Cocktail questions, also foot twitching?

My dad aged 59 had a grand mal seizure 25th Feb 2019; operation/debulking 7th March 2019, Radiochemotherapy 30 sessions in May 2019. Completed 2nd round of 5/23 chemo cycle. He is negative for IDH, MGMT.

Overall he has been doing ok with the treatment. The only set back was when he had around 3 to 4 multiple grand mal seizures around 30th June 2019. We had no warning about that seizure and our medical team didn't warn us that he could get seizures from the radiation swelling 4 weeks post radiation (we thought maybe just during radiation treatment). He had no side effects during radiation treatment period itself - we were shocked that it happened - 

Question 1: Seizures post radiation 4 weeks after radiation

I guess it is a "normal" side effect? We thought seizures would be a side effect later on when the treatment might stop working. The hospital put him into an induce coma for 2 days to stop the seizures. He took steroids for about 6 weeks after and has come off the steroids now and has had no further seizures. We are also surprised that nobody ever mentioned to us to have buccal midazolam injection at hand as when we called the ambulance, the paramedics had to call the fire brigade for an advance paramedic to inject IV anti seizure drug. If we had the buccal midazolam this might have prevented the multiple seizures. He now carries the buccal midazolam injections around.

Question 2: Foot twitching post seizure, same side as tumor

His Keppra was 2 x 500mg up until then and now they have increased it to 2.5g per day and added Phenytoin. Since that seizure he has had a foot twitch during the night and a sore pain in his thumb - can be normal effects from the swelling and tumor? The tumor is on the left side and the twitch is on the left side which is unusual? The doctors would expect the tumor to effect the right side.

We stopped doing the cocktail after 30th June with the big seizure then but then continued with Chloroquine and Celebrex a week later. We have since started back doing the cocktail (see below).

Question 3: Celebrex

I read the Brain Tumor Charity do not support taking Celebrex and some articles says it is not good to take, what is the opinion about it now given the new clinical trail data? Also it seems like it can react with Epainutin (Phenytoin) so we give it to him in the evening. - https://www.thebraintumourcharity.org/brain-tumour-diagnosis-treatment/treating-brain-tumours/treatments-licensed-other-illnesses/celecoxib-celebrex/

https://bpspubs.onlinelibrary.wiley.com/doi/full/10.1111/bcp.12785

Question 4: Daily timetable of cocktail

Do people have a daily timetable to avoid interactions between anti-seizure drugs and others? 

Question 5: Disulfiram

We have disulfiram but we have never given it to him as it seems to interact with the Epanutin (Phenytoin). Have people taken this together?

Question 6: Curcumin

He is taking Doctors Best High absorption Curcumin with C3 Complex and Bioperin 1000 mg. This tablet he finds hard to digest because it is very big and solid even using a tablet cutter. Is there a different brand which people recommend which is easier to take?

Question 7: Reishi

He is taking Reishi as part of a multi-mushroom supplement for Brain function called Fungi Perfecti, MycoBotanicals for the Brain. However we read on Sloan Kettering that reishi is not good to take?

https://www.mskcc.org/cancer-care/integrative-medicine/herbs/reishi-mushroom

Question 8: Ranitidine in absence Cimetidine

He is taking Ranitidine as we could not get cimetidine. We asked a friend in Spain to get the cimetidine but they got us cinitaprida normon? It is for treating stomach ulcers but I guess its totally different as it doesn't appear to be a H2 antihistamine. We were not sure if it was any use giving it to my dad? We have not given him the Cinitaprida normon but we give him 75mg Ranitidine a day.

Question 9: Mebendazole

He is taking Mebendazole 100mg daily - i know its well below the dosages a human would need to take compared to the mouse study? Do people take much higher doses? The studies do not seem clear about it but I know it is used in Care Oncology alot? 

