inoperable brain tumors

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inoperable brain tumors

by Leonid on Tue Dec 19, 2017 12:02 AM

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Dear friends,

My sister has 3 kids (41
years) in May 2017 was diagnosed in Anoplastic multiform glioma.

Pathology report shows:
MGMT – Non methylated

IDH1 (R132) negativ (IHC)

PCR signal unmethylierte sequenz – positiv

PCR signal methylierte sequenz – negativ

ATRX: partieller Verlust (IHC)

H3K27M: negativ (IHC)

From August 2017 she got
Temodal for 3 months (7 days in, 7 days off).
growing continue.

In November she got Avastin +
Ironatecan
growing continue

December: just Avastin

Now she is getting:

Kepra 3000
Vimpat 100
Dexamethason 8 mg
Vitamin C, B, D
L-Carnitin+Lymphdiaral
Boswellia serrata
Unizink
Kytta Sedativu
RSO – 0,5 a day
Ajurvedic treatment

Plan to have Optune in 10
days.

So far we cant stop the
growth.

Can you please advice useful
protocol/treatment plan which can help stop tumor grow?

Many thanks  in advance.

Best regards,
Leonid 

RE: inoperable brain tumors

by ottoh on Thu Dec 21, 2017 05:23 PM

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Sorry to hear you are having trouble slowing it down. You might look into CBDoil and THC oils. I believe they can help. Do some research and see what you come up with. Good luck and God bless you and your sister. Aloha

RE: inoperable brain tumors

by StaceyinTX on Thu Dec 21, 2017 05:29 PM

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I'm so sorry to hear about your sister.

Please look into the ketogenic diet.  I have read of several success stories where it has cured brain tumors.

https://www.charliefoundation.org/ketogenic-therapy/therapie

https://www.dietdoctor.com/treating-brain-cancer-keto-diet

Prayers!

RE: inoperable brain tumors

by Kvuk17 on Sat Dec 23, 2017 09:27 PM

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Hi there, I’m so sorry, it’s a relentless and nasty disease. My son has a grade 4 GBM and takes Chloroquine, metformin and cimitidine every day to inhibit the tumours ability to feed off itself and to starve it of glucose. He also takes CBD Oil. At the last MRI, the tumour has shrunk. I pray you can find a cocktail combination that works, a multi pronged approach is needed for these tumours. Take care, Kirsty.

RE: inoperable brain tumors

by Leonid on Sun Dec 24, 2017 10:10 AM

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Dear Kirsty, Many thanks for your feedback. How long he took mention medicine before MRI shows that tumor shrink? Does your son took anything else? This feedback gives us a hope. Thanks Regards, Leonid

RE: inoperable brain tumors

by Kvuk17 on Mon Jan 01, 2018 10:33 PM

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Not long at all, he had only just finished Radiotherapy with a low dose of temozolomide.. The scan was straight after that. The drugs were all phased in gradually, one at a time. The cbd oil was started halfway through Radiotherapy. He also takes the following supplements : B17 Tumeric Probiotics Omega 3 Quercertin Milk thistle Selenium with vit E the CBD oil is taken under the tongue 3 times a day, it’s helped a lot with general health and appetite. I have to order the cimetidine from America (trade name Tagamet), The Metformin from a relative who is type 2 diabetic and the Chloroquine from an online pharmacy (trade name Avlocor). The tumour also showed signs of internal necrosis which is basically cell death. I hope that’s helpful! Kirsty.

RE: inoperable brain tumors

by mohit1291 on Tue Feb 27, 2018 06:18 PM

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Dear Leonid,

I'm extremely sorry to hear this. I hope your sister is keeping up well. Whilst GBM (or glioma cancer) is a deadly disease, there are ways to wage a war against it but it takes a hell lot of hardwork and perseverance. And as much as it is difficult for your sister to cope up with the cancer, it is equally difficult for you to accept the harsh reality. 

All this is coming from my heart because last year my mother (54 y/o) was diagnosed with GBM (Grade IV) which was inoperable and she was given a mere 3 months to live but I guess we were not ready to give up so easily. Its been over 9 months now and she is still holding up with no side effects.

And as they say - Where there is hope there is life, we quickly lifted ourselves up and swamped into the world of Internet, a journey of becoming the doctors only to save our mother or at least give her that very quality of life which she deserved. 

Summarised below is an exhaustive list of conventional treatments, alternative therapies, and diet/supplements we giving to our Mother. I hope this will help you. Having said that, I still consider myself an amateur in understanding the complexities that come whilst fighting against GBM. Therefore, I request all of you beautiful people connected on this platform to come ahead and share your EXPERIENCE/GUIDANCE/OPINION/SUPPORT and let us all wage a serious war against the Mighty GBM. 

Conventional Treatment (Till Date) : 

1) Radiation : 30 days - Check 

2) 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) - Check

Adjuvant Chemo Cycle 3 : 5 days (240 mg/day) - Due in March

Alternative Treatment (Till Date) : 

3) Dendritic Immunotherapy : 1st Infusion - Check 

Dendritic Immunotherapy : 2nd Infusion - Check

Dendritic Immunotherapy : 3rd Infusion - Check

Dendritic Immunotherapy : 4th Infusion - Check 

Dendritic Immunotherapy : 5th Infusion - Check

Dendritic Immunotherapy : 6th Infusion - Due in March

Note : Tetanus Injection was given prior to every Infusion to boost immunity and activate immune cells in body. 

