Questions on my mom's drug cocktail(GBM Patient)

Hi folks/Stephen,

My mom was diagnosed with Glioblastoma(GBM) in September 2017. Following is the details of her GBM:

Her last scan was 6 months back and showed no growth, choline elevation or perfusion. We're yet to get another scan done in a few days from now.

She has been on the following supplements for almost the past three years. She started Chloroquine and Valganciclovir a year back. I had the following questions to ask, would be great if you can help me with the answers:

1. Is it safe to take these supplements for such a long duration? Are there any supplements that you would suggest that need to be stopped/paused? My concern is specifically with supplements like Valgancyclovir and Chloroquine, given the fact that they are not naturopathic/nutritional supplements?

2. Is there any supplement that you would suggest adding to my mom's drug cocktail? I've shared details of my mom's biopsy/genetic mutation below my mom's supplement list.

3. Are there any doctors/integrative oncologists that you would suggest consulting? I have been consulting Patrice Surley so far for my mom's treatment beyond the standard of care.

Supplements

Supplement	Cap count per day
Boswellia Serrata 500 mg	8
Keppra 500 mg	2
Chloroquine Phosphate 250 mg	1
Valganciclovir 450 mg	1
Curcumin + Piperine 1 g	4
Longvida 400 mg	2
Metformin 500 mg	3
Quercetin 865 mg	4
Resveratrol 200 mg	2
Bromelain 500 mg	6
Reishi 1g	2
Artemisia 1 g	2
Ashwagandha 500 mg	1
Selenium 200 mcg	1
Vitamin A + D + K2 - 5000 IU	1
Molybdenum Glycinate 1g	1
Celebrex 200 mg	2
Green tea extract 500 mg 40% EGCG	2
Juice from 5g of Ginger	1
Garlic 2 cloves	3

Details of the genetic mutation of my mom's tumour

Following are the details from her biopsy

IDH1 and IDH2: Not detected
CHR 1p and CHR 19q: Negative for CHR 1p and CHR 19q codeletion
Methylation: Detected
Ki67 labelling index is 15-20%

Following is her FoundationOne report:

Genomic Alterations Identified
EGFR A289V – subclonal, amplification, EGFRvIII
PTEN I67T
CDKN2A/B loss
TERT promoter -124C>T

Additional Findings
Microsatellite status MS-Stable
Tumor Mutational Burden TMB-Low; 3 Muts/Mb

Additional Disease-relevant Genes with No Reportable Alterations Identified†
IDH1(-ve)
PDGFRA

Following is the diet and supplements that my mom is taking:

Diet: Ketogenic Diet/Low Carb high-fat diet

I look forward to hearing from you all!

Avastin alone?

Further to a recent previous post.

3 months of TMZ 5/23 showed that chemo is not working for unmethylated GBM. The tumor is very active according to MRI comparison between July and September 2019. There was alot of swelling which is currently being reduced with 16 mg steroids per day in the past week. Speech has improved alot with this. Was told it is too close to previous radiation or surgery to have either done again.

2 weeks ago clonazepam was prescribed 10mg x 2 and Keppra increased to 1500mg x 2 and Phenytoin 300mg in the morning -  all of this is keeping seizures, twitches and focal seizures away.

Oncologist is going to start IV Avastin today and stop all treatment - asked if it was pallatiative but answer no it is not pallatiative treatment yet. Thought it was unusual to go ahead with Avastin by itself and not combine it with another chemo treatment such as lomustine?

Have been following cocktail since during radiation treatment back in April 2019 which I posted about in previous post. This includes daily chloroquine (155mg active ingredient); celebrex 200mg; metformin 500mg x 2; Atorvastatin; ramipril; ranitidine 75 mg; mebendazole; melatonin 20mg.

