Hi everyone! Thank you for your advice, guidance and experience. I wish everyone a complete recovery!

My name is Kirill, age 33. I am looking for help and advice. On May 20, 2020, I had surgery to partially remove the neoplasm in the left temporo-insula.

Analysis results: A diffuse glioma with infiltrative growth into the brain tissue is revealed. The tumor is represented mainly by the astrocytic component, also a little oligodendrocytic and hemistocytic. Mitotic figures are noted. Cellular density is increased. Reactive endothelium is found in the vessels.

1. Anaplastic astrocytoma, WHO Grade 3
2. IDH1 R132 H - mutant
3. MGMT - unmethylated
4. Ki-67 up to 15%

There is no exact information, but surgeons estimate about 80-90% removal of the neoplasm. 

I had the following treatment:

1. Proton therapy course 6 weeks. Radiation quantity 60 GyE. Finished 08/25/2020. At the time, I had no information about additional treatment that you discuss on the forum, so I have not used the means for increasing the sensitivity of the tumor in radiation therapy.
2. Temozolomide 200 mg/m2 (in my case 350 mg). Standard schedule 5/28.

10/09/2020 – start of 1^st course

04/23/2020 – 8 course.

During chemotherapy, I ate large amounts of antioxidant foods (broccoli, berries, green tea, garlic, onions, parsley, etc.). I have a simple diet: whole grains, refusal of meat in favor of fish, refusal of sugars and simple carbohydrates, a lot of vegetables and fruits, greens. I also took: curcumine, boswellia, omega-3, lycopene, resveratrol. Daily walking at least 1 hour.

At the moment, a fairly large cyst has formed at the place of the surgery. MRI 03/09/2021 shows stable results, no positive nor negative changes. PET/СT 04/02/2021 shows relapse. The doctors asked for a second MRI to check. The doctors, as usual, are conservative and treat according to the protocol.

After such news, I immediately bought medicines and dietary supplements, which are recommended on the forum.

Medicines:

1. Levetiracetam
2. Fluoxetine
3. Mifepristone
4. Hydroxychloroquine
5. Metformin
6. Valaciclovir
7. Disulfiram
8. Minocycline
9. Atorvastatin
10. Mebendazole
11. Tamoxifen
12. DCA
13. Celecoxib

I would be grateful for your help, whether they suit me and how to combine them all.

Dietary supplements:

1. Berberine
2. Fungi Perfecti, Stamets 7
3. Fungi Perfecti, Host Defense Turkey Tail
4. Now Foods, EGCg, green tea extract, 400 mg,
5. Life Extension, optimized resveratrol
6. Life Extension Boswellia serrata
7. Curcumin SLCP
8. Now Foods, silymarin
9. Solgar, vitamin D3 5000 ME
10. Now Foods, ultra omega-3
11. Life Extension, Mega Lycopene

I really want the tumor to shrink. Thanks to your forum, I plan to:

1. Switching to the metronomic schedule Temozolomide, dose 70-80 mg / kg2. 3 weeks taking, 1 week off. Or without interruption if I have enough strength.
2. Add Levetiracetam, Fluoxetine, Disulfiram, Valproic Acid to reduce the effect of MGMT
3. Add Metformin for blood glucose control.

Thank you for your opinion and advice:

1. What medications can be added (or removed), in what dose and for how long should I take it?
2. Is it a good idea to add Agomelatine before taking Temozolomide on a metronomic schedule?
3. How do Levetiracetam and Fluoxetine interact, how and in what quantities is it better to take them together?
4. What do you think about Temozolomide + Tamoxifen at this stage? I am thinking about Tamoxifen, because for a year now I have a very high level of estradiol, always the very upper limits. I heard that it could somehow relate to a tumor. I also know that Ben Williams has been taking Tamoxifen on a regular basis. I know that Tamoxifen is not very friendly with Fluoxetine...
5. Please suggest a different scheme if you have different opinion.

If such a scheme does not bring the desired result, then I plan to take Lomustine. Since I heard that Lomustine may be useful in the case of Astrocytoma-Secondary glioblastoma independent of MGMT.

Thank you for your opinion and advice:

1. Do I need to add drugs that reduce the effect of MGMT? Maybe there is a better combination of Lomustine with other drugs? Or is Lomustine not the best option / combination?
2. What medications can be added (or removed), in what dose and for how long to take?
3. Please suggest a different scheme if you have different opinion.

What are your thoughts on having several different short courses of chemotherapy? Ben Williams drastically changed his schemes so that cells did not have time to mutate, adapt and survive.

• Maybe TMZ + Tamoxifen
• Then BCNU (Carmustine)
• Then Procarbazine, oral Lomustine (CCNU). This regimen is known as PC
• Then TMZ + ??? or Avastin + ???
• + Dietary supplements
• + in my case reduce the effect of unmethylated MGMT …

What combinations can fit in my case?

If there will be a second operation, what is the best way to build a more effective treatment with the information already available?

I think there may be several options:

A) Radiation therapy may be prescribed.

