Sunday, 10 January 2016

Polio and fed up.

Hello everyone.

I just wanted to clear my thoughts since i can't do elsewhere. My dad got a recurrence a couple months ago. Past two weeks he cant walk anymore, he needs help with everything. He sleeps the whole day. I am so freaking sad and pissed at the same time, because i feel like there is a cure out there: polio. But everything goes so slow.. Trials are taking years. I read that the polio was tested on monkeys with gbm almost 10 years ago. I think everything could go faster we just dont have time.
After first resection 98% my dad could do anything he could even jogging at the beach. He doesn't want to die, he is 59 years old. Yesterday he didn't know how old i was.. He thought me and my twinsister were sixteen but we are 21 years old. I am so extremely sad , he is such a wise man he always knew everything he is a doctor himself.

I feel like if they infected his whole right brain right with Polio after the first surgery when they removed 98% of the tumour he would be cancer-free today.

I hope the thiamazole will work soon, because we need some light in this darrk times. He also takes Valcyte 900 mg a day. I am not sure about DCA , just got it in the mail, but don't see much evidence.

My dad just got his mri results a week ago they said it didn't change much since the last one, but he can't walk anymore... So it's quite confusing.

Sadly We live in the Netherlands and there are ZERO trials here with potential.

Any advice is welcome. Thanks, Lycka.


  1. Hi Lycka,
    My family and I share your frustration! We believe there is more help out there but we cannot access it :(
    Hang in there!

  2. Polio was tested on monkeys with gbm 10 years ago? Do you have a link to that study?

  3. Seems desperate, you should try for a solid-tumor study using immune checkpoint inhibitors. The inclusion criteria may not be so harsh. Alternatively, try a vaccine with NCDV if no trials are availalble. There is also something to the DCA therapy people are advocating. The virus should help other immunotherapies work better (like vaccines can do). The checkpoint inhinitors are a good next step (nivolimab etc.)