Friday, 18 September 2020

Lab study points to ketogenic diet as not effective for slowing glioblastoma growth?

 I spotted this, and wondered whether there are any implications for the theory that ketogenic diets can help stop glioblastoma tumours growing?

Although it's only on cells and mice, it doesn't look good for the ketogenic diet...

Glioblastoma Utilizes Fatty Acids and Ketone Bodies for Growth Allowing Progression during Ketogenic Diet Therapy


Wednesday, 16 September 2020

18 year old APXA 2nd recurrence after treatment, immunotherapy optivo with radiation next week

 Hello and thank you for creating and adding me to this blog. Sorry for the long post.

My 18 year old son is battling a recurrence of APXA a rare high-grade brain tumor. He just had his 3rd brain surgery on August 27. This one they had to leave tumor behind due to location. This week has been tough, he is having lots of issues with spelling and writing and word finding and is frustrated, also right hand shaking when using it a lot and also very tired. The tumor came back only a little over a year after last surgery on Feb 14, 2019. He had proton radiation with TMZ and later a Mek inhibitor. Stopped TMZ as things looked good and blood counts were low.

His first surgery was for seizures as his tumor was stable for many years. It was total resection and path ganglioglima grade 1. We did not even have mri for 7 months, but when we did there was a new tumor, this one also total resection came back as APXA. EML4-Braf fusion (have not found anybody with this one) CDKN2a/2b deletion and tert mutation(this was new) When we found the recurrance on June 9, we swtiched from Mek inhibitor to a trial for 2nd generation Braf inhibitor TAK-580 but while he felt great on it the tumor grew like crazy. We went from nothing on March 9, to 1cm by 8 mm on June 9 and 3 by 4 cm August 26 day before surgery.

They want him to start PD-1 inhibitor immunotherapy along with stereotactic radiation next week. We are looking at also doing custom peptide vaccine, being offered a company in Mexico, they take tumor tissue to tempus they run genetic sequencing and then created a vaccine to be given along with immunotherapy.

He is clearly suffering from inflamation post surgery as he is having lots of issues he did not have before. He is super weak, especially right side( hand shaking on and off ) sleeping a ton. Started to have headaches this week, never had them before. I am scared on inflation immunotherapy causes.

I had him on 

longvida curcumin 400 mg tab curcubrain, boswellia extract 65% 500 mg amandean, nordic naturals ultra omega 3, papay for platelets, B complex 2 times a week his pee was neon, D3 gels 5000 but only 1 a week and probiotics daily. He also eats waffles made from flax and chia egg with lentil flour, buckwheat flour and quinoa flour with manuka honey and crackers with home made raw almond, brazil nut, pumpkin seed and hemp seeds and peanut butter. Sprouted bread toasted with garlic. Smoothie one a day cup of wild blueberry with brocolli sprouts, avocado and cacao and turkey tail mushroom powder.

I think I need higher dosages of these things from what I am reading

4 caps of longvida, should I switch brands? and on empty stomach

8 caps of boswellia not 1 like before

2 caps of rans-pterostilbene, we did not do this before I got the relentless improvement 100 mg

ultimate omega2x will give him 2150 mg omega3 and 1000iu D3, should I do more than 1 serving?

I got trans-pterostilbene and started him on it this week, i also have ashwagandha but not sure if that is needed. 

I really want to do cannabis we are in California right now and he has a card, San Francisco, if anybody can advise, would be great. We are here for another week.

Has anybody seen this type of tumor and success treating it when this aggressive?

Has anybody done neoantigen vaccine or know of someone who has we are looking at this

We are working with Dr. Kesari on this has anybody here worked with him.

He is also advising we do metformin, statin with all of this and then also add CDK inhibitor and mTor or Mek inhibitor. I am not sure how much his body can handle. He is 5ft 9 and 120lb now was down to 109 while on TMZ.

I welcome all advice, trying to find the right balance of what to do. He can swallow anything so pill number size not an issue. But hates trying new foods and is a super picky eater especially with healthy things and veggies, he loves hamburgers and cheetos and corn chips. I do give him grass fed 93% burgers, whole wheat buns and organic everything.

If you were able to do immunotherapy with supplements/repurposed drugs/any kind of other treatment and had success please share what you did.

Thank you again to everybody here and forgive me if some of this is confusing.


Urgent help needed - Butterfly Glioblastoma

September 12, 2020

Hi Stephen & All,

Seeking your help relating to my Mothers Brain Tumor treatment, please help with the treatments, procedures and medicines. We are in India and we have very limited access to new and emerging treatments and hardly in trails for Glioblastoma.

My mother (Age in 60's) diagnosed with Brain Tumor on April 2020, had first surgery in last week of April 2020, didn't receive any biopsy report till July and no other(Radiation & Chemo) treatment due to COVID lock down in India, July biopsy report after first surgery just mentioned possible high grade glioma, She recovered well after first surgery but in July she started having seizures and MRI in July showed recurrence and she had second surgery in first week of August but this time shes having issues after surgery due CSF leak and till now we trying to get it fixed before going for radiation, in the mean time we are looking for options we have to stop tumor growth, I think we are getting late in radiation treatment, I think if we can start chemo before radiation it may help.

As per her CT scan today her tumor is growing very fast.

Biopsy details from last month below

On IHC - The tumor cells are positive for GFAP, IDH-1 and p53, Ki67 index very high (30%).

Impression - Histological features are suggestive of  Glioblastoma, IDH-1 mutant, WHO grade IV, Corpus callosum.

August MRI - Recurrent parietal butterfly Glioma.

Please help.

Thank you


Thursday, 3 September 2020

Managing skin side effects of Optune

 Prevention and Management of Dermatologic Adverse Events Associated With Tumor Treating Fields in Patients With Glioblastoma

PDF available for free download here:

Chloroquine phase 1 trial

 Chloroquine combined with concurrent radiotherapy and temozolomide for newly diagnosed glioblastoma: a phase IB trial


Treatment of glioblastoma xenografts with chloroquine results in macroautophagy/autophagy inhibition, resulting in a reduction of tumor hypoxia and sensitization to radiation. Preclinical data show that EGFRvIII-expressing glioblastoma may benefit most from chloroquine because of autophagy dependency. This study is the first to explore the safety, pharmacokinetics and maximum tolerated dose of chloroquine in combination with radiotherapy and concurrent daily temozolomide in patients with a newly diagnosed glioblastoma. This study is a single-center, open-label, dose-finding phase I trial. Patients received oral chloroquine daily starting one week before the course of chemoradiation (temozolomide 75 mg/m2/d) until the end of radiotherapy (59.4 Gy/33 fractions). Thirteen patients were included in the study (n = 6: 200 mg, n = 3: 300 mg, n = 4: 400 mg chloroquine). A total of 44 adverse events, possibly related to chloroquine, were registered including electrocardiogram QTc prolongation, irreversible blurred vision and nausea/vomiting resulting in cessation of temozolomide or delay of adjuvant cycles. The maximum tolerated dose was 200 mg chloroquine. Median overall survival was 16 months (range 2 - 32). Median survival was 11.5 months for EGFRvIII- patients and 20 months for EGFRvIII+ patients. A daily dose of 200 mg chloroquine was determined to be the maximum tolerated dose when combined with radiotherapy and concurrent temozolomide for newly diagnosed glioblastoma. Favorable toxicity and promising overall survival support further clinical studies.