Also the usual daily supplements of mulitvitamin; 16 strain Probiotics; PSK; Maitake D; ; Mushroom supplement mix for brain (lions mane 300mg; bacopa 250 mg; reishi 150 mg; gotu kola 130 mg; ginko 120 mg); curcumin (longvida); vitamin D; ECG; Milk Thistle; Berberine; Boswellia; Resveratrol; Omega 3-6-9; Soy Falvonoids (geinistein)

Wondering if anyone has any experience of just Avastin being prescribed? I am wondering what is even the point in doing avastin alone? Appears to have more side effects and very little extra benefits, or OS? I was optimistic that Richard Geiber had Avastin and low dose TMZ but that doesnt seem to be on offer to us? Or any chemo alternative?

Very disappointing TMZ stupps protocol + cocktail did not seem to work. 

Reviewing my mom's cocktail after 18 months of progression free survival

Hi folks/Stephen,

We had my mom's MRI about a month back, and her last MRI showed no growth of the disease, had no choline elevation(in the spectroscopy report) and didn't show perfusion either. She had a gross total resection and was diagnosed in Sep 2017.

She has completed her radiotherapy, 3 cycles of temozolomide and 6 cycles of lomustine+temozolomide. We moved to the Lomustine + Temozolomide protocol because her disease was methylated.

I'd like to get my cocktail reviewed from all of you, and want to know what are the next things that I should consider adding/updating on my cocktail so that things stable. I'd like to be prepared on what I should do next, and be prepared for a recurrence:

Following is my mom's current cocktail:

Diet: Low Carb High Fat/Ketogenic Diet

Supplements:

Supplement	Cap count
Boswellia Serratta 500 mg	8
Keppra 500 mg	2
Curcumin + Piperine 1 g	4
Longvida 400 mg	2
Metformin 500 mg	3
Quercetin 865 mg	4
Resveratrol 200 mg	2
Bromelain 500 mg	6
TMG 1 g	3
Reishi 1g	2
Mebendezole 100 mg for 3 months + Doxycycline 100 mg for 1 month (We have skipped the statins from the care oncology protocol fearing it might be too heavy on her liver)	1
Artimisia 1 g	2
Chloroquine 250 mg	1
Ashwagandha 500 mg	1
Selinium 200 mcg	1
Vitamin A + D + K2 - 5000 IU	1
Molybdenum Glycenate 1g	1
Celebrex 200 mg	2
Green tea extract 500 mg 40% EGCG	2
Marrow Plus	6
Echinisea 500 mg	3
Astragalus tea 3g	1
Juice from 5g of Ginger	1
Garlic 2 cloves	3

Following are the details from her biopsy

IDH1 and IDH2: Not detected
CHR 1p and CHR 19q: Negative for CHR 1p and CHR 19q codeletion
Methylation: Detected
Ki67 labelling index is 15-20%

Following is her FoundationOne report:

Genomic Alterations Identified
EGFR A289V – subclonal, amplification, EGFRvIII
PTEN I67T
CDKN2A/B loss
TERT promoter -124C>T

Additional Findings
Microsatellite status MS-Stable
Tumor Mutational Burden TMB-Low; 3 Muts/Mb

Additional Disease-relevant Genes with No Reportable Alterations Identified†
IDH1
PDGFRA


MY QUESTIONS

1. Has any one of you gone beyond 6 cycles of lomustine+temozolomide? How was your experience like, if you did? Because my mom's scans have been stable - the chemotherapy along with the supplements have definitely been working.

But because my mom's WBC counts have constantly been low(between 2-3k), and she gets affected by even the slightest of the infections - I'm not sure if I should go beyond the 6 cycle mark.

2. Should I consider adding anything, or updating anything in the current cocktail?

I have the following supplements that I plan to add:

- Low dose Naltrexone
- Valcyte(She was positive was CMV in her blood a a year back)
- Ruta 6 and Calceria Phos

Any other supplements that you would consider adding, which you think are high priority ones and that I've missed out on?

3. Are there any clinical trials/additional treatments that you would suggest doing beyond the current line of treatment that we currently are on? 