I will do the following:

1) Adjuvant therapy Temozolomide + reducing the effect of unmethylated MGMT (Levetiracetam, Fluoxetine, Valproic Acid + ???)

2) I will add drugs that will increase the tumor sensibilization to radiation therapy.

What exactly to add and in what doses in my case?

 

B) They may refuse the radiation therapy and prescribe chemotherapy.

What is the best way to start chemotherapy? Should I continue Temozolomide on the metronomic schedule or change something?

I have a great need to find a specialist, an experienced person with whom there could be a personal connection during treatment. Can you help with this, Stephen?

Also, I really want to help in the development of the project, how can I donate?

Thank you very much for your opinion and support.

P-Selectin Study

 A study that caught my attention with impressive results in vivo albeit mice. They inhibited the p-P-Selectin protein to achieve the results. I found many supplements in my research reducing P-Selectin (EGCG, Melatonin, Lipitor, Resveratrol, Boswellia, etc). What was interesting I found is all the drugs tied with P-Selectin all dealt with inflammation. Sure enough, I found diets such as the Paleo, Low Fat, and Mediterranean diets reduced P-Selectin. I also found a study that correlates P-Selectin to cholesterol levels (LDL) as well as inflammatory responses to exercise.

Study:

https://www.timesofisrael.com/israeli-scientists-stop-brain-tumors-in-mice-say-may-cure-a-deadly-cancer/?fbclid=IwAR0mxsbykw5w5mE33zAgUCO1x3cn6BRXAQjZ5Jb_F3w255JltJ60FcEhQNw

Diet impact:

https://pubmed.ncbi.nlm.nih.gov/11412051/

Impact of Edema:

https://pubmed.ncbi.nlm.nih.gov/10670575/

Exercise and LDL correlation of P-Selectin:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4590908/

Chloroquine supplies - help please

 Hello friends,

It seems to be that supplies of Chloroquine have now completely dried up in the UK (I'm not sure whether it is beause there is no international travel, Brexit is causing problems, or it has been bought up by those believing it offers COVID-19 protection). Can anyone please help me source it somehow? Happy to message privately. I have a grade III anaplastic astrocytoma, currently showing no growth following resection 18 months ago. I have been taking it continuously until the wholesaler told our pharmacy that they didn't have any more and didn't know when it was next due to arrive.

Any help would be HUGELY appreciated.

Stuart

doctorsjgf@gmail.com

Green tea differences ?

 Not sure whether there is any research looking into this but until recently I have been using Teavigo Green Tea Extract 90% EGCG, 30 Veg Capsules by Swanson but these have been out of stock. I have started taking a different preparation (which has higher EGCG): https://www.british-supplements.net/products/clean-green-tea-extract-polyphenols-916mg-catechins-748mg-egcg-420mg

But I wondered whether there was anything particular about the TeaVigo preparation that made it better for accessing the brain?

Best wishes all,

Our story/ 4years OS

 My husband was diagnosed in  September 2016 at 38 years with GBM IV in frontal lobe, 8cm diameter size. He lived 4 years and 2 months from diagnosis.

I remember over 4years ago I was desperatly looking for the cure for him, some knowledge and hope.

With my medical background I felt that we have to take risks, that with standard care we will get standard results  - this website was an incredible source of knowledge plus Ben Williams, plus Mustella fundation, plus Inspire forum. I want to share our story.

Subtotal resection on October 2016. GBM IV, Wild type, methylated. Then standard protocol temodal and radio for  6 weeks. 

Before radiotheraphy he was put on valproic acid 1g twice daily (without epilepsy). Right before radio he was in ketosis (not eating for 36h) and during Stupp protocol on very strict keto diet. During this time we add some repurposed drugs - metformin, chloroqinine, disulfiram, keppra, cimetidine, celecoxibum, alfadiol tried to decrease dexamethazone as much as possible. Boswellia, curcumin, green team from the very begining. 3 months after completing this protocol he had huge pseudoprogression - maybe due to all this stuff. But our oncology departament kept him on TMZ.

He also had immunotheraphy from Jan2017 - hypothermia and NCV then DCVax and later also Keytruda.

A lot of tiny steps. For example I was trying to find studies for which types of bateria types in gut microbiome the response for Keytruda is better and we were suplementing them. 

During first year he also started nasal inhalations with perillyl alcohol. Also ECCG hat. He tried DCA, Sativex.

He had over three years without signs of disease. He got back to his work.

Then Dec 19 progression- second surgery, stereotacitic radio, temodal rechallange, lomustine without good results.

I want to thank Stephen for his commitment and energy he put into this site and all of you who share experiences with this disease. 

I am in awe what human can bare and what a gift life is.

Thank you. 

Patricia

Mebendazole + temozolomide phase 1 trial results

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7817892/

Mebendazole and temozolomide in patients with newly diagnosed high-grade gliomas: results of a phase 1 clinical trial

This was a phase 1 safety and dose finding trial rather than an efficacy trial, but could be some useful info here.