Loading...

apenrod's Message Board Messages

Loading...
Showing 1 - 10 of 10

Page 1 of 1

http://btcocktails.blogspot.com/

and

https://virtualtrials.com/pdf2017/treatment_options_gbm_2017

I found these to be the most helpful in looking at what to put my mom on and helped to figure out the dosages. Hope this is helpful to you.

Adenovirus and GBM

by apenrod - August 29, 2018

Has anyone tried the new treatments using the adenovirus (DNX-2401) and pembrolizumab or anything similar? How were the side effects?  Any information would be great. Thanks.

We are doing a modified version of a cocktail approach based on his ideas and what is going on in clinical trials. There is a good site called the Musella foundation that has up to date stuff from Ben on there to know more about it. Also he is alive and has conversed with my aunt about some different questions. He takes a while to answer but if he can he will write back. He has gotten older and does have issues from aging but is still very sharp. Hope this helps!

On Jan 30, 2018 8:58 PM Kvuk17 wrote:

Sorry, yes it was partly on this thread and other sources that I read about taking it daily. Have you searched on this forum for “cocktail approach”? It was a guy called Rich that was advising everyone. It’s probably quite an old thread now. I’m going to look into that mushroom thing, sounds interesting!

Yes he was a great starting point for me to research from. I was really glad he took the time to do that. I have seen across the board people using the mushroom extract so I hope it helps you guys also.

On Jan 20, 2018 11:55 AM keepthefaith12 wrote:

Hi Ashley,

Have you read "Treament options for Glioblastoma and other Gliomas" by Ben William? It's a really healpful source that summarizes many kinds of treaments as well as supplements, it's available on VirtualTrial. If you haven't, I highly recommend it and also his book "Surviving Terminal Cancer". It's like a good starting point.  

My mom had just finished 30 radiation treatments together with oral Temozolomide. The size of the tumour after the surgery was 41x49mm. After the radiation together with oral chemotherapy and supplements, the size of the tumour is now 36mmx26mm. She will continue to take Temolozomide and the supplements I bought and have monthly check up. She doesn't seem to have negative reaction to the supplements so far and because the tumor is still there, we're very cautious but at the same time have more hope as it shrinks.  

Does your mom oncologist prescribe her any nutritional supplement? My mom's oncologist gave her Lipidem Emulsion by Braun which contains mainly Omega 3 and Soy-bean oil for about 14 days during the radiation. 

Supplements she's been taking so far, daily dosage:

+ Omega 3 (3,000mg): very helpful source of fatty acid that even my mom oncologist precribed her, she takes 3,000mg a day if not taking lipidem. When on lipidem, she only took 1000mg/day.

+ Selenium: 200mcg - to maintain selenium in her blood level

+ Boswellia: 1,800mg - to support treament of brain edema 

+ Melatonin: 15mg - 1 hour before bedtime, this helps her a bit with her sleep and there many researches which show it boosts cancer patients' stamina during their treatments. 

+ Coriolus mushoom: 1,200mg - a very helpful supplement incorporated into cancer treatments in asian countries. 

+ Lycopene: 20mg - many sources show it's a good supplement to protect healthy cells during radiation

+ Berberine: 150mg - researches show this has something similar to chemicals used in chemo for Glioblastoma.

+Silibinin (Milk Thistle): 1,500mg - researches also show it inhibits tumour growth together with liver detoxifying effects. 

+ Sulforaphane: 500mg. 

+ Garlic extract: 1,000mg

Now my mom is home, taking oral Temolozomide and I added some more supplements into her daily routine:

+ Fresh green tea

+ Pomegranate extract as a source of Ellagic Acid.

+ Resveratrol 

I hope this helps even just a bit. Good luck with everything to your mom and your family. Keep us update. 

