Looking for positivity

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Looking for positivity

by mercygrace on Mon Oct 15, 2018 11:28 PM

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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.

RE: Looking for positivity

by rbernacki on Thu Oct 18, 2018 03:20 PM

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I am a seven year survivor, and i am praying for you and your husband, my left side, mainly hand and foot have never returned to normal, Weak and uncoordinated. 

Prayer saved me.

RE: Looking for positivity

by mercygrace on Thu Oct 18, 2018 10:25 PM

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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.

RE: Looking for positivity

by rbernacki on Thu Oct 25, 2018 06:50 PM

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I know its hard to hold on to your faith through this yet, you must - if it helps, I would remind myself many times a day that may faith was undauntedand let God do his work, by your faith you are healed jesus said.

Praying for you both!

RE: Looking for positivity

by ottoh on Thu Nov 01, 2018 07:28 PM

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Hi mercygrace,

My wife had her first surgrey 12/15/2015 for GBM. We went to MD Anderon when it came back even larger 6 months later. She was in the CMV clinical trial there, and she has had clear MRi's ever since. We have had her on CBD oil, ( get the highest grade oil you can) and Rick Simpson oil. I give her the CBD oil in the morning, one dropper full, and then give her another dropper full at night before bed, mixed with the RSO and a powdered CBD mix. This way it helps her sleep and she is not stoned from the RSO all day, just while she's sleeping. We have had her on this since the last surgey and I believe it has really helped her. You can also look into the Polio virus clinical trial at Duke University. Two good trials. Good luck and best wishes. 

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