Sunday, 19 March 2017

What now? Help!!!


Our 5 year old daughter's GBM has returned.  Last month we travelled to Tubingen Germany to begin a customized peptide vaccine treatment for her.  During the course of the treatment injection 'boosting phase' she began to complain of her back hurting.  The co-injections prescribed by the vaccine protocol are Leukine which has a side-effect of "bone pain".  We thought her back pain was this but her symptoms worsened quickly towards the end of our visit to Germany and upon returning to the USA requested a spine MRI which revealed large tumors in her spine.  This came as a crushing blow to us since she had been NED since having a total resection a year ago.

She has begun radiation on her spine along with steroids which has improved her mobility.  Another brain MRI revealed very small growth in her head in the brain base and on the optical nerves.  A subsequent head MRI 16 days later shows very little growth in the head lesions so that is a good sign in terms of the brain cancer growth rate.

We see the best possible chance for her is getting her off of the steroids and ending radiation ASAP.  To this end we have started her on Avastin every 3 weeks and are not planning to perform any head radiation at the moment.  We have had all of the remaining peptide vaccine doses sent to the USA so that we can continue her peptide injections every 2 weeks once the radiation stops in the hopes that the vaccines have an effect on her tumors.

We are aware that things do not look good for our daughter but what we are really frustrated with is the lack of options we have been presented with by her oncology team.  As any family dealing with this awful disease, we are willing to go anywhere for treatment.  What would be the collective advice at this point?

• Polio vaccine at Duke _ not possible due to multi-locations of recurrence

• Dendritic Cell Therapy?

• Who is doing the best work with checkpoint inhibitors?

• Is there an institution that can pull biopsy of tumor material from blood/CSF with best results towards sequencing of the new tumors?  MSK unwilling due to swelling

• Other?

Thanks as always to this community.



  1. Winston, I am so sorry to hear this! I am certainly not an expert here as we are just in the early stages of this journey, but maybe you can check about Newcastle virus - IOZK and Dr.Van Gool are doing it in Cologne. I would give them a call or/and send Van Gool an e-mai.
    Would it make sense to search for second opinion at Dana Farber? I didn't have a great experience with them, but who knows. I heard good things about Dr.Goldman at Chicago hospital - he was actually the first doctor (and the only American one) who mentioned Van Gool and seemed at least more cring than many others.

  2. I'm so sorry, what a horror.

    I have no idea if BMS will allow a checkpoint inhibitor (Opdivo) compassionate use but you can certainly press your NO to try.

    Wishing you all the best.

  3. Winston,
    We are leaving for IOZK tomorrow and besides NCV we will be doing Keytruda there 9 would cost us a lot, but who cares at this point, ofcourse!)- our local NO is not cooperating, but IOZK suggested it to us ( we have PD1). I certainly would call or e-mail Van Gool - he is treating a number of DIPG patients- I know that is not your case, but he is surely familiar with situations when US doctors were not offering much. Maybe he can have other ideas - I can talk to him about you when I am there, but you are probably better off calling him or e-mailing yourself. He works 24 hours a day seems like !

    1. Good luck Olga. Pulling for you.

    2. Olga-

      Do you have Dr. Van Gool's email?

  4. Winston -
    I am so very sorry. Regarding Keytruda and Opdivo, you may qualify to get them free if that's the path you want to take. I got my Dad approved for a year of Opdivo fairly easily, just had to prove their income was low. My parents were both on disability so I think I just sent in a statement from that. I did not include rental income. I have heard that Keytruda has less stringent income requirements for patient assistance. If you are interested in either, I would start the path ASAP as it was about a month from start to first injection for my father. He did not make it, and only had 2 infusions, he was too far gone. But I feel zero pains of 'not trying' everything we could. It also gave him HOPE which was not given by any of our NO's suggestions and so very valuable for my family. Best luck to you. I wish I knew more. I have a 5 year old son.

    Love, Annie

    1. I believe David Reardon in Dana-Farber is doing the best work with checkpoint inhibitors. (

      My heart goes out with you Winston!

  5. Thank you, Winston! Van Gool's e-mail is :

  6. Winston, I know that DIPG patients often go to Harley Street Clinic in London. Maybe it is worthwhile to check it out as well.

  7. Yup - +1 for Dr Van Gool at IOZK in Cologne Germany - I have this for his email -

  8. Have you found Ben Williams' book or film of the same name, Surviving Terminal Cancer? He's a 21 year glioblastoma survivor and researcher.

    The film is free to watch online. Ben is also very approachable and will respond to email. He writes updates every year as he learns more. is a good resource to find these and to learn more about the treaties used to successfully overcome GBM.

    Be gentle with yourself. You're doing your best in a very tough situation. - Ellen

  9. Correction: treatments, not treaties used