12 replies to this topic

[dblch]

Hi guys, I'm a glioblastoma patient who has been posting about attempts to get cryopreserved before dying. (I'm Kim Suozzi, if anyone is familiar with my situation).

Anyway ,I'd love to share my current regimen and get any opinions you might have. It's convenient for me that so many in this community are informed about dietary supplements and life extension, so I'm excited to see what you think.

My regimen has been a little weird lately, in that I've been avoiding some supplements during radiation (radiosurgery), but for the most part this is what I've been doing:

Vitamin D3, 5,000 IU twice daily
Melatonin, 40 mg nightly
Clomipramine 50 mg nightly , but in the process of escalating to 250 mg a night
Garlic, 2,000-4,000 mg daily
Flaxseed Oil, 1200 mg 2-3 times daily
Quercetin, 500 mg twice daily
Curcumin, 240 mg twice a day
Resveratrol, 200 mg nightly (this might be off, I don't have in front of me)
Milk Thistle Extract, 450 mg twice a day
Green Tea Extract, 1,000 mg daily
Dronabinol (synthetic THC), 10-20 mg throughout the day
-I also use the real stuff, inhaled via a vaporizer, 2 times a day (usually, but I sometimes I take breaks; I am the sort of person that actually finds it makes me a bit nervous)

Things that I've used in the past include:

Fish Oil (DHA), various doses
mirtazapine, 25mg (antidepressant)
Plerixafor (as a part of the trial at Dana-Farber, can't get this anymore)
Avastin (last dose 10mg/kg two Fridays ago)

There are several supplements I'm interested in, but don't have access to or have been considering but haven't made a decision about dosing yet. These primarily include:

DCA (working on getting access to this, it's available online)
Maitake Mushrooms
Berberine
Piperine (enhances bioavailability of Curcumin)
Viagra (really! it may open up the blood-brain-barrier, but I haven't been TOO into it since the BBB is impaired in GBM anyway). I'd love to talk about this more, though
Sulphoraphane
Borage Seed Oil in combo with Fish Oil - I've been hesitant to try this since I'm not too comfortable with the metabolic processes involved with Borage Seed + Fish Oil, in some cases the Borage Seed oil can cause increased proliferation of cancer cells. I need to think about this more.
Quinine (a cheap malaria drug that is hard to get in the States)
Accutane (needs script)
Perillyl Alcohol (non-toxic nasal spray, but needs script)
Metformin (needs script)
Cimetidine (needs script)
Mebendazole (not available in states)


Now, here's what I really need help accessing. Some of the drugs are simply not available in the states, and some are hard to get "off-label" but are otherwise safe. The one's that I'm desperate to get my hands on are:


Quinine (a cheap malaria drug that is hard to get in the States)
Accutane (needs script)
Perillyl Alcohol (non-toxic nasal spray, but needs script I am particularly desperate to try this)
Metformin (needs script)
Cimetidine (needs script)
Mebendazole (not available in states)

Is there anyone out there that can help? Any doctors willing to prescribe off-label? Anyone out of the states that could ship something over? (I will pay for all costs).


Another problem I've run into is the issue of what antidepressant is best. There's probably the most research out there for clomipramine, but I was doing mirtazipine for awhile with the rationale that it might overcome a roadblock associated with plerixafor/CXCR4 inhibition. I'm not on plerixafor anymore, but I was always curious if this was a better bet in a CXCR4 inhibition context to further inhibit CXCR4. I also don't know how to handle this info, and my neuro-oncologist on the plerixafor trial could't answer it for me, but it appears that chronic THC exposure causes overexpression rather than inhibition of the T cells in the CXCR4 line, by overexpressing CD4+ and CD8+. This are typically associated with cancer killing cells, but I've always worried that THC might be contraindicated with a CXCR4 inhibiting treatment. If anyone knows more about blocking CXCR4 or using mirtazapine, I'd be glad to get some more info. Mirtazapine might be even more effective when combined with the anti-fungal known as clotrimazole (needs script for pill version). Part of this mess is that it's hard to combine antidepressants with other antidepressants because the side effects can become dangerous (seizures, psychomotor deficits) so I have set my priorities carefully. Also, fun fact: mirtazipine gives me vivid hallucinations upon waking, probably because of the combined effect of mirtazipine's serotonergic action and this thing called "peduncular hallucinosis" that can be caused by (you guessed it) peduncle/brain stem lesions. Luckily I knew the hallucinations were not real, but it was bizarre to say the least.

Alright, sorry this message is so long, and I hope to answer any questions about my rationale if you are curious. Hopefully others can find some use for me since so far I've really only been in the "help me please" corner thus far.

