We're moving! (again)

I have begun a new journey once again this week.

As some of you are aware, I did not have a good follow up with my oncologist last month regarding my most recent MRI. There were some noticeable changes in my MRI that could not be distinguished between post-treatment effects and/or tumor growth. These changes prompted my oncologist to recommend I look into joining a trial for recurrent anaplastic astrocytoma in people who have previously undergone surgery, temodar, and radiation treatment. The study, is funded by Orbus Therapeutics (A biopharmaceutical company). The STELLAR study, involves the use of an experimental drug called Eflornithine, which is given in conjunction with lomustine to inhibit the growth of certain enzymes within the cancer cells. Now, the fact that he jumped right into this conversation set off a few red flags for me, but I was willing to hear him out. Jeramy and I began with an onslaught of questions almost immediately. The first being, does this involve chemotherapy? The doctor immediately responded, no, and began to explain what specifically Eflornithine was. I asked him to explain everything I could think of, particularly....what is the quality of life of the patient's on this trial? What kind of success rate are we looking at with this treatment IF I receive the experimental drug? Can this cure me (and not in your 5 year survival rate BS term, but in the actual cure that will allow me to live until I'm 80 or 90). 

With each question, I became more and more suspicious of this doctor's motivations. I started asking myself, if the growth is too small for me to be a surgical candidate, why are we already jumping into these majorly aggressive treatment techniques? This isn't adding up for me. I began to ask more questions regarding the study, to which, ultimately, the Oncologist did not have any more information about. The information I gained from him regarding the study, is that they weren't looking to reverse tumor growth, just stop it with the experimental drug. Furthermore, the treatment lasts for 1 year and there is only a 50% chance you will receive the experimental drug. Every one in the study, will, however, receive Chemotherapy. The other thing about the study included that the treatment wasn't a cure and that it basically involved me likely having to be on this treatment to control tumor growth for the rest of my life. Also, it did not change survival outcomes in the short term and not enough information was available regarding long term outcomes (which is ultimately what the study aims to analyze). Here is the link to the drug company website if you are interested in reading more about the STELLAR study. http://www.orbustherapeutics.com

When we left the Oncologists office, naturally I was in complete panic mode. My Oncologist knew that I was not interested in participating in chemotherapy if it can be avoided, and I absolutely refuse to do radiation again. Despite these wishes, he chose to push the chemo route anyway. It made me livid. So much so, that I decided to look into the Oncologist a little more. Turns out, he's big into getting his name on research related to Brain Tumors and treatment. Now, don't get me wrong. He's a damn good Doctor. He's had extensive training and has been named one of the top doctors in America according to his site bio. His focus has been on researching treatments for brain tumors specifically, so the guy knows his stuff, no doubt. 

Keep in mind that this is the second time I am facing this type of news and that I have already been through treatments that cost upwards of 50-60,000 US. My experience over the past two years has been that conventional medicine has brought me virtually no quality of life, but has actually taken it away. It is not the "gold standard" they hype it to be and I'll be damned if I jump into it again without much thought and consideration for alternatives. Now, I know some of you who have extensive medical backgrounds, and you probably think I'm crazy. My only comment to you, is that I hope you never get Brain Cancer; or any other cancer for that matter...but if you do find yourself with a Brain Tumor, ONLY then can you comment on my choices and decisions. Until that time I ask politely that you keep your mouth shut, because YOU are not the one making these decisions and facing these realities. If that offends you, I encourage you to stop reading my blog because everything I do from here on out, will likely go against everything you believe to be correct. 

So, faced with this decision, I have chosen to inquire a second opinion from MD Anderson in Houston and then Jeramy and I will be relocating to the Denver, Colorado area in December to seek out alternative treatment options for this possible recurrence. I say possible, because the MRI report mentions that they can't tell if it is tumor or post-treatment changes and so I want MD Anderson to weigh in. I have spoken with a fellow brain tumor survivor who states that the same thing happened to him and it turned out to be nothing, but did bump his MRI schedule back up to every 3 months. He is currently 2-3 weeks into a 90 day treatment for Brain tumors using a type of Rick Simpson Oil, which is made from the marijuana plant. The treatment involves working up to ingesting 1 gram of a 1:1 ratio of CBD/THC a day over a 90 day time frame, for a total of 60 grams of the mixture. I have read countless testimonials on this. They are mostly using it to treat Glioblastomas, but have seen success in all types of gliomas at this time. They have even discovered that using this in conjunction with chemotherapy helps the chemotherapy better target cancer cells and helps to protect healthy cells. The best thing about it? Less side effects from chemo. 

If you would like to know more, I encourage you to research into this yourself and I would be happy to point you in the right direction. 

As it stands, I will likely put out another blog post after my visit to MD Anderson on 11/10/2016 with any additional or updated information.