Posted by: @almo

Hello all,

My husband was diagnosed with glioblastoma in August 2018, he has been having clean MRIs until now. Our protocol was: valacyclovir, chloroquine, mebendazole, doxycicline, metmorfine, berberine, revesratrol, melatonin, sertraline, ALA, Bromelain, Boswellia, Artemisia....find below:.

	SUPPLEMENT	mg	Obs	FIRST	BREAKFAST	LUNCH	DINNER
	Melatonin	20					1
	Whey Protein	2			2
	Probiótic						1
	Lions Mane	500				2
	Alpha-Lipoic Acid	600				1
	Bromelain	500		2
	Bosswellia Serrata	500			4	4	4
	Artemisia	500					2
	Coriolus-PSP	350			3
	Vitamina D3/MK-7/A	5000IU/500mcg/5000IU				1
	Berberine Sulfate	500				1
	Resveratrol w/ Quercetin,	200			1
	Ultimate Omega 3	2.000			1
	Lorazepam	1					1
	Sertralina	50					1
	valaciclovir (valtrex)	1.000					1
	chloroquine (resochin)	155				1
	doxycycline	100	one month on 3 off
	mebendazole (lomper)	100			1
	Metformin	500			1		1

He wasnt taking atorvastoine and curcumin because his lyver enzymes go high with them.

He has amplification in the following genes: EGFRVIII, MDM2, CDK4 and CCND2. IDH wild type and MGMT methylated

He is gonna have another surgery again but radiation is not possible because the tumour is at the same area than before.

I have been looking for next steps and found these options, I would like to know your opinion of which one would be the best:

 - Clinical trial with AMG596 for EGFRVIII: https://clinicaltrials.gov/ct2/show/NCT03296696?recrs=a&cond=Glioblastoma+Multiforme&cntry=ES&draw=2&rank=8

- Clinical trial with peptide vaccine in Spain: https://clinicaltrials.gov/ct2/show/NCT04116658?recrs=b&cond=Glioblastoma+Multiforme&cntry=ES&draw=2&rank=3

- Regorafenib chemo, there has been good results recently and it was supposed to be better than lomustine. https://www.ascopost.com/News/59603

- Cegat peptide vaccine. This option has a cost around 50.000 euro, it will be in Germany (we are in spain, so we will have to travel)

Please, suggestions are wellcome. Also we will have to add more off label....

Thank you!

Dear Almoraima,

I will study the different options and try to give my opinion.
The first thing would be to try the greatest resection if this is possible.
I find Regorafenib interesting, what I have in the list of possible additions.
I would add tamoxifen in high doses, sodium phenylbutyrate. If you rule out regorafenib, you would try some lomustine cycles if blood counts allow it.
I will try to take time to expand information.

Kind regards

@manuone

Hi Manu,

Please, tell me what is the dose for tamoxifen. Obsviously i wont have a prescription and the only website i know where i can get it is alldaychemist. ¿Or is the another website?

It is the first time i hear about sodium phenylbutyrate, ¿where can i get it? ¿are in pills?

Thank you!

@almo

Hi Almo,

5 grams of phenylbutyrate may be fine (inside cocktail) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1871887/
Tamoxifen has been used in high doses of 200mg / day. This can cause some thrombus that could perhaps be managed with small doses of aspirin and long walks.
https://virtualtrials.com/Tam1.cfm
You may "ask" to find a "sensitive" pharmacist who agrees to sell you drugs without a prescription.
Sodium phenylbutyrate I bought quality and trust from China a long time ago here:
[email protected]

kind regards

before anything id do all the vaccinations possible to keep immune system alright

https://www.medicalnewstoday.com/articles/327452

https://www.sciencedaily.com/releases/2019/08/190805134003.htm

unfortunately there nothing else ive heard of apart salinomycin, (im not sure it can help you)

Note that I don't have any experience with this cancer, but its all I could think

Found this article too that zika virus triggers immune response needed to destroy this cancer, then researchers developed zika vaccine its on clinical trials. https://www.medicalnewstoday.com/articles/323096

I wish you all the best please remember I don't have experience but I have read 10 years about medicine.

thank you for your answer @aili

Hi Almo

I cam across this site today (never used their service and got no references so far):

https://med.uth.edu/pathology/clinical-services/consultative-proteomics/

afaiu, they do biopsy analysis (not a shallow one as Foundation 1 does) and identify drugs that most likely will be useful for treatment. 

Appreciate if someone can share own experience with this lab as i can probably contact them as well.

there are 2 articles on silver np. i can't suggest to try it, but in case if you are interested in in-vtiro research:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2759918/pdf/1471-2121-10-65.pdf

"Anti-proliferative activity of silver nanoparticles"

Results: Normal human lung fibroblasts (IMR-90) and human glioblastoma cells (U251) were
exposed to different doses of Ag-nps in vitro.

Ag-np treated cells exhibited chromosome instability and mitotic arrest in human cells.