Kind regards,

Binh

Hi Binh,

I have read that paper by Ben Williams and his book. Unfortunately his cancer was very receptive to treatments and is very different than my mothers tumor so i'm trying to weed out things that he now feels aren't helpful.   Our oncologist is very strict to the standard of care and doesn't advocate use of any other treatments. On supplements he just wanted us to make sure we watched antioxidants.   Our supplement list is very similar to yours.  We actually went to a cancer nutrisionist who helped us figure out the best dosages during radiation etc. i'm glad to hear she isn't having negative side effects as that is what i'm most concerned about.  Have you looked into using Chloroquine, Metformin or Disulfiram?

On Jan 29, 2018 5:39 PM mohit1291 wrote:

Hi, I’m extremely sorry to hear about this. As a matter of fact, my mother (54 yrs old) also got diagnosed with GBM grade 4 in August 2017 which turned out to be inoperable. I have detailed out the entire list of treatments and protocol we have given and are giving her till date. I strongly believe that natural supplements really help in boosting one’s immunity and helping the body to fight off tumor cells on its own. Hope the below list will help. All the best xx Conventional Treatment (Till Date) : Radiation : 30 days - Check Chemotherapy TMZ : 42 days (120 mg/day) - Check Adjuvant Chemo Cycle 1 : 5 days (240 mg/day) - Check Adjuvant Chemo Cycle 2 : 5 days (240 mg/day) - Check Adjuvant Chemo Cycle 3 : 5 days (240 mg/day) - Due next month Alternative Treatment (Till Date) : Dendritic Immunotherapy : 1st Infusion - Check Dendritic Immunotherapy : 2nd Infusion - Check Note : Tetanus Injection was given prior to every Infusion to boost immunity and activate immune cells in body. Valganciclovir dosage : 450mg x 4 / day (to fight off the CMV virus) - Ongoing Homeopathy protocol by Dr Prasanta Banerjee : Ruta 6, Calcerea Phos 3x/day - Ongoing Natural Supplements (Till Date) : IP6 & Inositol by “Cell Forte” : 2 capsules early Morning & 2 capsules Evening (Empty Stomach) - Total intake 3200 mg Curcubrain by “Now Foods” : 1 capsule early Morning, 1 capsule before lunch, 1 capsule before Dinner - Total intake 5000 mg (including organic turmeric in diet) AHCC by “Kinoko Gold” : 2 capsules before Lunch and 2 capsules before Dinner - Total intake 2000 mg Coriolus Versicolor by “Mushroom Science” : 2 capsules early morning and 2 capsules before Dinner - Total intake 2000 mg Boswellia Extract by “Now Foods” : 1 capsule after lunch and 1 capsule after dinner - Total intake 1000 mg Berberine by “We Like Vitamins” : 1 capsule after lunch and 1 capsules after dinner - Total intake 1800 mg Quercetin and Bromelain by “Now Foods” : 2 capsules before lunch and 1 capsule before Dinner - Total intake 3000 mg Goldenseal Root by “Nature’s Way” : 1 capsule after lunch and 1 capsule after dinner - Total intake 1200 mg Reishi Mushroom Extract by “Boostceuticals” : 2 capsules before breakfast and 2 capsules before Dinner - Total intake 1800 mg Maitake D Fraction pro by “Mushroom Wisdom” : 2 ml everyday Omega 3 fatty acids by “Nutrilite” - 2 capsules anytime during the day Grape Seed Extract by “GNC herbal plus” - 1 capsule anytime during the day Green tea Extract by “Life Extension” : 1 capsule anytime during the day Vitamin D3 by “Solgar” : 1 capsule anytime during the day Selenium by “Nature’s Way” : 1 capsule anytime during the day L-optizinc by “Now Foods” : 1 capsule anytime during the day Resveratrol by “Relentless Improvement” : 1 capsule anytime during the day CoQ10 by “aSquared Nutrition” : 2 capsules anytime during the day - Total intake 800 mg Milk Thistle by “Puritans Pride” : 2 capsules anytime during the day - Total intake 2000 mg Allopathy (Till Date) : Dexamethasone : 2 mg morning and 2 mg night (Maintenance Doze) Valproic Acid : 500 mg morning and 500 mg night (To avoid Seizures) Citadep : 1 tablet before sleeping (Anti-Depressant recommended) Chloroquin : 1 tablet of 250 mg after any meal (reduce side effects of chemo) Metformin : 500 mg during lunch and 500 mg during dinner ( Because Mum’s Diabetic) Calcium Tablets, Vitamin C and other Multi-vitamins : Anytime during the week Cremaffin/Looze syrup : 3 tablespoons before sleeping (To combat constipation) Emeset : 1 tablet of 4mg to be given right before taking Temozolomide (To avoid vomiting) NATUROPATHY/Special Diet (Till Date) : Ayurvedic Medicine by “Dr. Yeshi Dhonden” : He is based out in the foothills of Himachal Pradesh in a small town MCLEODGANJ. Given 4 different chewable tablets to be consumed everyday in a prescribed manner. We are following his protocol since the very first week of my Mum’s Dx. Gotu Kola (Asiatic Acid) by “Narayani Naturals” : 1 big tablespoon twice daily consumed via juice or tea or mixed with water. Cold Pressed extra virgin organic coconut oil : All food cooked in this oil. Flax seed oil : All salad dressed with this oil. Stir fry cottage cheese with flax seed oil and eat twice/thrice every day (Budwig Diet) Maximum intake of raw veggies/fruits especially veggies with high alkaline levels like kale, spinach, broccoli, bell peppers etc. Alkaline Water by “Alkalen” : 2-3 litres every day. We Keep a count of it as there a lot of medicines she consumed in a day. Essential Oils Therapy : Every night before sleeping Mix 6-7 drops of “Frankincense oil”, 6-7 drops of “Mellisa Oil” and 10-12 drops of “Coconut carrier oil” in a container and apply on * The tumor location on the head * Neck * Inside the nose * Hand Palms * Feet Palms Mix frankincense and Mellisa oil (6 drops each) in a diffuser every night before sleep. Drink 1 tablespoon on Raw Bitter Apricot oil by “Purearth” every morning empty stomach. Stay positive

