Glioblastoma: Facts, Notes and Ponderings…

Fact: John was diagnosed with primary, unmethylated wildtype glioblastoma multiforme, a grade 4 brain cancer. Aka: GBM.

Fact: GBM is always grade 4. They do not use stages in brain cancer, much less “stage 4.” Primary GBM originates in the brain as GBM. Secondary GBM brain cancer is when you start out with a different kind of cancer and it mutates to GBM. All GBM, primary and secondary, is grade 4.

Fact: GBM is specifically a series of DNA errors that involves nearly every foundational cell of the brain, including stem cells. Cells which by their very nature are very “fertile” and good at replicating quickly. It’s not just one error or even 2, but a complex series.

Theory: They think that for some reason, perhaps due to some sort of crisis, some part of the regular system of the human body slips up and doesn’t do its job. Like a gear missing a beat or a tire spinning out. And something does not happen in the order it’s supposed to. Suddenly multiple DNA errors are created.

Theory: In the case of secondary GBM, the argument can be made that it’s the first type of cancer that wasn’t GBM that creates the crisis that allows the GBM DNA error series to be created.

Fact: Fighting all other brain cancers grade 1-3 is not only easier and more successful, but the survivability of the patients are also vastly different on the whole. GBM is a different kind of brain cancer from all others. And there is usually more time to treat grades 1-3. Average mean life span of grade 3 brain cancer is 10 years or so.

Fact: Dietary treatments that extend the life of patients with lesser grades of brain cancer will shorten the life of a grade 4 brain cancer patient. Studies have proven that GBM is biologically a very different kind of cancer.

Opinion: People joke that calling GBM cancer might be a disservice. And that if we looked at it as a disease from space, or an engineered computer virus, we might be better off so we stop comparing it to “average” cancer.

Fact: The problem is, once that particular series of DNA errors that is known as GBM is created, it does not die. In fact, it could be considered immortal. And the error exists on the micro-cellular level.

Theory: Some argue that it’s like a program or a blue-print that once your body has created it, it can’t forget and stop creating. That maybe it’s not that there are cells still there to fight, but that your body can’t forget and stop creating the error in the cells.

Fact: With the blood-brain barrier intact, it is nearly impossible for treatment to affect GBM cells. Especially because there’s so little time to get ahead of its aggressive growth.

Opinion: If there was a way to harness GBM’s immortality, it might have medical significance. But for now, it just simply follows a program and kills the patient before anyone can figure out why it even exists.

Comparison: Like a computer getting hit with a backdoor trojan. By the time you know it’s there, it’s too late. Except you can rebuild a computer.

Fact: Without treatment, the current mean survivability of a GBM patient is 3 months without treatment and 12-15 with surgery/chemo/radiation combined. A GBM tumor can double in size every 2-4 weeks.

Fact: Less than 20% of primary GBM patients survive past 2 years. Less than 5% survive past 5 years. Of those who survive longer, no one fully understands why.

Fact: the words “remission” and “cure” are never used in the GBM medical world. Medically there is no cure for GBM. No one is ever “cured.” There is no remission. There are long-term survivors. But even outliers who magically survive more than a decade later still undergo ongoing treatment and monitoring and are not considered cured. You have to have the right genetics to survive longterm with GBM and no one understands why yet.

Theory: Survivors seem to have 3 main things in common. 1) Religious faith or will to live. 2) Their youth and good health otherwise. 3) And their support network. Patients with the most support seem to be the ones who survive longer.

Personal Fact: While they do not think it causes cancer, John’s doctors say that a relationship has been found between a cancer patient’s survival and a positive attitude and focus on enjoying life and reducing stress in their lives. Negative attitudes, outlooks and fear all seem to create an environment that tend to support the spread of cancer. By far, the long-term survivors seem to be the ones that deal with their diagnosis and live/love/thrive anyway. His doctors truly mean it when they say – go LIVE, make HAPPY MEMORIES and ENJOY your life!

Fact: Nothing natural acts fast enough to fight GBM alone. By the very nature of natural approaches, they work best slowly. Combined with the standard surgery/chemo/radiation protocol, natural methods may help, but there’s no replicable proof. They can’t always prove when a trial is the reason someone lives longer.

Fact: GBM is *a* brain cancer, but it is not like other brain cancers. Other brain cancers allow more time to explore more options and try natural methods. GBM is voracious and fast. It is the fastest cancer known.

Fact: No one has yet survived primary glioblastoma long-term (2 years) on natural methods alone.