There was efficient recovery from arrest in normal human fibroblasts whereas the cancer cells ceased to proliferate. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4598217/

Silver nanoparticles (Ag-NPs) can enter the brain and induce neurotoxicity. However, the toxicity of Ag-NPs on the blood–brain barrier (BBB) and the underlying mechanism(s) of action on the BBB and the brain are not well understood.

Lycorine inhibits glioblastoma multiforme growth through EGFR suppression

https://jeccr.biomedcentral.com/articles/10.1186/s13046-018-0785-4

Posted by: @johan

Lycorine inhibits glioblastoma multiforme growth through EGFR suppression

https://jeccr.biomedcentral.com/articles/10.1186/s13046-018-0785-4

Since, in GBM, EGFR gene is the most frequently mutated oncogenic driver this study could be of interest:

Morinda citrifolia Leaf Extract Suppressed Metastasised Cancer Progression via EGFR and MAPK Pathways

https://www.researchgate.net/publication/317147339_Morinda_citrifolia_Leaf_Extract_Suppressed_Metastasised_Cancer_Progression_via_EGFR_and_MAPK_Pathways

"The 300 mg extract/kg body weight was more effective than the 50 mg Erlotinib/kg body weight in suppressing the lung and liver tumor metastasis. The extract inhibited the cancer aggression by interfering with epidermal growth factor receptor and mitogen-activated protein kinase carcinogenesis pathways, and suppressing proliferation, tissue remodelling, and angiogenesis without any observable side effects at the given dose."

Posted by: @almo

Hello all,

My husband was diagnosed with glioblastoma in August 2018, he has been having clean MRIs until now. Our protocol was: valacyclovir, chloroquine, mebendazole, doxycicline, metmorfine, berberine, revesratrol, melatonin, sertraline, ALA, Bromelain, Boswellia, Artemisia....find below:.

	SUPPLEMENT	mg	Obs	FIRST	BREAKFAST	LUNCH	DINNER
	Melatonin	20					1
	Whey Protein	2			2
	Probiótic						1
	Lions Mane	500				2
	Alpha-Lipoic Acid	600				1
	Bromelain	500		2
	Bosswellia Serrata	500			4	4	4
	Artemisia	500					2
	Coriolus-PSP	350			3
	Vitamina D3/MK-7/A	5000IU/500mcg/5000IU				1
	Berberine Sulfate	500				1
	Resveratrol w/ Quercetin,	200			1
	Ultimate Omega 3	2.000			1
	Lorazepam	1					1
	Sertralina	50					1
	valaciclovir (valtrex)	1.000					1
	chloroquine (resochin)	155				1
	doxycycline	100	one month on 3 off
	mebendazole (lomper)	100			1
	Metformin	500			1		1

He has amplification in the following genes: EGFRVIII, MDM2, CDK4 and CCND2.

He is gonna have another surgery again but radiation is not possible because the tumour is at the same area than before.

I have been looking for next steps and found these options, I would like to know your opinion of which one would be the best:

 - Clinical trial with AMG596 for EGFRVIII: https://clinicaltrials.gov/ct2/show/NCT03296696?recrs=a&cond=Glioblastoma+Multiforme&cntry=ES&draw=2&rank=8

- Clinical trial with peptide vaccine in Spain: https://clinicaltrials.gov/ct2/show/NCT04116658?recrs=b&cond=Glioblastoma+Multiforme&cntry=ES&draw=2&rank=3

- Regorafenib chemo, there has been good results recently and it was supposed to be better than lomustine. https://www.ascopost.com/News/59603

- Cegat peptide vaccine. This option has a cost around 50.000 euro, it will be in Germany (we are in spain, so we will have to travel)

Please, suggestions are wellcome. Also we will have to add more off label....

Thank you!

Hi Almo, 

First of all I hope you find a "solution" or a way to gain time with your wife's GBM. Such a bummer of disease we have to fight, one could said the worse of all...

I'm from Spain too and my mother sadly is on the same situation as your wife. I was looking for the next steps as we have a confirmed regrown in the last MRI of last week. 

Do you finally decided to go with a clinical trial? I see two that may be interesting, one that use SurVaxM in Cleveland, the one that you mention in Val'hebron un Barcelona Spain with a multipeptide vaccine, and the CeGat. 

I'm quite confuse about the CeGat option, not only for the price, which you can expect on something like this, but because I didn't find references online about clinical trials on their solution. Did someone know if they are "legit" and their vaccine at least worth the 50K?

Best regards. 

@poteck Hi! we have had delays because of Covid, but my husband has had since recurrence a surgery, SRS (radosurgery) and next friday we will get the MRI results and we will have to decide chemo or clinical trial.

I have been in contact with Cegat and Val`hebron. If you want we can talk by wasap of face messenger and i will let you know my opinion (it is too long to explain in english).

Regards

@almo

Thanks Almo, please sent me an email to sir_poteck at hotmail com to exchange our mobile in private. Thanks

@almo

Dear Almo, if it's easier for you give me your email and I 'll contact you. 

Thanks

Regards