Thanks so much and I'm sorry to hear about your mom also. That list is great. We are using many of the same supplements in our cocktail approach. Its great to see what others are doing to see if we can get closer to beating this crappy cancer.  :)

That is great that he hasn't had any side effects. Everything i'm reading in clinical studies are showing taking chloroquine only during radiation/chemo, i'm trying to figure out if its best to take daily or just in that period of time.  Was it mainly the cocktail thread you found this out at?  Those are all very similar supplements that we are using also. Have you looked into PSK (a mushroom extract used in Japan for cancer patients) also another one I found extremely promising was a boswellia extract.  I hope that this approach and divine interevention helps us continue to discuss our family members treatments and successes years from now :)

Kirsty,

I'm so sorry to hear you are going through this with your son. Have you guys noticed any significant side effects from the meds?  Also are you using a CBD oil with THC or just he plain hemp oil?  I will look into that thread more. Thank you!

Hi,

My name is Ashley. My mom was diagnosed with a stage 4 glioblastoma (unmethylated) on December 10th, 2017.  She is only 54. She had headaches for two weeks that worsened causing us to take her into the ED. She went into surgery the next day for a 4cm mass in her left parietal lobe. This disease as everyone know rocks your world I feel we are in an alter reality now.  I've been researching non stop what others are using and trying. I was curious if anyone has any experience using Chloroquine, cimetidine, verapamil and metformin for this disease. There are promising studies but was hoping for some personal accounts. Thank you.  It is truly inspiring to hear other people fighting this terrible fight and hopefully we will be able to beat the statistics.

Did you find out anymore on the use of supplements during radiation? I'm coming up with confliciting data back and forth. My mom was diagnosed on December 6th and started radiation and chemo one week ago. I want to give her the best chance at survival but I also don't want to hinder the radiation.

thanks,

Ashley

Showing 1 - 10 of 10

Page 1 of 1

Loading...

About apenrod

Caregiver, Researcher
Brain Cancer
Alternative Treatments, Cancer Diagnosis, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Conventional Treatments, Naturopathic Medicine, Radiation, Supplements

We care about your feedback. Let us know how we can improve your CancerCompass experience.