Let me know if you have any recommendations or venues to obtain the drugs I can't get currently.

Thanks for reading, and for any help you can offer.

Kim

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[Logic]

Welcome Kim.

Mebendazole:
I have a 30ml bottle of Cipex in front of me here:
Each 5ml contains Mebendazole 100mg
Preservatives: Methylparaben 0.2% m/v : Propylparaben 0.02% m/v

I will re-check today but as I recall the bottle cost about 4 dollars.
PM me your details and how much you would like. and I will try to get this shipped today.
Does anyone here have advice on dealing with customs?

Quinine:
Probably the easiest way of getting hold of this is to buy tonic water.
The amount in tonic water is very low however and you have to drink a lot of extremely bitter tonic water to get an effective dosage. I know from getting a maleria relapse in a small town where the chemist had gone away for the weekend.

I will find out about Quinine pills while pricing the Mebendazole.


I am re-posting the links to research I have found so far here.
I am not qualified to comment on synergies, interactions etc. but hopefully the more qualified people here will find them usefull in coming up with a stack:

Antiparasitic mebendazole shows survival benefit in 2 preclinical models of glioblastoma multiforme:
http://www.ncbi.nlm....pubmed/21764822

The Anthelmintic Drug Mebendazole Induces Mitotic Arrest and Apoptosis by Depolymerizing Tubulin in Non-Small Cell Lung Cancer Cells, Ji-ichiro Sasaki,Rajagopal Ramesh,Sunil Chada,Yoshihito Gomyo,Jack A. Roth andTapas Mukhopadhyay, Molecular Cancer Therapy November 2002 1; 1201
http://www.ncbi.nlm....ng Cancer Cells

Mebendazole Elicits a Potent Antitumor Effect on Human Cancer Cell Lines Both in Vitro and in Vivo, Tapas Mukhopadhyay,Ji-ichiro Sasaki,Rajagopal Ramesh, and Jack A. Roth, Clinical Cancer Research September 2002 8; 2963
http://www.ncbi.nlm....tro and in Vivo

Mebendazole Induces Apoptosis via Bcl-2 Inactivation in Chemoresistant Melanoma Cells, Nicole Doudican, Adrianna Rodriguez, Iman Osman and Seth J. Orlow, Molecular Cancer Research, August 2008 6; 1308
http://www.ncbi.nlm.... Melanoma Cells

Mebendazole inhibits growth of human adrenocortical carcinoma cell lines implanted in nude mice, Daniele Martarelli, Pierluigi Pompei, Caterina Baldi and Giovanni Mazzoni, Cancer Chemotherapy and Pharmacology, Volume 61, Number 5, 809-817
http://www.ncbi.nlm....ed in nude mice

Mebendazole Monotherapy and Long-Term Disease Control in Metastatic Adrenocortical Carcinoma, Irina Y. Dobrosotskaya, MD, PhD, Gary D. Hammer, MD, David E. Schteingart, MD, Katherine E. Maturen, MD, Francis P. Worden, MD, Endocrine Practice, Volume 17, Number 3 / May-June 2011
http://www.ncbi.nlm....tical Carcinoma

Anti-tumor effect of beta-elemene in glioblastoma cells depends on p38 MAPK activation.
http://www.ncbi.nlm....pubmed/18442668

Combination treatment of glioblastoma multiforme cell lines with the anti-malarial artesunate and the epidermal growth factor receptor tyrosine kinase inhibitor OSI-774.
http://www.ncbi.nlm....pubmed/18442668

Berberine induces G1 arrest and apoptosis in human glioblastoma T98G cells through mitochondrial/caspases pathway.
http://www.ncbi.nlm....pubmed/18379040

Curcumin Fights Cancer, is iBioavailable, 8 gr/day, crosses BBB for GB
http://www.longecity...ses-bbb-for-gb/

IP6 Shines Brightly as an Alternative Cancer Treatment and Preventive
http://www.naturalne...r_research.html

Self-healing: recovery from a “terminal” Glioblastoma Multiforme (GBM IV brain tumor) diagnosis using a nutritional, holistic approach
http://www.healingca...multiforme.html

[Logic]

The info in this thread may be worth looking at Kim.
Especially the info about brain cancers needing glucose.

http://www.longecity...post__p__279646

Also Salvestrols look interesting, but I did not find any published papers on them:

http://www.longecity...post__p__515587

Edited by Logic, 27 August 2012 - 10:18 AM.

