An Account of a Glioblastoma Patient with Over 20 Years of Survival

Last updated Sunday, December 10, 2023

In December 2002, my father-in-law began to talk incoherently while he was at the office. A coworker accompanied him to the hospital, where an MRI scan revealed a brain tumor. Jorge underwent surgery the same week and the biopsy results confirmed it was a glioblastoma multiforme, a type of malignant glioma.

 During the following months, he received the standard treatment for this type of tumor: radiation followed by chemotherapy. The tumor came back and continued to grow during the chemotherapy treatment (Temozolomide). His oncologist said further treatment would be useless.
Jorge with 2 of his grandchildren (2016)
He was lucky enough for another neuro-oncologist to agree to take over his care, so he was able to begin a new cycle of chemotherapy, this time CCNU (lomustine) and Tamoxifen (40mg/day), an antiestrogenic drug. The goal was to extend Jorge's life for a few months. It seemed a good deal at that time.

He altered his diet, reducing his intake of meat and steering clear of processed sugar whenever possible. Most days he'd drink a fresh vegetable juice or two. He had been taking melatonin πŸ›ˆ, 3 mg a day. His new oncologist agreed to continue supplementing melatonin and we increased the daily dose to 15mg. In addition, my research led me to try a supplement containing 'antineoplastons' (A10). We got it online via a webshop in the Netherlands. Dr. Valenzuela didn't object so Jorge started taking 18 A10 pills a day (3 x 6/day) about the same time he started the CCNU chemotherapy. 

A new MRI, one month later, showed a slight reduction of the tumor. Jorge continued taking CCNU, Tamoxifen, Melatonin, and Aminocare A10 (Vitamin B-2  10.2 mg  600 L-Alanine 50.0 mg   L-Arginine 54.0 mg   Glycine 50.0 mg   L-Ornithine 50.0 mg   L-Glutamine Derivative (A10)  350.0 mg   L-Serine 50.0 mg   L-Threonine 50.0 mg   L-Valine 50.0 mg per serving) and stayed on a sugar-free, meat-restricted diet. He was able to complete the 6-month CCNU treatment without any noticeable side effects.

 By January 2004, the tumor was virtually gone and what was left was scar tissue.

 Now, 17 21 years after his cancer diagnosis, he's enjoying his pension. He still takes Tamoxifen, a reduced maintenance dose. 

 Because Glioblastoma cures are so rare you're left wondering why the tumor disappeared. 

 A phase III trial, on the combination of bevacizumab and lomustine versus lomustine (CCNU) in patients with first progression of glioblastoma, resulted in a total of 8.8% of patients in the combination-therapy arm with no progression at 1 year, compared with 1.9% of patients in the lomustine-alone arm. Overall survival did not differ between the two study arms, with a median overall survival of only 8.6 months for the lomustine-alone study group and 9.1 months for the bevacizumab/lomustine study group.

 In vitro,  Tamoxifen is effective at killing glioma cells, yet several studies have not shown any benefit in overall survival. However, in one study of 38 patients with recurrent glioma, when suppressing thyroid gland activity to a low, but clinically tolerable level, it increases the effectiveness of tamoxifen, by lowering IGF-1 levels. To induce hypothyroidism, up to 1,000 mg of propylthiouracil daily and 30 mg of Lugol’s solution (Iodine) were given three times daily for 14 days. This is an interesting study in many ways. For instance, the use of Iodine πŸ›ˆ, which has apoptotic properties. 

 The case for supplementing  Melatonin against Glioblastoma is getting stronger. New studies confirm the anticancer activity and synergy with chemotherapy {ref} of melatonin. Jorge kept taking melatonin, though intermittently, for a few years.

Recently (2016) I learned about  Sodium Phenylbutyrate. When this drug is metabolized in the body it produces byproducts, phenylacetylglutamine (PAG) and phenylacetate (PA), which are actually the same compounds Dr. Burzynski produces synthetically (antineoplastons A10 and AS2-1). Phenylbutyrate was approved by the FDA in 1996 to treat a genetic disorder called Urea Cycle Disorder.

Ammonia can compete with phenylalanine for the enzymes involved in the formation of PA and PAG, leading to decreased formation of PA and PAG and increased levels of phenylalanine in the body, in line with the levels observed in cancer patients {ref|ref}. 

 In 2002, the H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL informed of the complete response of a recurrent, multicentric malignant glioma in a patient treated with phenylbutyrate. The patient in this study took 3 daily doses of Phenylbutyrate orally, for a total of 18 grams a day.

 In 2016, a study found that Phenylbutyrate suppresses the proliferation of glioblastoma LN-229 cell line.

 Phenylbutyrate is an HDAC inhibitor, a chemical compound that may block tumor cell proliferation.

Probably just as important, oral phenylbutyrate can be used as a “glutamine trap” to create a model of glutamine/ammonia depletion πŸ›ˆ {study|hypothesis}.

 Hence we have scientific studies confirming the anti-cancer activity of antineoplastons, by way of an orally administered powder, Phenylbutyrate. 

