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I understand that many of you are wondering exactly what is going on with me medically. I also understand that there are some of the information out there is simply incorrect or misleading. So, I wanted to set the record straight.
I have been diagnosed with a rare form of cancer known as a pancreatic neuroendocrine tumor. This tumor metastasized to my liver which was discovered through a liver biopsy back in July, 2011, and confirmed through a second opinion provided through the Best Doctors Program, a free referral program offered through my union. Both my oncologist, who is at Sharp Grossmont, and the specialist brought in to consult on my case through the Best Doctors Program, believe that these tumors are a manifestation of tuberous sclerosis, a condition with which I was diagnosed back in 1979 when it was discovered through a CT scan that I had a benign brain tumor. This brain tumor was monitored for years until 1993 when problems necessitated the insertion of a ventricular-peritoneal shunt (VP Shunt) at the Massachusetts General Hospital. My condition stabilized after my surgery and I remained asymptomatic until late June 2011 when high fevers brought me to Grossmont Hospital at which time a scan of my abdomen revealed the presence of tumors on my liver and pancreas. A series of high fevers (as high as 105.6) accompanied by a dangerous drop in blood pressure, landed me in the hospital for a total of 30 days over six, separate admissions. In addition, during my initial hospitalization, it was determined that I had contracted ecoli which was successfully treated through antibiotics. However, to date, the doctors have been unable to explain the reason for or origin of these fevers, referring to them as simply febrile illness. Fortunately, since my last discharge, August 24, I have be largely fever- and symptom-free.
My current course of treatment consists of a daily pill, known as Afinitor (everolimus), a drug approved by the FDA for the treatment of neuroendocrine tumors within the last 2.5 years, and a monthly injection Sandostatin (Octreotide), a hormone. This combination of treatment, designed to shrink the tumors and limit their metastasis, has only been in use for about 2.5 years, but has had shown positive clinical results. Ironically, Afinitor has also been approved for treatment of brain tumors in patients with tuberous sclerosis.
Since I have been on regular treatment, I have gained weight, have returned to work, and have remained symptom-free.
I do not have liver or pancreatic cancer.
My condition is treatable, manageable, but not curable. I will never be in remission. My treatment is referred to as progression-free therapy.
My tumors are low-grade, well-differentiated, and non-functional (they are not giving off hormones), all of which play in my favor. My oncologist feels that, because my tumors are a manifestation of tuberous sclerosis, my prognosis is quite favorable.
Genetic testing showed that my tuberous sclerosis is not genetic, but rather a random mutation.
I am the only patient that my oncologist has on this course of treatment. Because this treatment protocol is very new, longitudinal studies do not exist at this point to fully document its efficacy.
Tuberous sclerosis is rare. Neuroendocrine tumors are rare. Malignant neuroendocrine tumors associated with tuberous sclerosis are even rarer. I am, truly, a rarity.
Wow. I remember the sunny day on the grassy solfball fields when you first told about the time you blacked out. the memories that you would never have, time that was lost forever ate up by something slightly unknown.
ReplyDeleteYou were and always will be special in best part of my soul reminding that heroes do exist.
You have thousands of people and students that come in and run out of your life every year, but Mr. Myette...oh wait you always disliked being called that name...that was your father's name...well "Myette" you were my only Myette. You are among my most favorite inspirations, not being nice because you are all cancery, I mean it. You inspired me to be stronger, you helped me to speak, you allowed me to be open in the toughest times of my life....not so tough now that I think back, but I could have been someone worse, but you were one of the few that caught me before I let hope go. Thank you my dearest friend, my once coach, my forever Myette.