4. The next important step that we want to consider is immunotherapy/dendritic cell therapy. Which places in your opinion are the best places that we should consider for immunotherapy? My mom's tumor is stored in formalin/paraffin, sadly.

5. Which are the doctors that we should consider speaking to next for an integrative approach to the disease? We are already in touch with Patrice Surley for naturopathic supplements. Would love to know about more doctors who you've had good experience speaking to, and how they can help.

I look forward to hear from you all!

I am quite ashamed for sending this much posts and I promise to make them less. Just want check the cocktails now that we are ending the radio+tmz parts and ask what should be replaced in the following one month off. 

My father is taking these along with 120 TMZ and most of these had been added after the blood test:

6 boswellia wokven

3 longvida

1 melatonin 5 mg (this might become 2)

2 milk thistle (150, standardized to 80 %)

2 metformin 500 (i.e 1000 mg)

3 ranitidine (Just to support  his weak stomach. He took Cimetedin 600 mg for more than a week and then I was afraid...because of Metformin)

1 valporate sodium 500 mg

2 cotrimoxazole (as you guess prescribed by ON)

Still damn 4 mg dexa

He would makes suicide if I add even one more pill now, so I will wait for replacing kepra with valproate and maybe getting rid of cotrimaxazole would give us more room..

His blood test 10 days ago shows these factors to be low:

 W.B.C 3.7

R.B.C 3.54

HGB 12.4

HCT 35.7

1- Do you think adding this MRM Veggie protein is of any help or is it more harmful? So far, that’s what I could find here but if you could suggest any powdery thingy that include those rare blueberry’s stuff, etc. I would be really thankful and I will order it asp.  

https://www.luckyvitamin.com/p-345652-mrm-100-all-natural-veggie-protein-powder-with-superfoods-chocolate-20-1-oz

2- I will try to add vitamin d3 and maybe a bit of Iron thingy after finishing this round. something else you recommend? 

Hi to everybody. My 69-year-old mother was diagnosed with glioblastoma in december 2018. We realized that she was missing a few words in reading, writing and talking and having constantly headache. It was operated on 12/27/18, when approximately 90% of a tumor was removed. She never had any seizures. After the surgery she had a considerable improvement in writing and reading and did not fell any more headaches, despite having presented a little tremor in her hands. Radiation therapy started on 01/23/1919 and was fractionated in 15 sessions. The first cycle (21 days) of temodal (temozolamide - TMZ) chemotherapy was started on 05/02/19.

Since the surgery she has been taking:

- Omeprazole
- Pure (she has hypothyroidism)
-Paroxetine
- Depakene 500 mg twice a day
-dexametazone just one per day
zolpidem

and supplements:
- magnesium chloride
-D vitamin 10,000 cu
- curcurum (curcumin)
-Omega 3
metatonin (15) at night

started recently:
resveratrol
1 clove garlic, raw

and will start:
-Beta Glucan
-artemisinine
-genysteine
sibyllin


We are thinking of associating acetatalozamide with the next cycles of temozolomide.

I would like you, or someone, to evaluate, and please and if possible make some comments and suggestions.

Note: We have not taken the MGMT exam yet.

thanks in advance

advices on cocktails and corticoids

My father in France - 71 years old - has been diagnosed with a GBM grade IV in September 2018. Before that he has always been in good shape and was very sportive.
He has 3 tumors from 10mm to 40mm and seems to be inoperable. He already had 3 sets of TMZ and he is taking already some supplements I recommended based on my researches on Internet. 
Here is his complete current treatment started 1 month after first diagnosis (time to perform biopsy) :

Temodal	3 cycles of 5 days done
Corticoids - Solupred	50 to 60 mg / day
Cannabis suppositories	1g / day (80% THC)
Chinese herbs and mushrooms (including Artemisia Annua)	every day
Vitamin C	5g / day
Nutraexpert Lipo HCA dietary suplements containing:
HCA	1500 mg / day
Alpha Lipoic Acid	1600 mg / day
Capsicum	112 mg/ day
Quercetin	45 mg/ day
Ginger	46 mg/ day
Whey	47 mg/ day
Green tea	30 mg/ day
Nicotinamid	20 mg/ day
Vitamin D3	25 µg/ 1000 UI
Ketogenic diet
Curcuma (Longvida) : added last week	1g / day

