Sunday, 24 May 2020

CBD + ALA combination (GBM)


Do you have any thoughts on combining CBD with alpha-lipoic acid (ALA)? I haven't found any specific research on a combination. I am particularly interested in IDH-wild

Also... I would like to link some interesting stuff :

Concomitant Treatment of Malignant Brain Tumours With CBD - A Case Series and Review of the Literature
"a total of nine consecutive patients with brain tumours are described as case series; all patients received CBD in a daily dose of 400 mg concomitantly to the standard therapeutic procedure of maximal resection followed by radiochemotherapy. By the time of the submission of this article, all but one patient are still alive with a mean survival time of 22.3 months (range=7-47 months)".

Inhibition of autophagic flux differently modulates cannabidiol-induced death in 2D and 3D glioblastoma cell cultures
(CBD + chloroquine + radiation)

RelA-activity is essential for Cannabidiol-mediated cytotoxicity (no full research report available)
"We observed therapeutic efficiency of CBD in a subset of GBM, obtained genetic markers indicating CBD-sensitive GBM and found that the p53 status segregated cell-death modes".

Additionally - if somebody is considering CBD, CBG, or FECO, there is a new report you might be interested in (sadly, no real specifics, that's commercial research):

Sunday, 17 May 2020

Mebendazole, recommended phase 2 dose in high grade glioma
Reverse swing-M, phase 1 study of repurposing mebendazole in recurrent high-grade glioma.

"Interpretation: The recommended phase 2 dose of mebendazole is 1600 mg TDS with temozolomide and temozolomide-radiation combination while the dose of 800 mg TDS needs to be used with single-agent CCNU."

TDS apparently means three times daily, so 1600 mg TDS = 4800 mg per day total.

Saturday, 16 May 2020

Deciding between Chemo and Targeted Therapies for Recurrence

I've been a longtime follower of this community and I'm hoping that others here can help me cut through all the information I'm being given to make some decisions for my husband.

My husband was diagnosed at age 34 in October 2018 after having neck pain for a few weeks and then a sudden onset of extreme disorientation. He had an emergency resection (97.8% debulked). His tumor was originally located in the left parietal lobe. His tumor is unmethylated, IDH wild-type. Initially he followed SOC. Radiation concurrent with TMZ, then Stupp protocol 5/23 with Optune.

In May 2019, he had progression, stopped TMZ and Optune in preparation for surgery. Second resection in June 2019. He got a pre-surgical infusion of Keytruda (Pembrolizumab). Second surgery was MRI assisted at Memorial Sloan Kettering. Resection was successful and he followed with a short course of photon radiation and Keytruda infusions every 3 weeks. Around this time we also stopped doing a strict Keto diet because he had dropped close to 40 pounds. We now follow it in moderation.

We used Store My Tumor to preserve a tissue sample from the second surgery and used that to create an autologous dendritic cell vaccine from whole tumor lysate at Thomas Nesselhut's clinic in Germany. He was primed with an oncolytic virus, also used adjuvants of Inter-leukin 2 and Aldara cream.

Fall 2019 we continued Keytruda infusions and his dendritic cell vaccine with Tetanus adjuvant. In October 2019 he had an adverse event (possible focal seizure or pressure wave). We discontinued Keytruda (had completed 7 rounds). Started on a course of Avastin infusions and 4 mg Dexamethasone to control inflammation. We made the decision to discontinue Optune at this time. It was a quality of life decision. It was really interfering with his enjoyment and activity (we have twin toddlers). I am 100% okay with that decision and won't force him to do something he hates.

