Hi everyone, it's been awhile since I've been on here. My husband was diagnosed 6/2016 and we are close to hitting that one year mark. We were looking forward to it as my husband had been getting weekly infusions of MRZ (marizomib-clinical trial) for 3 weeks out of the month and it was taking a toll on his arms/veins and he could have used a much needed break. Unfortunately, after monthly MRI's since December, NO suggested surgery as the spot they had been tracking had doubled since the last MRI and was ~14mm.
Up to now, my husband has been doing great and people often comment on how they can't even tell that he is battling brain cancer. The only issues he had was headaches (which never really stopped) and fatigue. However, he still continued to work every day and come home to help me with the kids. He even got discharged from hospital after 2 days and looks great!
The pathology report came back and we were hoping that the abnormality was just necrosis, but it's now confirmed that it's indeed recurrence. I guess the bright side is is that he can now do immunotherapy. I was wanting him to enter the dcvax clinical trial, but apparently it's closed. The only thing available for him at his treatment center (uc irvine) is ERC1671 in combination of avastin. Has anyone had any experience with this or can offer any feedback?? Thank you!
The problem with the ERC1671 trial is that it's placebo-controlled and double-blinded, nobody would know whether he's getting ERC1671 + Avastin, or just Avastin + placebo.
ReplyDeletehttps://www.clinicaltrials.gov/ct2/show/NCT01903330
There is a trial opening soon at UCLA testing DCVax with or without nivolumab, it was supposed to start this month, but the clinical trial listing still says not yet open. Maybe you could get an update on it from UCLA by contacting them directly.
https://clinicaltrials.gov/ct2/show/NCT03014804
Thanks for the prompt reply! Well, I guess this clinical trial is his No's trial... so she said after 2 months, they will do MRI and if they see progression, they will administer the real drug if he were getting the placebo.
DeleteI haven't heard anything about this drug from Facebook or forums and could only find one article on it where patient died due to complications from his other chemotherapy treatments... not bc of the drug. It didn't really reassure me and I want to be given more options. While on the other hand, I've heard a ton of things on dcvax.
In your opinion, does dcvax with or w/o nivolumab seem more promising than the ERC1671? I'll have to research more on the nivolumab... that's opdivo, right?
So I guess the dcvax at UCLA is only for those who are going to get a resection as they need LIVE tissue. However, we are switching from UCI to UCLA and the NO is recommending CCNU. I'm concerned as I read it's toxic and possibly not beneficial to unmethylated tumors? He also wants to apply for compassionate care to get Tagrisso as he has EGFR mutation. Do you happen to have any insight to all this?
DeleteI will try for a more complete answer tomorrow, but here is another published study on ERC1671:
ReplyDeleteFirst clinical results of a personalized immunotherapeutic vaccine against recurrent, incompletely resected, treatment-resistant glioblastoma multiforme (GBM) tumors, based on combined allo- and auto-immune tumor reactivity
http://www.sciencedirect.com/science/article/pii/S0264410X15004259
Yes I read that one as well.. I forgot to mention that one. Thanks for the link though.... the mention about avastin in there and also on here has made me anxious about it.... I think I will contact UCLA and inquire about the trial you informed me of. However, my husband told me that they already sent the specimen out to the Netherlands to make the immunotherapy drug! Do you know if they save some of it for later or do they use al of it??
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