 Note that Burzinsky is currently prohibited to sell antineoplastons, and although  Aminocare A10 is still available, the formula has changed and no longer contains antineoplastons. But Sodium Phenylbutyrate (Buphenyl) should be available off-label. 

Update: Jorge's last MRI was in November 2023, and all clear. MRI is available upon request (please use the comment section below to contact me).

Complementary and Alternative Medicine (CAM) for Glioblastoma (Integrative Therapies)


     1. Supplements

            →: Possible synergistic effects


         2. Repurposed drugs πŸ›ˆ

    • Phenylbutyrate  (Sodium Phenylbutyrate (4-PBA) Powder) or Glycerol phenylbutyrate (Ravicti)
        • → L-ornithine {ref}
        • →  Vitamin D {ref}
        • →  Melatonin
    • Chloroquine (see below)
    • COC protocol {ref}
    • Celecoxib + sildenafil (PDE5 Inhibitor) {ref}
    • Methylene blue {ref | link | link} drug info MB IV (contraindicated in patients with glucose-6-phosphate dehydrogenase (G6PD) deficiency)
    • Mebendazole {study|article}
    • Melatonin + Albendazole {ref}
    • Repurposed Drugs by Stephen Western Astrocytoma Options.com
    • Therapeutic strategies for diffuse midline glioma from high-throughput combination drug screening
    • Niclosamide + camptothecin {study}
    • Synergistic Suppression of Glioblastoma Cell Growth by Combined Application of Temozolomide and Dopamine D2 Receptor Antagonists {ref}
    • Drug repositioning: Using psychotropic drugs for the treatment of glioma {ref}
    • Bumetanide: NKCC1 Regulates Migration Ability of Glioblastoma Cells by Modulation of Actin Dynamics and Interacting with Cofilin {ref}
    • Cyproheptadine {ref}
    • Sulconazole {ref} "An in-depth investigation of this compound revealed that it competes with biotin (Vitamin H), an important co-factor for metabolic enzymes and modifier of histones, allowing it to inhibit the normal function of biotin-dependent metabolic enzymes and specific histone modification-associated gene expression. Since biotin is found in various food sources, including legumes, egg yolk and offal, and commonly consumed as a supplement, these findings raise an important consideration of regulating biotin consumption in glioblastoma patients."
    • Posaconazole {ref}


    Synergistic combinations of natural compounds and drug repurposing
    For information purposes only, nothing I write is medical advice. 

    Strategy - an integrative approach to cancer management: example of a multi-layered approach using coactive combinations of natural substances and drug repurposing.

    click to enlarge the diagram

    Promising experimental treatments for Glioblastoma


    ➤  DELYTACT  (Japan) "In this G47∆ phase 2 trial, the median OS was 28.8 months from the initial surgery."

    ➤  Adding chloroquine to conventional treatment for glioblastoma multiforme: a randomized, double-blind, placebo-controlled trial. Median survival after surgery was 24 months for chloroquine-treated patients and 11 months for controls. https://www.ncbi.nlm.nih.gov/pubmed/16520474
    • Chloroquine enhances temozolomide cytotoxicity in malignant gliomas by blocking autophagy {ref}
    • Quercetin and chloroquine synergistically kill glioma cells by inducing organelle stress and disrupting Ca2+ homeostasis {ref}
    ➤ Salinomycin with 2DG - More info on this treatment here

    ➤ Natural killer cell awakening: unleash cancer-immunity cycle against glioblastoma {review}

    ➤ Combined treatment of 2-DG analogs and modulation of histone deacetylases (HDAC) activity via HDAC inhibitors (sodium butyrate and sodium valproate) exerts synergistic cytotoxic effects in glioblastoma U-87 and U-251 cells and represents a promising therapeutic strategy {study}

    ➤ Gallium maltolate in glioblastoma cells is enhanced by metformin through combined action on mitochondrial complex 1 {study}


    ➤ Synergistic role of thymoquinone and 5-fluorouracil in U-251MG glioblastoma cell line {study}

    ➤ Durable response of glioblastoma to adjuvant therapy consisting of temozolomide and a weekly dose of AMD3100 (plerixafor), a CXCR4 inhibitor, together with lapatinib, metformin and niacinamide {ref}


    References & Sources
    * Solely intended for informational use, none of my writing constitutes medical advice.


    3 comments:

    1. laika_in_spaceSeptember 11, 2022 at 4:11 PM

      Thanks for writing this important report!

      Do you have an opinion on what dose of sodium phenylbutyrat would be sufficient? 18 grams / day would be ~$1500 / month, which is a bit out of reach for me.

      ReplyDelete
      Replies
      1. JVSeptember 12, 2022 at 8:26 AM

        I've included a link to a generic (and cheaper) option here: https://synergiesforcancertreatments.blogspot.com/p/butyrate.html

        I would start at 4grams a day, and up-titrate if needed.

        Delete
    2. AnonymousJanuary 17, 2023 at 4:47 AM

      THANK UOU

      ReplyDelete

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