Question 10: Antibiotics Doxycycline/Minocycline

Antibiotics – he was only on these when during radiochemo phase but not now…Care oncology seems to recommend doxycycline and a rotation with other antibiotics such as minocycline? Should he start taking this too? How much do people take, do people rotate each month? Surely antibiotics will cancel out the effects of building up the immune system? 

Question 11: Valacyclovir and other antiviral drugs?

Should we look into taking Valacyclovir? (I know there is no right or wrong cocktail). If so, how do people get this, how long do they take it for? We read somewhere that people can get tested for different virus's in their system such as Herpes? Is there a test for CMV? Is there any other herpes/CMV drugs we should take?

Question 12: Amino acid Brain supplements L-tyrosine and N-acetyl cysteine

We had been giving him L-tyrosine and N-acetyl cysteine and we stopped after the seizure. I know Cheryl Broyle mentioned using NAC. I don't know if these 2 compounds have good/bad effects on the brain? For a normal brain they are meant to be good. 

Question 13: Vitamin C IV

I read up on Vitamin C IV and I don't know if we should try that - it doesn't seem clear if it is effective or not and it doesn't mention it could flush out the anti-seizure drugs?? Those studies mention N-acetyl cysteine reverses the benefits of IV Vit C?? 

Question 14: Berberine

Only recently ive seen many people taking berberine. Are many people taking this supplement?

Question 15: Other Repurpose drugs

Interesting article with a few extra repurpose drugs which I have not mentioned above. Not too familar with them and the cocktail?

https://www.canceractive.com/article/repurposing-old-off-patent-drugs-as-new-and-effective-cancer-treatments

https://www.frontiersin.org/articles/10.3389/fphar.2019.00681/full

Prescribed by GB:
Keppra - Anti seizure. he was on 500 mg x 2 day but since the seizure it is now 2.5g per day. 

Epanutin - Phenytoin. Anti seizure..100 mg x 3
Atorvastatin – Cholesterol treatment 20 mg per day
Metformin – diabetic, 500 mg twice a day
Ramipril - To lower blood pressure, 5mg

Melatonin 20 mg

Off-label prescription/non prescription drugs:
- Chloroquine Phosphate, 250 mg/day
- Celebrex (Celecoxib), 200 mg/day

- Mebendazole 100mg - this is the recommended daily dose for normal pinworm treatment but i read people are on more?

- We could not get Tagamet (cimetidine), so we were using Ranitidine, another Histamine H2 receptor (usually used for stomach uclers - repurpose of Cimetidine is immune, anti invasion. We do not know if Ranitidine is a good replacement but apparently cimetidine can interact with Celebrex, but I think Ranitidine has reduce side effects to Tagamet). - we have not restarted Ranitidine yet

Supplements: Majority of these we get from iherb apart from the coriolus versicolor which we order from evitamins.

- Coriolus versicolor extract PSK/PSP (Turkey tail mushroom)
- Maitake-D mushroom extract, 1200mg per day
- Reishi mushroom extract - for immune. We got Fungi Perfecti mycobotanicals for the Brain
- Curcumin High absorption extract 1000mg
- Omega-3-6-9 1200 mg
- Boswellia extract 500 mg – to reduce edema
- Standard multivitamin/multimineral capsules, time-release
- Probiotic (Garden of Life, Dr. Formulated Mood+ 16 strains)
- Vitamin D, 5,000 IU/day
- Selenium (we just used a multi purpose vitamin)
- Soy Extract (we were using Soya Isoflavonoids which I think contains genistein which is meant to be good).
- Resveratrol 200mg
- Green Tea Extract ECGg 400 mg

- Silymarin

Stopped taking - should we take again?

- NAC N-acetyl cysteine– I noticed Cheryl Broyle was taking this but it is not on Stephen’s cocktail list.
- L-Tyrosine 500mg – I did not see this on any cocktail list but it is an amino acid which is meant to help with brain function.

Never started this but should we after the seizure? Can it interfere?:

- Disulfiram and he has not started this. 

