My husband was diagnosed in September 2016 at 38 years with GBM IV in frontal lobe, 8cm diameter size. He lived 4 years and 2 months from diagnosis.
I remember over 4years ago I was desperatly looking for the cure for him, some knowledge and hope.
With my medical background I felt that we have to take risks, that with standard care we will get standard results - this website was an incredible source of knowledge plus Ben Williams, plus Mustella fundation, plus Inspire forum. I want to share our story.
Subtotal resection on October 2016. GBM IV, Wild type, methylated. Then standard protocol temodal and radio for 6 weeks.
Before radiotheraphy he was put on valproic acid 1g twice daily (without epilepsy). Right before radio he was in ketosis (not eating for 36h) and during Stupp protocol on very strict keto diet. During this time we add some repurposed drugs - metformin, chloroqinine, disulfiram, keppra, cimetidine, celecoxibum, alfadiol tried to decrease dexamethazone as much as possible. Boswellia, curcumin, green team from the very begining. 3 months after completing this protocol he had huge pseudoprogression - maybe due to all this stuff. But our oncology departament kept him on TMZ.
He also had immunotheraphy from Jan2017 - hypothermia and NCV then DCVax and later also Keytruda.
A lot of tiny steps. For example I was trying to find studies for which types of bateria types in gut microbiome the response for Keytruda is better and we were suplementing them.
During first year he also started nasal inhalations with perillyl alcohol. Also ECCG hat. He tried DCA, Sativex.
He had over three years without signs of disease. He got back to his work.
Then Dec 19 progression- second surgery, stereotacitic radio, temodal rechallange, lomustine without good results.
I want to thank Stephen for his commitment and energy he put into this site and all of you who share experiences with this disease.
I am in awe what human can bare and what a gift life is.
Thank you.
Patricia
Thanks so much for sharing your story Patricia. If this blog helped you find information that contributed to his three disease-free years, then it was all worth it. I think you're right that with standard treatments we can expect only standard results - I was unwilling to accept that for my friend and was the whole reason I started to research and eventually started this blog. I am inclined to believe that it was due to all of your efforts with non-standard treatments over and above the standard ones that led to his having a couple extra years of what sounds like an acceptable quality of life. I can only imagine the sense of loss you are feeling - and I've also seen that sometimes the greatest losses can lead to the greatest realizations about the preciousness of life. And that is something nobody can take away.
ReplyDeleteMy heartfelt best wishes to you during your next stage on this journey called life.