The results are in and I'm a mutant!

It's been a crazy week but certainly not in a bad way. At this moment I just woke up from a much needed nap (don't ask, don't tell Dr. No Naps) and now finally getting around to updating everyone, as I've been wanting to for a few days. You might remember that we saw No Naps on 3/11 and we were told that they were working on some things and to stay in town for a few days. Then, suddenly, without explanation, an appointment for "chemotherapy treatment" appeared on my schedule for 3/22. We sat. We waited. We tried to distract ourselves. I could not restrain myself too long before sending an email asking what was happening and "should I stay or should I go now?" (cue The Clash). The reply email was that we had a lot to talk about and that they had several options, one of which was most promising, and it wasn't the treatment we had previously discussed on 3/11.

Let's review a bit of history so we can better understand what's happening with this exciting new turn of events. After each surgery, they have removed some tissue (in some surgeries a bit more than others). That tissue is always sent off for molecular and genetic analysis. The analysis tells how much of the tumor is cancer and how much is necrotic (dead) tissue, whether there are any genetic markers/proteins/mutations/etc. that they can target, and whether the cancer itself has changed over time. Let me explain a bit further. Each tumor is different. Each person's tumor is different. Within a person each tumor is different. Within a tumor within one person, there are many different types of cells. Hence, why they call it Glioblastoma Multiforme (GBM). My first tumor in 2/2016 was GBM, IDH-1 wild type (by the way, this is the worst subtype with the shortest life expectancy and the worst outcomes), with zero markers/proteins/things to target with treatment. Second surgery showed 85% necrosis and 15% cancer cells, which was good, but still no mutations. You see, after my initial surgery and then chemo and radiation, some cancer cells were damaged. We called that post-treatment necrosis. Although some of those damaged cells may go into programmed cell death (also known as apoptosis), meaning they kill themselves. Cell suicide is a natural occurrence for damaged cells all over your body, but cancer cells didn't get the memo and don't go into apoptosis.

You may remember before my most recent and third surgery, I asked for prayers, positive energy, your choice of positive vibes for proteins or mutations to target. I think one of my loyal readers, Retha, said it best in the comments when she called them "little flags" on the cancer cells that can alert the medicine: "this is a cancer cell- attack!" So, basically, these mutations and markers simply allow certain types of medications to "see" the cells as cancer as opposed to healthy cells and then the medicine goes in and puts them in a choke hold until they die.

So here's the exciting part. My analysis for this surgery came back. All of the treatment I have had over the last 3 years has finally resulted in a mutation on a cancer gene. Not only that, but it's a mutation they understand well. Let's start with the basics. This mutation is on a gene called BRAF. This will not be on the test. BRAF mutations are frequently found in melanoma and lung cancers. The awesome part of this story is that oncology has a combination drug that targets this gene mutation in those cancers with great success. Further, we've found case studies on adult and child GBM patients who have also seen much success with these treatments. For example, a case study of a nine year old showed zero progression over four years out from initial treatment with the BRAF mutation. Also, a friend from one of my online groups has a friend who had the BRAF mutation at initial diagnosis, she is being treated, and she is doing great five years out. If those two anecdotal cases are going that well with this treatment and I've got my three years with all of my anti-inflammatory/anti-stress regimens, the combination should be spectacular! So, what does this treatment do, you ask? 

Let's first re-familiarize ourselves with the basics of all cancers. Cancer cells start out as normal, healthy cells. No one seems to know exactly how or why (although we all have theories involving chemicals, cell phones, chem trails , stress, and government conspiracies) these cells go rogue and become cancer cells. I will skip the part about how cancer cells have messed up mitochondria and how that disrupts normal cell function). Anyway, back to our story. All cancer cells share these 2 characteristics: 1) they divide like crazy, so much faster than normal healthy cells. GBM cells and other aggressive cancers divide faster than slow growth cancers. When you have enough of these divided cells clumped together, you have a tumor 2) they don't typically go into apoptosis (programmed cell death, see above) like they are supposed to . So, keep those two things in mind as we go through what the medication does because this next part will be on the test. 

The BRAF gene in cancer cells is involved in the dividing process, which, as you recall, is all screwed up in the cancer cell. They have one drug that goes after that mutated BRAF gene and messes with it so that the cancer cell stops (or at least slows down) the division (also called proliferation). Therefore, the cell can't divide or at least can't divide as aggressively. The second drug is administered and what does it do? It attacks those same cells with its superpowers and convinces the cells to go into programmed cell death. It's as if one hit man goes in, breaks a knee or two, and then the second hit man goes in after the cell is all down and out to convinces it to commit suicide. A one-two punch! I knew taking the name Rinaldo would come in handy one day!

Randomly enough, I had met a woman at the Metabolic Therapeutics conference in California a few weeks back who is a lung oncologist at a very prominent hospital that has been in the news a lot because of recent successes with many types of cancer, including GBM. I won't say where because it's the school that UK alumns are not allowed to mention. We will call it the university that shall not be named. My new friend had given me her contact info and asked me to let her know my results. I texted her when I heard about the results and treatment, especially since this is a mutation and treatment more common in lung cancer. She said, "Awesome news!" Then she went on to say that she has used this basic treatment (maybe not exactly the same drugs but basically the same) and has had "great success." The only warning she had was that it can be hard on the skin and that I should be very careful about lesions and use a very good moisturizer all over. I need to start interviewing the equivalent of a young, hot pool boy to apply my moisturizer. If you know of anyone looking for a job who fits that description, has two hands, is coordinated,and will bring me coffee, I will be accepting applications soon. The job doesn't pay that well, but they get to hang out with me and laugh at my jokes so that's a HUGE perquisite. 

Jason and Aidan went home on Friday and I've been having one adventure after another in Houston. Tomorrow I fly home for about 24 hours for a work thing and then I get back in plenty of time to rest up for your test on Friday.