Sensitization of cancer (stem) cells by Doxycycline to Vitamin C, Berberine, Chloroquine and others

Dear all,


I recently came across the below study, which I thought was rather interesting:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5620172/

The authors used incrementally higher dosages of Doxycycline (12.5 uM, 25 u.M, 50 uM) in vitro on cancer cells in an effort to create metabolically inflexible cells and to test whether these would be then be more sensitive to metabolic inhibitors, including natural agents (Vitamin C and Berberine) and various meds (Atovaquone, Irinotecan, Sorafenib, Niclosamide, Chloroquine, and Stiripentol).

The cancer cells in the study ended up being highly sensitized to some of these agents, for example Vitamin C (4-10 x more sensitive), Berberine and Chloroquine. It's noteworthy that, following Docycycline treatment, cells became sensitive to Vitamin C at a dosage level which is reachable orally (IC-50 = within the range of 100uM - 250 uM). My understanding is that newer Vitamin C formulations using oral Liposomal delivery (e.g.: https://www.livonlabs.com/cgi-bin/start.cgi/liposome-encapsulated/lypo-spheric-vitamin-c.html) can reach concentrations of up to 400 uM in the blood, a level at which cell elimination in vitro was in excess of 90%).

I'm curious if these results could be replicated at least directionally in a human setting, as it would be a rather cost effective and non-toxic approach. Any thoughts?

A few questions I'd have for example are:

1. Is this Doxycycline cell sensitization replicable in a human setting? If so, at what dosage?
2. Is there any chance an oral Vitamin C formulation (e.g. Liposomal) could replicate the effect seen in vitro? Alternatively, I presume IV infusions would do the job?
3. Which of the other agents would be the most feasible otherwise?

Best regards,
John

Ukrain

http://www.fonteine.com/ukrain.html

Opinions about ukrain ? Seems to be effective in brain tumors.

Reposting on Milk thistle for liver protection

Reposting a discussion from Cancercompass (July 10, 2015, page 213) on milk thistle for liver issues.

• A: Has anyone had problems with liver while on the cocktail? My blood tests have just come back, Alt Sgpt jumped from 7 to 48 in just 10 days (with reference range 0-32). I googled and it says it shows liver damage. I was on chemo 6/29-7/5 and also started some cocktail meds on the 7/2.
• M: We have not experienced  elevation in liver enzymes.  If you are not taking a good quality Milk thistle product you might want to consider it.  Milk thistle, in particular the silymarin, is a potent hepatoprotective herb.  Typical dose is 300 mg tid with a product standardized to 80 percent silymarin.  You might want to consider a higer dose initially given your liver enzymes are elevated
• A: Thank you. I do take milk thistle, 500 mg/day
• M: I would bump it up to at least the total daily dose of 900 mg (300 mg tid) since that is considered a standard therapeutic dose for liver issues. 
• AB: Yup we have experienced elevated liver enzymes twice. Once when just on radiation and taking boswellia, curcumin, omeprazole.. then, the kidney and liver both were very high above normal. They said it was acute dehydration.. brought on by a rare reaction to the omeprazole. The liver totally recovered, the kidneys came back to normal, but just barely.
  Yesterday we got our latest blood labs. In just six days, the liver AST and ALT readings went from very goodl to the very top of the normal range. We all need to be aware that these changes can happen very, very quickly..
• M: ...Anyway, regardless of what the bottle says, take milk thistle three times per day.  That is the standard practice for dosing milk thistle for liver related issues. Of course higher doses once there has been an acute elevation of liver enzymes might prove beneficial.
• S: Berberine also protects the liver from toxic stress, at least in mice.
  http://astrocytomaoptions.com/supplements/
• MA: I´m taking A LOT of things, and my liver has been holding it very well.  I use 500mg berberine bid and 300mg silymarin also bid. Maybe you could bump up the doses a little bit to get in track!