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Friday, February 14, 2020 12:46:36 AM
I agree with the advice from sentiment_stocks. This is the detailed tumor tissue collection method Northwest Bio’s DCVax-L recommends: http://virtualtrials.com/pdf2018/dcvaxfreeze.pdf
Brain tumor tissue is commonly preserved by the FFPE method (formalin-fixed paraffin-embedded). Preserving the tumor by freezing is preferable so it can be tested to determine which chemotherapy or immunotherapy agents might work best. A company that provides this service: Store My Tumor https://storemytumor.com
The tumor tissue should be tested for genetic mutations such as MGMT status, H3 K27M (or mutation of the H3F3A gene), IDH1 mutation, EGFR mutation/amplification, etc. These are very important and can change your treatment plans. If MGMT is unmethylated, Temodar has less of a chance of helping and this opens the door to other treatments instead. If H3 K27M (or H3F3A), EGFR, IDH1 or other genes are mutated, there are targeted treatments available. It is best to discuss the tests with your surgeon prior to surgery - if they do not offer these tests routinely, you can ask them to send the sample to a lab. Two companies that offer this testing are Caris Life Sciences https://www.carislifesciences.com and Foundation Medicine https://www.foundationmedicine.com
You might also contact some of the brain cancer advocacy groups who know about other promising treatments and available clinical trials and can help with a number of issues like getting insurance reimbursement for off-label use, support groups, etc.
Brain Cancer Advocacy Groups
Musella Foundation (Al Musella is very knowledgeable about various treatment options and clinical trials)
https://virtualtrials.com/index.cfm
National Brain Tumor Society
https://www.abta.org
American Brain Tumor Association
https://www.abta.org
Checklist for the Newly Diagnosed
https://virtualtrials.com/Checklist_for_the_Newly_Diagnosed_treatments.cfm
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