Friday, 13 January 2017

Unmethylated treatment advice

My beautiful husband had removal of GBM left parietal tumour last October.
Histopatholgy results:
The sections show multiple fragments of hyper cellular brain parenchyma, diffusely infiltrated by tumour composed of hyper chromatic and atypical glial cells, set in a fibrillary background.   The glial cells have a broad morphological spectrum which includes scattered epitheloid forms with abundant pink cytoplasm and smaller glial cells with a high nuclear to cytoplasmic ratio. Frequent mitotic figures are present including atypical forms. Multiple foei of palisading tumour necrosis and microvascular proliferation are seen.
ATRX: retained 
IDH1 (r13211) immunonegative
EGFR; strongly and diffusely positive
P53: positive in approximately 30% of the tumour cells
Ki67 prolification index: approximately 20%
Glioblastoma IDH-wild type grade 4 

After surgery we have commenced veliparib  + radiology.
We are now on a break and due to commence veliparib + temozolomide in about a week (6 month treatment:one week on tablets ; three weeks off)
Current supplements
Vitamin D
+ Ketogenic diet 

Because we live regionally (in Australia), we are now assigned a local oncologist (not neuro-oncologist).  This VERTU trial is the only offered treatment.  The oncologist is reluctant to discuss other options/supplements.
The registered nurse overseeing the trial said that if I approached the doctor and asked to add a medication they would consider it, so we have an appointment next week that I have an opportunity to put a case forward for other treatment, hence I am asking for advice.

Question: should we be pushing for Keppra?  

Question: should we be looking for other treatment... I am not hearing much of anyone on veliparib.

Question: Please advise if it would be beneficial to add artemisinin to the supplements, and if so how will that work with the veliparib  + temozolomide 

Question: Do you have any other recommendations for supplements?

Thank you in advance for any assistance.
And I also thank you all for writing on btcocktails  and sharing stories and knowledge... It makes me feel not so alone.


  1. Hi Sonja,

    I am very sorry to hear about your husband. I recall reading a study about a person who was diagnosed with wild type IDH1 but had positive methylation which offered a mixed prognostic picture. The person had progression free survival of 5.5 years and in the study the authors believe that risperidone (which the patient was taking for schizophrenia) might of had something to do with the long term survival.

    " Risperidone antagonizes the dopamine-2 receptor and the serotonin-7 receptor, both of which have been individually implicated in the growth and progression of glioblastoma."

    Of course this is just one case and not statistically significant whatsoever and I am no doctor. With that said, it might be worth taking a look into if you are thinking of putting together a cocktail. Study below..

    1. Thanks Michael. Interesting study and survival time. It will be hard to discuss this with our doctor with only one case. I think Risperidone may have some side effects too. I'm trying to find information on Keppra and suitability with veliparib and temozolomide. I believe Keppra has some possible benefit for Unmethylated. Do you have any knowledge on this drug mix?

    2. Michael, I am re-looking at respiridone. Just reading your posts with Stephen from late last year.

  2. The report says IDH1 ( r13211) immunonegative
    Does this mean IDH1 positive?

    1. IDH1 R132H immunonegative means the IDH1 mutation was not detected. In other words, IDH1 wild-type (unmutated).

    2. Thank you Stephen, for clearing this up for me.

  3. Sonja, Good luck on the journey.
    I participated in the Velipar trial here in the US. Additional drugs I took during the Velipar trial include Celebrix and Metformin. Additional suppliments: colorius versicolor(turkeytail), melatonin, Boswellia, Vitamin K, Molbdenum, thymus, Berberine, fish oil.


  4. Thanks for your reply, Marc. Were you on the trial because you were unmethylated too?

  5. Hi Sonja, so sorry to hear about your husband. My mother in law has recently been diagnosed with a GBM. She had almost 80% of the tumour resected but is yet to begin treatment as she experienced extreme negative response to the surgery.

    I'd love to chat more about your journey with you as we are in Queensland Australia.

    1. Hi Nikita,
      Just a suggestion: you could contact Professor Khanna in Herston (Brisbane) to see what vaccine trials there might be ongoing for GBM.

      Contact info here: