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!