also means it's on an empty stomach. I try to merge this cocktail as seamlessly with her normal life as I can, so to make it easier on her, I take a weekly pill holder (Monday - Sunday), and fill it with a day's worth of pills. Monday is before breakfast, Tuesday is after breakfast, etc. She currently does not take anything after lunch (Thursday), so I leave a Zofran in there in case she's feeling nauseous. I make each batch the night before. Just my way of keeping things organized so that she doesn't have to bother with things too much. She knows she needs to take a certain batch of pills at a certain time, and that's all she really has to bother with.
I consider this to be a very fluid cocktail. We will likely be adding DCA as our next agent, and will be closely following Seth's experience with Macitentan as well.
If you have any questions, please ask!
Kendall
Kendall
ReplyDeleteI have been thinking about adding THC/CBD oil on and off for months. Seems increasingly popular but without much data to base the decision on. But neither does most of the other supplements/meds we are using. Anyway, why are you using only during chemo cycle?
Michael,
ReplyDeleteThe mouse study combining THC/CBD with radiation was quite convincing for me. It showed tumor growth was inhibited by the THC/CBD alone, and in fact, those tumors were smaller than the ones that received radiation. The combination of the two showed great synergy. I'm quite convinced that it reaches the brain in adequate amounts to be effective because the effects can easily be seen.
Beyond that, there are many anecdotal stories of people who had used combination THC/CBD oil alone, and the one teenage girl who had the diffuse glioma comes to mind there. I certainly don't view it as a miracle cure, but there's enough evidence to warrant it's inclusion into the cocktail.
Finally, Stephen and I had discussed this a bit on the previous lengthy forum. Liliana Soroceanu at the California Pacific Medical Research Institute found that treatment with CBD alone resulted in increased ROS generation, which GBM cells responded to by upregulating their antioxidant response genes (I'm taking all of this from Stephen's supplement section on Astrocytoma Options). While this doesn't speak to the response when CBD and THC are given together, it prevents me from wanting to dose CBD alone.
The CBD doesn't result in psychoactive effects, while the THC certainly does. It would be impossible for her to maintain any quality of life while dosing THC continuously. Cheryl Broyles doses it on a somewhat continual basis, which she says is about 0.05 g of each at night. We could theoretically do it at that low dose every night, but I'm of the opinion that it would be more beneficial at a higher dose at the same time as TMZ.
Many papers speak to the combination of TMZ and THC being effective, but most seem to be in vitro.
Finally, with everything combined, the TMZ cycles can be pretty rough for her. Minocycline isn't tolerated very well, so we're only using that during cycles as well. Adding the oils means that she doesn't have to deal with the stomach and nausea issues from the Minocycline or from the TMZ. To be quite honest, she sleeps for about 80% of the time during the 5 day cycles. The oils do not stimulate the appetite. While smoking or vaporizing small amounts of the plant provides that benefit, the mega-dose that you get from the oil takes you straight to the "i must sleep right now" state.
So when you combine all of those reasons with the cost, the result was simply the best strategy for our situation.
Don't understand the part about cbd. Is it bad to take cbd without the thc? My dad is taking only cbd?
DeleteHanna,
DeleteI don't think there is any hard evidence either way. A lot of papers I've found have shown synergy by treatment with THC + CBD. Some papers Stephen has referenced have shown an antioxidant response from CBD treatment. My choices were as follows:
1. Take CBD + THC everyday - this was ruled out because of quality of life issues. The effects of the THC are just too strong.
2. Take CBD everday and take THC only during chemo - we chose not to do this in order to attempt to avoid the CBD induced antioxidant response.
3. Take CBD + THC only during chemo - this option was chosen in an attempt to maximize the benefits while minimizing the use. Papers show synergy with TMZ, so taking it during the cycle potentially gives us the most bang for the buck. It still costs about 100 dollars per cycle taking it only during the cycle, so it would be extremely expensive to take it everyday.
Thanks Kendall
ReplyDeleteHi Kendall,
ReplyDeleteThanks for sharing you and your fiance's story with us.
My wife has a Grade III anaplastic glioma and we are quite new to the 'cocktail' approach. I have a question in relation to where you are getting your medicinal mushrooms from. I noticed that you are buying them from three separate sources:
- JSH
- Mushroom Wisdom
- Mushroom Science
Is there a particular logic for mapping the different mushroom types to different suppliers? Is it cost related or are there therapeutic reasons for the decision?
I am asking because it is much harder to sources these medicinal mushrooms from Australia, hence I'm thinking of getting the mushrooms sent from the US. It will likely be cheaper from a shipping perspective to buy from one source if possible. On that note, if you don't think there are significant differences between the brands and had to choose to buy all (Maitake, Shiitake, Reishi and Turkey Tail) from one source only, who would you recommend?
Thanks so much. It is really helpful that you have also shared the specific brands.
Cheers.
Raymond,
ReplyDeleteI included all of the brands that we've chosen to go with because, throughout the length of the very large previous thread, a lot of discussion was done regarding the best brand of certain supplements. For some supplements (like the Longvida Curcumin and the Maitake 4x Pro) the brand is - theoretically - important. I only say that because, with the limited amount of information we have, everything is theoretical. In the end, many people will have to end up simply doing the best that they can.
