No news from Dr. Zu yet regarding my bone scan. No news is good news, right?
Here's to a healthy and happy 2012.
Stay tuned for updates!
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Friday, December 30, 2011
Saturday, December 24, 2011
Why Not Surgery?
Some of you have asked me why I haven't had surgery to remove the tumors. Surgery is an option, of course, but one that would seriously compromise the quality of my life. The current course of treatment that I am on, the combination of Afinitor and Sandostatin, is considered to be the most current, most effective, and least invasive treatment I can be on. If I were diagnosed even three years ago, I would have already have had surgery. I am fortunate that I have access to the best course of treatment available.
Friday, December 23, 2011
Bone Scan Today!
Had bone scan today at Grossmont Hospital. Pretty easy procedure. See bone scan for further information on the procedure. Should know the results pretty soon.
Wednesday, December 21, 2011
Bone Scan
Last CT scan showed some bone lesions that Dr. Zu wants to check out through a bone scan to rule out possible malignancy.
These bone lesions, referred to as sclerotics, are one of the diagnostic criteria for tuberous sclerosis. In most cases, they are benign.
As Dr. Zu stated, "Radiologist A didn't comment on the presence of the sclerotics, but Radiologist B did." So, I will be getting them checked out this week.
Scan is scheduled for Friday.
Check back here for results.
These bone lesions, referred to as sclerotics, are one of the diagnostic criteria for tuberous sclerosis. In most cases, they are benign.
As Dr. Zu stated, "Radiologist A didn't comment on the presence of the sclerotics, but Radiologist B did." So, I will be getting them checked out this week.
Scan is scheduled for Friday.
Check back here for results.
Saturday, December 17, 2011
Sandostatin Injection
Got monthly injection of Sandostatin (Octreotide) on Thursday. Experiencing typical stomach issues and minor irritation at injection site. Par for the course. Immodium helps as does fiber supplement. These side effects usually dissipate after a few days.
Update December 2011
MRI and CT scans of December 2011 show roughly a 30% reduction across the board in tumor size, including my brain tumor.
What is going on with me?
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.
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.
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