Biopsy revealed :

• IDH1 : negative
• FGFR3 : negative
• P53 protein : 15 - 20%
• no information on MGMT

MRI performed early december has show a slight size increase in the 2 biggest tumors, the oncologist says it is not alarming as the treament started one month after first diagnosis.
Currently my father resists well and tries to keep daily walking activity. Next MRI will be next month. 

I just recently discovered the cocktail approach and your blog and I have some questions.

1. It seems many patients are taking Melatonin 20 mg/ day (forbidden in France at this dosage by the way) and that it could be of good help : sustains the immune system, anti-oxidant, anti inflammatory, leads to cancer cells suicide ... Should I add Melatonin to the treatment ? It seems also that Malatonin is non compliant with corticoids as it inhibits corticoids effects : what do you think ?

2. More globally I fear corticoids may have a negative impact on the different supplements. Is there a mean to sustitute it by anything else ? Is Celebrex an option ? If so at which dosage ? (the inflammation is still important, but decreasing).

3. Would you have any recommandation in other supplements or drugs ? PSK mushroom, Valpoic Acid, Metformin? 

Thank you very much for your precious help.

Hello Stephen and all,

We have finally received the MGMT status of my aunt's tumour, it is methylated. Now waiting on EGFR amplification, which Princess Margaret in Toronto said they would test for as part of her participation in the marizomib clinical trial.

Grade IV Glioblastoma

• idh(-) wildtype, ATRX(+), GFAP(+), p53(+)
• The ki67 proliferation status is estimated at 10%
• MGMT status: Methylated

I tried to come up with what I think is a list of the drugs with the most potential to put in a cocktail for my aunt. I do not want to overwhelm her with tons of prescription pills…so trying to keep it on the smaller side right now. I also do not know how much difficulty we will have in obtaining the prescriptions (mainly chloroquine given its use primarily with Malaria).

She is already taking:

Imipramine 25mg – should we consider switching this to Chlorimipramine?

Atenol 50mg

Hydrochlorothiazide 25mg

Apo-Phenytoin 300mg – this is her anti-seizure med

Co-Ranitidine 150mg

PMS-Dexamethasone 4mg

Not sure if any of these have any benefits in cancer treatment, perhaps Imipramine?

Wondering if we should ask to switch to Keppra or Depatoke for anti-seizure?

She will be starting a Ketogenic diet today, and her treatment of concurrent TMZ and Radiation will begin in about a week once we find out if she will receive Marizomib as part of the trial.

Is there anything you would suggest I add or remove?

I am still looking into the dosage of cannabis oils.

Drug	Dosage
Valproic Acid (Depatoke)?? OR Levetiracetam (Keppra)	1000mg
Chloroquine	250mg daily
Cimetidine (Tagamet)	800mg daily
Celebrex	200-400mg daily
Fluoxetine (Prozac) Not sure if this would be helpful since she is methylated?	40mg daily
Metformin	500mg
Chlorimipramine	25mg daily escalated to 150mg daily

Supplement	Dosage
Boswellia (Wokvel Brand)	500-1000mg
Green Tea or Extract	700 mg 40% EGCG
Curcumin (Longvida) (AOR Brand)	2000mg +
Berberine	500-100mg daily (divided doses)
Melatonin	10-20mg
Omega 3 Fish Oil	TBD
Probiotic	TBD
Vitamin D3	5000-10,000 UI
Maitake D-Fraction (mushroom)	100mg
Reishi mushroom extract	1g  per day
Turkey Tail - ie PSK (mushroom)	3000mg
milk thistle	1000-2000mg
CBD / THC	200 mg THC 200 mg CBD 50 mg THCa

Thanks for your help,

Palma