As far as the medicinal mushrooms we use, cost and suppliers is probably the main factor. I think that JHS and Mushroom Science really seem to be the same company. It seems that JHS does bulk supply for resellers, while Mushroom Science seems to be their direct to consumer branch. Everything Mushroom Science is colorful and fancy, while the JHS stuff seems to be the same pills, just without all the jazz. Either way, one of my sources of supplements offers the bulk JHS bottles, so I got the reishi and coriolus through them. JHS doesn't offer the shiitake, so I had to buy that through Mushroom Science. In fact, I had signed up for email alerts through Mushroom Science, and bought the shiitake when they had a sale to get rid of excess inventory.
Maitake seems to be a different story, in that Maitake D-Fraction is the important component used in many studies. There was a rather lengthy back and forth on the previous forum regarding the amount of D-Fraction that is actually present in different brands. Unfortunately, that issue was never really resolved. Perhaps I should start a Maitake D-Fraction thread here to revive that discussion.
Either way, the Maitake Pro 4x - seems - to offer the most D-Fraction in the least number of pills.
Another reason for the variation of suppliers would be the dosage of each pill. For example, I wanted to get 3g of coriolus. Using the super strength from JHS at 600 mg each, that's 5 pills each day. If I were to use the coriolus from Mushroom Wisdom, each serving of 4 tablets provides 800 mg, or 200 mg per tablet. That would be 15 tablets per day to get the 3g I want.
So my main constraints for choosing multiple suppliers were cost and dosages.
If I were in your position, and I wanted to get the best stuff with the least shipping charges, I would first call JHS. I'd get the coriolus and reishi through them, but also ask if they had shiitake. If they are, in fact, associated with Mushroom Science, perhaps they could combine shipping. I'd get the Maitake from Mushroom Wisdom though.
Hopefully I kept all of the companies straight throughout.
Also, we are taking 4 different types of mushrooms, and those pills take up about half of the total supplement pills each day. Whether or not this is better than, say, taking only 2 of the different types, I don't know.
One study I had read showed that maitake and shiitake combined were better than either alone. Coriolus is probably the most widely-used. If I were forced to eliminate one from the regimen, I guess it would be reishi.
Any input from others on mushroom pills?
Kendall
Hi Kendall,
ReplyDeleteThank you so much. Really appreciate the detailed response.
- I had a look at JHS and Mushroom Science. Yes they appear to be the same company, and in fact I think JHS is the old name, and Mushroom Science is the new name according to Mushroom Science’s "About Us" page: https://www.mushroomscience.com/about/
- I think JHS now offers Shiitake as well through their website, simply the Mushroom Science branded offer, at the same price. They must have now made the full transition of branding and now cross selling between the two brands
- That is very helpful re Mushroom Wisdom on Maitake. I would definitely want to go with this brand if they are able to get the greatest concentration per tablet in their Professional range. The issue is that apparently I am not able to buy direct through their website in Australia, and instead we apparently need to see a naturopath here, and they will then order the products for me...
For Reishi, my wife has been taking the Nuskin Reishimax product for almost a year now.
https://www.nuskin.com/en_US/products/pharmanex/targeted_treatments/immune_support/01003519.html
She definitely feels the impact of it, but if I can get a cheaper source (from them it's ~$100USD for 60 tablets) that would be great. We will try Mushroom Science and see whether there is a difference in impact.
Thanks again!
Update: I contacted Mushroom Science directly - yes they are indeed transitioning their brand from JHS to Mushroom Science, and is about to shut down the JHS website now that they have almost made the full transition.
ReplyDeleteHope that helps.
I'm not sure if I am doing the right thing but I buy almost all our supplements from amazon in us. I assume that those are the same mashroom from the same suppliers you mentioned above.(mashroom science, mashroom wisdom) but it is more convenient. We had amazon prime this year and all the shipping was free. You can combine boxes and do lots of things. The price is sometimes lower than directly from the supplier.
ReplyDeleteHi there
ReplyDeleteCouldn't help but see that you have stated where you got Celebrex from, I am having great difficultly I getting hold of Celebrex. Please could you give me some more information on this please.
Also in a comment above I see some asked about weather cannabis gets to the brain.
Witch it most defenitly dose.
I can't understand why people are worried about the physco active thc (delta9), considering the reason why we are all on this blog in the 1st place in sure that feeling a little stoned is the least of the worries.
People get confussed on this matter.
CBd oil is legal to buy because of it's such small amounts of thc in it (traces)
CBd oil has shown to have anti cancer effect helps with controlling seziers and symptoms.
Thc in the lab has been shown to have the best anti cancer effect on attacking gbm cell lines,
Rodent study's has shown that thc +CBd (and one must remember that there is a long list of cbd's I.e cbd1 cb2 cb12, and the study dosent actually say what extract CBds it's using)
Has been shown to stop Tumor growth.
I can't understand why people are worried about the physco active thc (delta9) -
DeleteOf course people have different tolerance to it, but it really isn't nice feeling stoned whole day. I tried with high doses of it every day and could only do it for a month or so. I just slept whole day and did nothing...
Anyway, I already wrote something about using THC+CBD as suppository (rectal administration) - was able to get to 1g dose per day without feeling stoned, but how much of it is absorbed into the bloodstream is another question.