4) Valganciclovir dosage : 450mg x 4 / day (to fight off the CMV virus) - Ongoing 

5) Homeopathy protocol by Dr Prasanta Banerjee : Ruta 6, Calcerea Phos 3x/day - Ongoing

Natural Supplements (Till Date) :

1) IP6 & Inositol by “Cell Forte” : 2 capsules early Morning & 2 capsules Evening (Empty Stomach) - Total intake 3200 mg

2) 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) 

3) AHCC by “Kinoko Gold” : 2 capsules before Lunch and 2 capsules before Dinner - Total intake 2000 mg

4) Coriolus Versicolor by “Mushroom Science” : 2 capsules early morning and 2 capsules before Dinner - Total intake 2000 mg

5) Boswellia Extract by “Now Foods” : 1 capsule after lunch and 1 capsule after dinner - Total intake 1000 mg

6) Berberine by “We Like Vitamins” : 1 capsule after lunch and 1 capsules after dinner - Total intake 1800 mg

7) Quercetin and Bromelain by “Now Foods” : 2 capsules before lunch and 1 capsule before Dinner - Total intake 3000 mg

8) Goldenseal Root by “Nature’s Way” : 2capsule after lunch - Total intake 1200 mg

9) Reishi Mushroom Extract by “Boostceuticals” : 2 capsules after lunch - Total intake 900 mg

10) Maitake D Fraction pro by “Mushroom Wisdom” : 2 ml everyday

11) Omega 3 fatty acids by “Nutrilite” - 2 capsules anytime during the day 

12) Grape Seed Extract by “GNC herbal plus” - 1 capsule anytime during the day 

13) Green tea Extract by “Life Extension” : 1 capsule anytime during the day

14) Vitamin D3 by “Solgar” :  1 capsule anytime during the day

15) Selenium by “Nature’s Way” :  1 capsule anytime during the day

16) L-optizinc by “Now Foods” :  1 capsule anytime during the day

17) Resveratrol by “Relentless Improvement” :  1 capsule anytime during the day

18) CoQ10 by “aSquared Nutrition” : 2 capsules anytime during the day - Total intake 800 mg 

19) Milk Thistle by “Puritans Pride” : 2 capsules anytime during the day - Total intake 2000 mg

20) Borage GLA-240 + Gamma Tocopherol by "Jarrow Formulas" : 2 capsules after Dinner - Total intake 2000 mg

Allopathy (Till Date) : 

1) Dexamethasone : 2 mg morning and 2 mg night (Maintenance Doze)

2) Valproic Acid : 500 mg morning and 500 mg night (To avoid Seizures) 

3)Citadep S : 1 tablet before sleeping (Anti-Depressant recommended)

4) Chloroquin : 1 tablet of 250 mg after any meal (reduce side effects of chemo)

5) Metformin : 500 mg during lunch and 500 mg during dinner ( Because Mum’s Diabetic) 

6) Calcium Tablets, Vitamin C and other Multi-vitamins : Anytime during the week

7) Cremaffin/Looze syrup : 3 tablespoons before sleeping (To combat constipation)

8) Emeset : 1 tablet of 4mg to be given right before taking Temozolomide tablets (To avoid vomiting)

NATUROPATHY/Special Diet (Till Date) : 

1) 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. 

2) Gotu Kola (Asiatic Acid) by “Narayani Naturals” : 1 big tablespoon twice daily consumed via juice or tea or mixed with water. 

3) Cold Pressed extra virgin organic coconut oil : All food cooked in this oil. 

4) MCT Oil : to be mixed in dressings/salads or consumed neat (2 tablespoons per day).

5) Flax seed oil : All salad dressed with this oil. Stir fry cottage cheese with flax seed oil and eat twice/thrice every day.

6) Seeds Platter : Flax Seeds, Chia Seeds, Nigella Seeds

7) Raw Bitter Apricot Kernels : 10 kernels twice daily before meals (Total 20 kernels).

8) Maximum intake of raw veggies/fruits especially veggies with high alkaline levels like kale, spinach, broccoli, bell peppers etc. 

9) 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. 

10) 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 and Feet Palms.

11) Mix frankincense and Mellisa oil (6 drops each) in a diffuser every night before sleep.

12) Drink 1 tablespoon on Raw Bitter Apricot oil by “Purearth” every morning empty stomach. 

13) Stay positive 

Sorry, this got stretched way too much but everything I wrote above poured directly from my heart.

Stay Positive and NEVER LOSE HOPE :-)

Regards,

Mohit Chhabra

RE: inoperable brain tumors

by KB-Austin on Fri Mar 16, 2018 02:31 AM

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My husband has an IDH-wildtype glioma that is basically acting like a GBM.  Where are you getting these treatments approved?  Need to talk to my insurance company or just find out where to purchase some of these products.  I do believe everyone is different, and every "cocktail" needs to be custom made for the patient and their chemistry.   Thanks for the info.

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