[niner]

Cimetidine (needs script)

Cimetidine is available Over The Counter (OTC; i.e., without prescription). Walgreens has it; other places probably do as well.

[Logic]

My apologies for telling you that you would get good advice and assistance here Kim. It seems I was grossly mistaken.

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Scientists Find Potential Benefit Of Hypericin For Recurrent Brain Tumors
http://www.medicalne...ases/221963.php
This is basically St John's Wort, so you may be able to kill two birds with one stone (cancer + depression) with it.

[niner]

My apologies for telling you that you would get good advice and assistance here Kim. It seems I was grossly mistaken.

It's only been two days, and I think a lot of people are on vacation. It's been kind of quiet lately.

You might want to check out some of the curcumin threads. Click the magnifying glass icon in the upper right corner to get the native search application.

[nameless]

I'm afraid I can't offer much advice, but for the nasal spray, it seems a bit strange that it'd require a prescription, considering the ingredient.

I've seen it listed online for sale, as from here:

http://www.medicorca...spray-poh-56ml/

I can't say if they require a prescription (doesn't seem like they do), or their quality, but it may be worth contacting them.
I see you also take flaxseed oil, and have read it may be best to take flaxseed w/cottage cheese for absorption (Dr. Budwig diet)... don't know if there is any validity to her claims, but thought I'd mention it.

Edited by nameless, 29 August 2012 - 06:11 PM.

[Logic]

It's only been two days, and I think a lot of people are on vacation. It's been kind of quiet lately.

Ah... I wondered why things seemed quieter.

You might want to check out some of the curcumin threads. Click the magnifying glass icon in the upper right corner to get the native search application.

+1 on circumin at the correct dosage; which one needs to look up.

Also Resveratrol?
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If the St John's Wort doesnt help for depression this certainly will!
Cannabinoid action induces autophagy-mediated cell death through stimulation of ER stress in human glioma cells:
http://www.jci.org/articles/view/37948
I recommend eating it and being carefull of too many anti-depressants?
Edit: I just noticed you already take this.

I am also wondering about Lithium?
It seems to be highly protective of healthy cells and to kill off pre-cancerous cells?
If it kills of pre cancerous cells; what does it do to cancerous cells?
http://www.ncbi.nlm....37/?tool=pubmed

(These links are all from the Autophagy thread)
http://www.longecity...ium#entry527211

Edited by Logic, 30 August 2012 - 09:43 AM.

[dblch]

Thanks everyone! I have already started some of these supplements and am waiting for more to arrive in the mail.

[1kgcoffee]

That's a good start you have.
What brand of curcumin are you taking? You should increase the dosage 10-fold at least. It crosses the blood brain barrier and has strong cancer fighting abilities. But you'll need to saturate yourself with it. Liposomal formulation appear to be well absorbed
-Add to that delta and gamma tocotrienols (AC grace brand). Again, in excess of normal dosage. Since it's expensive I'd go with 500mg or so.
-Add AHCC, two grams at least, more if you can swing it. This is the active cancer fighting ingredient in medicinal mushrooms. Kinoko gold brand.

If you can stomach the awful taste, I would make a strong decoction of the following herbs, and drink it frequently:
-Creosote bush tea tastes like ass, but is very cheap and contains NDGA, similar to resveratrol and potent against cancer. Also contains limonene and pinene
-Olive leaf, which contains highly potent small molecules similar to resveratrol.
-Dandelion root contains luteolin and cancer fighting glycosides
-Cats claw bark

Brew for at least 20 minutes. You can buy these many places, but my personal favourite is mountainroseherbs.com
It's a good idea to take dandelion root seperately, as well as brewing it into a tea.

As for the resveratrol, that's a pretty small dosage and I doubt it's doing much. The best way to take resveratrol is sublingually. Open the cap, put some under your tongue and let it dissolve. It goes right into the bloodstream. Resveratrol is metabolized quickly, so it's best to take multiple times through the day.
Take care of yourself dblch. And keep us posted on how you're doing. I will be watching this thread.

Edited by 1kgcoffee, 16 September 2012 - 05:43 AM.

[Logic]

Does anyone have any contact details for Kim?
I want to get Mebendazole to her so plz PM me if you do.

[Lovesnake]

Hi Kim !

Ask your Dr if you can swap dronabinol for sativex. It contains all the beneficial properties of the entire plant rather than one synthetic cannabinoid.

Sativex youtube video

[xEva]

Kim, you may want to look into the long term fasting on water followed by low cal ketogenic diet or low cal, low carb diet. This is known to starve the cancer cells in the brain, that require plenty of glucose for growth. There is info if your google.