Personal Fact: John and I were already on the paleo diet for a few years prior to John’s diagnosis. John’s oncologist was actually very pleased that we use the paleo diet already. One of the biggest reasons it’s good is because it’s an anti-inflammation diet. And fighting inflammation is a helpful part of fighting cancer.

Opinion: Or is it that inflammation gets in the way of healing cancer. Remove inflammation as a possible barrier and you have a better environment to work within and better success because it’s not there to f* things up.

Fact: Researchers more recently found that while ketogenic shows promise, and is helpful to GBM patients who suffer from seizures, many GBM patients also fail to thrive because the diet is so restrictive and their bodies are overwhelmed while they undergo treatment. So they instead looked at modifying the keto diet into what is essentially paleo, but they did not focus on organic sources or some of the other philosophies on food sources that are hallmarks of paleo thought. Just the low carb, low/no grain, high fat, high vegetable diet with an emphasis on using cold-pressed coconut oil. And they found it not only worked much better but the patients could thrive. And that coconut oil in particular was key in that success.

Theory: Some people believe that blood-sugar is the problem.

Fact: Researchers discovered that diabetic patients are less likely to get GBM.

Opinion: For other cancers, it seems sugar very much so is an issue. However, the paleo/keto diet likely helps some GBM patients not because of blood sugar levels, but because of the anti-inflammation.

Fact: GBM patients have to be careful and balance their sleep and blood sugar levels to keep them from dropping too low. A drop in blood sugar or lack of deep rest can trigger seizures and stroke. Which creates more brain damage and struggle in the fight against GBM.

Personal Fact: In John’s case, they noted that his blood sugar was actually borderline low. Even while he was on steroids, which would normally cause someone’s blood sugar to be unnaturally high, John’s blood sugar was low. Low enough they cautioned us not to let his calories drop while he underwent chemo and radiation. If our regular primal/paleo diet had John’s blood sugar levels already at a low state, then there’s no way his GBM was caused by blood sugar as some would try to assert.

Reflection and Frustration: Even before officially going paleo, we had always been incredibly health conscious, eating organic as much as possible, picky about our foods and food sources and I have a literal apothecary of herbs, vitamins, minerals and natural supplements. John was a focused athlete since before joining the Guard. He never did drugs, didn’t smoke and everyone commented on the incredible health of the rest of his body. We didn’t live near mines, power stations or anything else considered to be hazardous. I’m allergic to many modern medicines and have been on the path of natural healing for most of my life because of it. And yet, in spite of John’s low blood sugar, our organic living, and all of this… we’ve found it depressing that none of this protected John from getting GBM.

Opinion: If all of this stuff about being able to treat GBM naturally or via diet were fact, this should never have happened to John.

It’s just one more proof in what we’ve been told by the researchers at MDA. GBM is a unique demon that discriminates against no one. Sadly even new babies have been victims. 😦

Personal Fact: John and I chose to pursue medical treatment, combined with natural efforts at home. Doing everything in our power that we could to uplift his/our spirits, support his liver and kidneys and overall health in general while he processed so much medicine. We added several things we’ve found genuine research on that seem to show promise in supporting regular treatment in fighting glioblastoma. And John’s oncology team allowed us nearly everything we wanted to try, even though they didn’t think it would help.

Opinion: GBM is a complex DNA issue that requires an equally complex approach to treat. And no one thing, medical or natural, is going to conquer it. It will take a hybrid approach from all fronts. If it takes a multi-pronged approach to successfully fight GBM, then regular medicine alone is not likely enough either.



Filed under Glioblastoma, NaBloPoMo

3 responses to “Glioblastoma: Facts, Notes and Ponderings…

  1. Kathleen

    Really excellent post. Thank you. I don’t know if it’s helpful to know this, but this is a lot more information than our UCLA medical team and research could provide in 2012. They may not be getting closer to a cure/meaningful treatment, but it does sound like knowledge of the biochemistry and and physiology is advancing. Peace to you.

    • Thanks Kathleen, I’m so glad this is helpful. I wrote this from my notes, when I was sorting all the information coming at me, and needing to sift it all.

      I was reading 5-6 medical studies and journal articles just about every morning with coffee during John’s 18 month fight. Just trying to understand better, looking for ideas and insight, looking for solid facts I could sink my teeth into.

      Something nice that MDA provides for patients is a library “learning center” where patients can get help help searching for studies. The volunteers there will actually help you in your search. Very nice service to include.

  2. Pingback: Day 7 – NanoPoblano – “All That Mighty Heart” by David Ellis – A Found Poem Inspired by “Composed Upon Westminster Bridge, September 3, 1802” by William Wordsworth | toofulltowrite (I've started so I'll finish)

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