Wednesday, 7 December 2016

Dear All,

I kindly ask for advices regarding Vitamins/Meds I could give my dad. I am new to all of this, doing my best by reading studies and this blog. My dad had surgery on August 3rd, diagnosed on August 18th. We live in São Paulo-Brazil and there are no clinical trials here and a bunch of other stuff available in the US/Europe. Which makes my situation a little harder but we plan to travel for vacation to the US in January so maybe then I can buy some meds/vits. His tumor is on the right frontal lobe. He's doing great, no side effects, no after effects whatsoever. Still working, going to the gym, golfing and playing tennis. He's 1,75m and 87kg.

So long story short:
He had pulmonary embolism after surgery which postponed the beginning of his cancer treatment
IMRT began on October 3rd with Temodar.
Temodar 42 days-cycle ended on November 13th - 145mg/daily
IMRT ended on November 17th - total of 6000cGy (there were a few holidays in-between)

Currently he is on a pause from his cancer treatment, MRI scheduled for this Friday (high hopes everything is fine!). His onco explained us last week that from now on he is going to be on a 5 days on / 23 days off of Temodar cycle for the next six months, starting on December 17th.
First cycle with 300mg, from second cycle on 400mg.

Although I know this is the standard protocol, I feel like there are more stuff I can do for him.

His current meds/vits are:
Phenytoin 100mg 3x/day - he started having seizures, that's how we found out
Carbamazepine 200mg 2x/day - same reason as above
Rivaroxaban 20mg 1x/day - for the pulmonary embolism
Dexamethasone 4mg half pill 1x/day - for edema
Vitamin C 1mg 1x/day  - got the idea from here, approved by the doc
Vitamin D 2000IU 1x/day - got the idea from here, approved by the doc
Green tea whenever he wants to drink it which is like, 2x/week - got the idea from here, approved by the doc

Once he starts the next chemo cycle, onco told him to take Trimethoprim/sulfamethoxazole 3x/week also for six months.

Biopsy report: 
AE1/AE3 - negative
EMA - negative
GFAP - positive
Ki67 - 50% positive
Neurofilament - negative
Protein S100 - positive
ARTX - nucelar reaction preserved
IDH1 - negative
Mutations p.Arg132Cys / p.Arg132Gly / p.Arg132His / p.Arg132Leu / p.Arg132Ser in the 132 gene codon IDH1 were not found
P53 - plurifocal reactivity (2+/4+)
EGFR1 - positive, score 220/300
MGMT - negative (unmethylated)

Is there anything I can give him to make him better? Am I missing something? What else could I do for him?
I accept every advice and suggestion, I'm kinda lost and blind here but always hoping for the best.

Today is his 61st Birthday.
Happy birthday dad! We love you so much!

Thank you for being the best support system anyone could've asked for!
My heart goes out to every and each of you!


  1. DMG,
    As you live in Brazil, for starters I'd reach out to Dr. Clovis da Fonseca and ask him about getting intranasal perillyl alcohol for your dad. Matias who lives in Brazil and sometimes visits this blog may be able to comment further about that. Also see previous comments about perillyl alcohol here:

    I can send you Clovis' email address by email.

    Secondly, I'd ask about exchanging his current anti-seizure meds for Keppra (levetiracetam). Keppra may have several anti-tumor mechanisms and has led to longer survival when taken with TMZ (Temodar) in retrospective GBM studies. It potentially inhibits MGMT expression, which could sensitize tumors to TMZ. There was also a recent study showing Keppra can inhibit gap junction communication between glioma cells and surrounding cells.

    High positivity for EGFR may indicate EGFR gene amplification. EGFR-driven tumors may be more responsive to chloroquine/hydroxychloroquine treatment. Chloroquine or hydroxychloroquine combined with rapamycin [sirolimus] might make a good combination as seen in this case series:

    These are the things I would work on for starters.

    Best of luck, and hopefully you have or are able to find co-operation from his doctors.

  2. Hi Stephen,
    OMG thank you so so so much! I knew you are the best!

    His onco is against perillyl alcohol since there´s only one study published about it and he doesn't trust its effectiveness. I already have Dr Clovis contact, thanks. And then my dad doesn't want to test it.

    About the other two suggestions, I didn´t know about them but will talk to his onco.

    Once again, thank you!
    You are a very enlightened human being!

  3. Dear Stephen and All,
    I was looking online for more researches that could confirm perillyl alcohol's efficacy and I found this:

    Idk if you already read it, but I thought it was worth the share.
    Will talk again to my dad and his onco.

    *when you open the link, if it appears like failed link just click on reload; it worked for me.

    Lots of love and hope,

  4. Hi there you all,
    my dad's last MRI showed that the tumor which had 2cm grew 9mm in 2 months but with dead areas (possibly RT necrosis) - is this good ? I know it's grown but 'dead areas' excites me somehow.
    Another thing that really hit me is that for the first time it showed satellite tumors - we don't know how many, we just know that the biggest has 1cm. - Can someone please enlighten me about this 'satellite' tumors ? Does this mean that the chance of getting more 'real' tumor is higher ? Or is it already happening ? We just need a light here, please.


  5. Hi Dany, my thoughts with you. My husband has been diagnosed with Unmethylated tumour too. How is your dad going? My thoughts with you and family.

  6. Hi everyone, it's DMG (different account)
    Sorry Sonja, I just read your message.
    Today we went to onco and found out there is in fact a tumor progession. It has now 3,9cm.
    Should start on avastin + cpt 11 on Feb 20th.

    Lots of love,