In November 2019 he was accepted into the SurVaxM clinical trial via compassionate release. He completed a priming dose (4 rounds) of the peptide vaccine SurVaxM. His most recent dose was in April 2020. In January 2019, it looked like there was further progression in the corpus callosum. We decided to continue with Avastin infusions and dendritic cell treatment and did a course of Proton Beam radiation.
His first MRI post radiation showed a modest reduction in tumor. (March 2020).
His most recent MRI in May 2020 is showing new growth. The area that got proton beam radiation continues to shrink, but there is a new tumor measuring 2.9 X 1.7 cm within the posterior medial left temporal lobe. Thankfully he has remained largely asymptomatic and stable. He has issues with leg weakness from prolonged steroid usage and his right arm and hand have lost dexterity. He has never had a seizure. He has some memory issues and lately some issues with processing.
Now we are faced with a decision about what to do next and we are getting a lot of differing opinions.
His tumor has the following markers:


We are deciding between adding a cytotoxic chemotherapy and a targeted therapy. One team of doctors is strongly recommending CCNU. Their other options would be Metronomic TMZ, Carboplatin, or Irinotecan.

Our vaccine team is very wary of cytotoxic chemo and believe it would negate the immunotherapies. They are okay with metronomic TMZ or metronomic Cytoxan.

A third doctor recommended Carboplatin and keeping Keytruda.

We have been offered the possibility of trying a targeted therapy to match his genetic markers. The choices there are Abemaciclib (CDK4/6 inhibitor) or Cabozantinib (MET fusion). I would like to get a PI3K/Mtor inhibitor or an MDMA inhibitor but there are next to none that are commercially available and I don't think we can get into any trials or want to wait that long. Piqray is one potential option in the PI3K/Mtor area. We don't know if we could combine them with chemo. I think we would have to see how he responds to one before adding them together.

Surgery and radiation seem unlikely though we are going to pursue consultations for surgery (we are based in NY) and gamma knife with Dr. Christopher Duma. I don't think these will pan out, but the consultations can't hurt.

I am really struggling with how to make these choices. His quality of life is fairly good. None of these options seem to have strong data behind them, but all have those small percentages of patients where things work and no one knows why.

I want to make a decision quickly. I am leaning towards Metronomic chemo (even though I know he is unmethylated and the chances of it working are small). But we can get it immediately and we know somewhat how he responds on chemo. He always tolerated it well, never had low counts and managed side effects with cannabis and IV fluids and colace. I think we could try chemo for one month and do another scan and see quickly if there is any impact.

We would have to get approval for the targeted therapies and I think perhaps it makes the most sense to hold those while we try something else.

He has been on his vaccine for almost one year and I have no idea if it has done anything, perhaps it's simply held things back.

I know this community has so much knowledge. I welcome any insight. He is 19 months past diagnosis and we have never had a long stretch of stability. We have thrown everything at this disease. Given how aggressive its been, I hope that all that we have done has given him more time than if we had just done SOC. I want to give him time, good time.

His genetic markers are:
PTPRZ1-Met Fusion

We completed EVA-PCD assay through Nagourney Cancer Institute. Tumor tissue sample allowed for testing of 5 agents. Results were:
  • Dactolisib (PI3K/mTOR)--sensitive
  • Palbociclib (CDK4/6)--sensitive
  • Crizotinib (ALK/MET/ROS)--intermediate
  • Carboplatin & Topotecan--intermediate
  • Olaparib (PARP)--resistant

His medications are as follows:

Dendritic Cell Vaccine
SurVaxM vaccine
Tetantus adjuvant
Aldara adjuvant
Lion's Mane




Boswellia Serrata

Valproic Acid
Turkey Tail
CBD (sublingual)
Cannabis (whole flower, vaporized as needed)


Wednesday, 6 May 2020

Please, help

Hello everyone. I ask you for help and advice, share personal experience. My mother is 57 years old, she was diagnosed with degree IV glioblastoma, IDH 1 mutant, methylated MGMT. She underwent complete removal of the tumor, went through 30 sessions of 2 gray. Now we need to undergo chemotherapy. TMZ or TMZ + CCNU? What other drug combinations are possible? What dietary supplements can be taken and in what doses, in what mode? I will be very grateful for any information and advice. Many thanks and health to all of you!