Closing in on 12-18 months

As I approach the 12-18 Month window that most people survive GBM, and the 1-2 year window when most have a recurrence, I have found myself becoming more anxious. A false positive MRI was the catalyst for anxiety that seems to eb and flow. So, I start working with a counselor next week, to help with the anxiety, but I need to do something more to feel empowered that I am doing everything I can to have the best possible outcome.

For this I looked to long term survivor Cheryl Broyles. Sheryl has been battling GBM Recurrences for  20 years on multiple fronts. You can learn more about that here:

I am still figuring out what this would look like for me, but Cheryl's page is giving me a lot to work with. Here is what I know so far

"Standard" Treatments:

• Craniotomy: Full removal of the tumor
• Clinical trial protocol ABTC-1603: This is the cold virus engineered to kill cancer
• 6 weeks daily proton therapy: m-f
• 6 weeks daily chemo (Temedor)
• 6 weeks Immunotherapy(Valacyclovir)
• rest for 2 months
• Begin 12 rounds of Maintenance Temedor 5 days on, 23 days off)
• Monthly Liquid Biopsy to monitor progress (Halted during coronavirus)
• Brain MRIs every 2 months to monitor progress.

Boosting Immune system: Consult scheduled with Patrice Surely. Who Cheryl and many other long term survivors use for immune boosting supplements.

Affecting Metabolism: The nutritionist at my cancer center would not give me a consult on Keto, because there have been no clinical trials, just anecdotal evidence. That being said, I know someone whose lung cancer shrunk on Keto alone, And you can find many other examples in the Keto for Cancer book, and across GBM circles. My hope is that this is an area that Patrice can help me with as well.

Natural/alternative treatments: I plan to start looking into Acupuncture. CBD oil is  possibility, but need to talk to my dr about it.

Off Label Medications:  Ben A. William, a long term brain tumor survivor, wrote a book called “Surviving Terminal Cancer – clinical trials, drug cocktails, and other treatments your oncologist won’t tell you about” giving examples of off-label prescriptions that could be used to potentially fight the brain tumors. I just moved this to the top of my reading list.

Attitude:  No matter what you hear in your support groups, a positive attitude does not cure cancer, and it is OK to not be OK. That being said, living in that place of fear and anxiety isn't healthy for anyone, but especially when fighting GBM. Check out Cheryl's page on "Learning to Live" . I couldn't say anything better than she did, so just check out how she compares her hike up Mt. Shasta to fighting cancer. Its really good.

for me (And for Cheryl under her section on hope), I put my faith and trust in Jesus Christ. Though tomorrow is promised to no one (GBM or not), Christ does promise to make all things work together for the good of those who love Him according to His purposes. He is the source of my comfort, peace, and joy ... even in the midst of this broken and fallen world where cancer is possible.