Thursday, 9 March 2017

Early reccurance? please help

Good morning all,
I have posted a story of my husband last year, but now I am in a black hole and l need help.
He was diagnosed with GBM IV October last year. He had big tumor in right frontal lobe over 6cm diameter. After some time we have found out that it wasn't total resection with some tumor left in corpus callosum and lodge. Till the end of the year he had finished his 6 week course of chemo and radiotheraphy. Then he was switched to monthly TMZ.
At that time we also have started vaccination with NCV because we didn't have fresh tumor tissue for DCV. A week after each vaccine he had seizures despite the fact being on Keppra and Depakine. For the first time we thought it was time coincidance. But after second he did extra scan and yesterday we found out he has two tumors - one in the lodge 5cm and second 4cm crossing corpus callosum in left hemisphere and huge oedema.
Today neurosurgeon told me they won't operate and that the treatment is over.
He is on meds from Cusp-nd protocol from the pretty begining, his tumor was MGMT promotor methylated so I don't know what has happened and what to do.
Can vaccination have such a huge impact on scan?
I don't know if we should try
rechallange it with metronomic TMZ,
try different chemo
go on Avastin
Perillyl alcohol
Any thoughts....
I thought we have a little more time together...


  1. I'm so sorry to read this. If you can get perillyl alcohol where you are, I would recommend it but it does take time to work.

    And I'm a firm believer in Nivo; Dr. Friedman from Duke first told me about it when my wife was diagnosed over 15 months ago. We're on our second month of it. It only seems to work on 20-40% of the people that take it - Stephen knows the stats better than me - but for those that it does work, the changes are drastic and durable.

    I hope this helps a bit.

    1. We are also on IOZK. They told me that tumor cells circulating in blood were negative for mRNA expression for PDL1. I don't know is it possible that in brain we have some cells with different expression?

    2. Sorry for the late reply here as well; we didn't even bother testing for PDL-1, moreover, I personally know two people with lung cancer that were negative for PDL-1, were given Nivo as a last resort, and *still* had solid, solid improvement. I would press for that if you can.

    3. Wait, if you're at IOZK, I'm fairly certain they have POH. If so, please request that. Note that it takes times to work, much like Optune. But I think the evidence supporting it's use is compelling.

  2. When was radiation completed? When treatment-related pseudoprogression occurs it usually occurs within the first 3-6 months following chemoradiotherapy, and this happens more frequently in tumors with methylated MGMT status. I would get a second opinion to make sure this isn't pseudoprogression versus true progression. Even if it is tumor progression, I wouldn't accept them saying "treatment is over".

    For a second opinion in Europe, the cancer center in Heidelberg Germany comes to mind. It is one of the most advanced centers for brain tumor research.

    1. Might not be pseudoprogression if located outside the original radiation field, but inflammatory responses following immunotherapy can also look like progression on an MRI

    2. Radiation was completed 23th of December last year. I had an appoitment in Heilderberg but after his scheduled scan - in April, but I am trying to get it earlier.

  3. Thoughts with you. Going through GBM 4 last October. And now some complications. Let us know how you are. Cyber caring for you.