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mercygrace's Message Board Messages

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Thank you..that gave me a bit of hope. Honestly, this journey is really testing my faith. I’ve prayed countless number of times and now that I’m seeing my husband struggling with his deficits, I’m wondering what my prayers are worth, especially if God already has His plans. Not trying to be negative, but this is just where I’m at at this stage in my life. Thank you for the response though... its helping.

Looking for positivity

by mercygrace - October 15, 2018

Hello, My 44 year old husband was diagnosed with GBM 6/2016 and it’s been 2 years and 4 months now. He had two areas, one was removed surgically 2x and the other was stable until recently and a third spot has popped up next to the second one. Along with two surgeries and SOC, he’s done two clinical trials and a 2nd course of radiation (for the 2nd tumor that was not removed). The 2nd clinical trial involved immunotherapy (ERC) where they made a personalized vaccine with the resected tumor along with avastin. A complication came up where he had to stop avastin... they say it could have been an indirectly related complication, but don’t know for sure. Coincidentally, right upon stopping avastin, he started to have left sided weakness. Increased steroids have not helped at all and I feel as though his left side is getting progressively worse. We decided to stop the clinical trial as it’s been 3-4 months on the trial and the mri’s were not getting better even with the radiation and this was when the 3rd spot popped up. They also proposed another round of radiation bc they felt like it helped a bit. We were against it since he is now having deficits which he did not have before. We changed hospitals from UCI in CA to Providence St John’s in LA, CA. He’s on another clinical trial involving afatinib which he just started today. I cannot seem to find much information on this drug and the 1 person who was on it seems to have passed. I’m at a loss right now as to what to do. Even with the grim prognosis, especially with multi focal GBM, the 2 surgeries and 2 failed clinical trials, I’m not done fighting. Can anyone chime in about this drug? Does anyone have any suggestions on some successful clinical trials he could do? Any positive stories after experiencing one sided weakness?? He is also doing cbd/thc oils, but I don’t think it’s not even close to the 1g people are saying to do. He does as much as he can tolerate. Please no negativity.
I am in the exact same situation with two young children. I'm a SAHM and my husband is expected to receive treatment next week. I'm anxious and fearful of what the effects of the treatment will be, but I keep praying for the best. I'm not sure what the "wild gene" is, but the dr told us that my husband does have something that makes him more resistant to chemo treatment.... I'm really hoping that is not the case for either of us! I'm glad you posted because I feel a little reassured that I am not alone in this... This disease is truly horrible and I hope we can support each other in this journey. Good luck with everything!
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