Wednesday, 25 January 2017

Post SOC Advice

Thank you very much Stephen for allowing me to post my question here.  I've been reading this wonderful blog for awhile and I'm hoping to receive some guidance.  My husband 59 was dx with GBM (left temp) in March of last year.  He had surgery to remove 80-85%, received 30 Proton therapy treatments with TMZ, then 6 rounds of TMZ (5/23 schedule).  His follow up MRIs have shown swelling (the NO is calling it treatment effect).  He has just finished SOC so I'm looking for suggestions to look for potential trials and things we can do ourselves to keep from recurrence. His pathology is below and it is difficult for me to understand what we should be pursing.  We are mostly happy with his care but want to be as proactive as possible.  He is also on Keppra 1000mg 2x per day, Tagamet 200mg 2x per day, steroid 4 mg AM, 2 mg PM.  We eat mostly organic, no sugars, and try to limit dairy.  I also would like to incorporate more of the cocktail approach but I'm not sure what to try based on his pathology.  Any suggestions would be greatly appreciated.
There is no
immunoreactivity for mutant IDH1(p.R132H). p53 stains the nuclei of a
relatively small subset of tumor cells, which also retain nuclear ATRX
expression. Reticulin special
stain shows low reticulin content.
Methylation specific PCR analysis of the MGMT (O6 methylguanine DNA
methyltransferase) DNA repair gene promoter is in progress and will be reported
as an addendum  (he is not methylated)

NEGATIVE- FISH result for EGFR gene amplification
NEGATIVE - FISH result for loss of 10q/monosomy 10

this particular case, there was polysomy of chromosome 7 in 61.5% of the 200
interphase nuclei examined. The average copy number of CEP7 was 3.01 (ranging
from 1 to a high of 8 copies). The average copy number of EGFR was 3.16
(ranging from 1 to a high
of 8 copies). The resulting ratio of EGFR to CEP7 for this case was 1.03. There
was no evidence of EGFR gene amplification, as defined below, in the 200
analyzed cells.
In glioblastomas, the cut-off point that defines amplification is controversial,
although the most commonly accepted criterion for EGFR amplification is an
EGFR:CEP7 ratio of = 2.0 (Appl Immunohistochemial Mol Morphol 14:91-96, 2006; Am
J Surg Pathol


There was no evidence of PTEN deletion or monosomy of chromosome 10.


  1. This pathology report doesn't give a lot of usable information. It tells us his tumor is negative for: mutant IDH1, strong p53 staining, EGFR amplification, and loss of chromosome 10. It doesn't tell us what genetic alterations might be driving the tumor. You might try to find out if his medical insurance would cover the FoundationOne genetic testing available from Foundation Medicine, which could give more insight into the genetic drivers of the tumors.

    In the meantime, I'll share the Brain Tumor Library with you, which is a folder stored on my Google Drive account. There's much useful information there including spreadsheets for currently recruiting clinical trials and my "pharma and non-pharma" list compiling info and ranking the various drugs and supplements people are trying in GBM cocktails (folder 0 in the library).

  2. Thank you so much Stephen for your advice! I'm looking into the FoundationOne testing and the Brain Tumor Library. We found out yesterday that there may be some growth so I'd like to work this all out as soon as we can. Thanks again!

    1. I called Foundation One yesterday to ask if the tested for PD-l1. They said that they would test for it if request (not part of the typical report). They said it was considered an "add-on" that cost an additional $250.

      Mike B

    2. Thanks so much Mike for this info! I'm trying to see if the insurance co will cover any of this testing, but is is very helpful to know how much in case we have to pay out of pocket. Thanks again!