Pancreatic cancer treatment trials in Quebec
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My name is Joel Manzevich, I’m 51 years old and I live in Sooke, BC. I’m being faced with something I thought I would not have to consider, in a real way, until many years from now: my own demise. I have terminal cancer and I would like to share my story. I have been diagnosed with Stage 4 pancreatic neuroendocrine cancer. This is a rare type of tumor that arises from specialized body cells called neuroendocrine cells. These cells have traits of both nerve cells and hormone-producing cells that release hormones into the blood in response to signals from the nervous system. (You may recognize this cancer more as the type Steve Jobs had).
I am an active, motivated type of person and have enjoyed success in my career in graphic arts and with my various inventions and artistic pursuits. In hindsight, after my diagnosis of this cancer (having had it since puberty), I now can recognize and understand how I had to push through periods of fatigue and a general feeling of being unwell through many periods of my life. This feeling of being unwell was emphasized by a stroke at age 35 that was not attributed to my cancer until many years later.
In the Fall of 2017 my illness came to a debilitating head. After many months of doctor visits trying to get answers for a tremendous fatigue and getting no resolution, I came to a terrifying point of literally being unable to get up off the floor. It was this point that led me to the emergency department where subsequent blood tests and scans confirmed a diagnosis of pancreatic cancer. It was a shock and not something I had ever expected to hear.
After the diagnosis of pancreatic cancer, I was referred to the BC Cancer Agency and began my odyssey. My initial hope for a cure was dashed after the devastating news that the tumor was wrapped around my pancreas, making any hope of surgery impossible. The cancer had metastasized and there was nothing that could be done short of managing my symptoms of hypercalcemia with various medications.
During one of my many appointments with my doctor to manage my hypercalcemia and cancer, I was offered a chance to participate in a research study that had a potential (small chance) of hope. Of course I jumped at the chance. This research study is called Personalized Onco-Genomics (POG). Within the study, the patient’s DNA and the cancer’s DNA are run through a super computer to compare differences. Using the comparison results, there is a small chance that something possibly could be done for the patient. The comparison of the DNA, side by side, took 4.5 months. In my case they found that, potentially, two medications would work for me. One medication would turn off the “K” switches in the cancer and “tell” it, genetically, to not replicate and the other medication would cut off the blood flow to the tumor.
Months into the research treatment I began having serious side effects which included canker sores in the mouth, gall bladder issues, severe fatigue, Candida virus in the stomach, loss of feeling in my feet, loss of appetite, severe weight loss, and internal bleeding. These side effects lead to 5 visits to the emergency department for blood transfusions. In October of 2018, I was rushed to the hospital once again but this time they discovered, with scans, that the internal bleeding was coming from my upper intestine. What had happened was that the medications had done their job and the tumor had died. Unfortunately, when the tumor died it broke apart from my pancreas which resulted in emergency surgery to remove pieces of it from the pancreas, intestine (which also had to be repaired), and my spleen, which was removed along with parts of my stomach. Following the emergency surgery, I was sent home to recover and to try and gain my weight back, which, astoundingly, I did! (Fifty pounds to date!).
During my healing from the surgery, my oncologist told me about a new treatment opportunity called Lutetium 177 Octreotate Therapy in Quebec City which he thought I may be a candidate for. Since then, I have been informed by the BC Cancer Agency that I am a perfect candidate for the new treatment after having been rigorously scanned and tested by very expensive and highly technological equipment which I had to travel to Vancouver for. The new treatment opportunity, which I am told has a very high success rate, will cure the rest of my cancer which involves an 8cm tumor on my liver. The treatment involves going to Quebec City every two months, for a week’s stay each trip, for a total of four trips over eight months. Fortunately, the BC government will cover the $100,000 treatment costs; however, I am responsible for all other costs which include flights, accommodation, meals and sundries. Unfortunately, I cannot cover these costs on my own.
I have made my own way all of my life. Wretchedly, I have cancer. That is a fact that I cannot change. I have never asked anyone, in my life, for anything. However, at this time, I need financial assistance to save my life. This is very hard for me to ask for help but I want to live. I have much to offer to life and appreciate every day and do not waste a single moment. I understand if this new treatment in Quebec is successful (and I’m told it will be) that the BC Cancer Agency will have a business case to bring this treatment to British Columbia so that others with cancer may enjoy a full life. If this happens, then there is hope for all of us!
I am an active, motivated type of person and have enjoyed success in my career in graphic arts and with my various inventions and artistic pursuits. In hindsight, after my diagnosis of this cancer (having had it since puberty), I now can recognize and understand how I had to push through periods of fatigue and a general feeling of being unwell through many periods of my life. This feeling of being unwell was emphasized by a stroke at age 35 that was not attributed to my cancer until many years later.
In the Fall of 2017 my illness came to a debilitating head. After many months of doctor visits trying to get answers for a tremendous fatigue and getting no resolution, I came to a terrifying point of literally being unable to get up off the floor. It was this point that led me to the emergency department where subsequent blood tests and scans confirmed a diagnosis of pancreatic cancer. It was a shock and not something I had ever expected to hear.
After the diagnosis of pancreatic cancer, I was referred to the BC Cancer Agency and began my odyssey. My initial hope for a cure was dashed after the devastating news that the tumor was wrapped around my pancreas, making any hope of surgery impossible. The cancer had metastasized and there was nothing that could be done short of managing my symptoms of hypercalcemia with various medications.
During one of my many appointments with my doctor to manage my hypercalcemia and cancer, I was offered a chance to participate in a research study that had a potential (small chance) of hope. Of course I jumped at the chance. This research study is called Personalized Onco-Genomics (POG). Within the study, the patient’s DNA and the cancer’s DNA are run through a super computer to compare differences. Using the comparison results, there is a small chance that something possibly could be done for the patient. The comparison of the DNA, side by side, took 4.5 months. In my case they found that, potentially, two medications would work for me. One medication would turn off the “K” switches in the cancer and “tell” it, genetically, to not replicate and the other medication would cut off the blood flow to the tumor.
Months into the research treatment I began having serious side effects which included canker sores in the mouth, gall bladder issues, severe fatigue, Candida virus in the stomach, loss of feeling in my feet, loss of appetite, severe weight loss, and internal bleeding. These side effects lead to 5 visits to the emergency department for blood transfusions. In October of 2018, I was rushed to the hospital once again but this time they discovered, with scans, that the internal bleeding was coming from my upper intestine. What had happened was that the medications had done their job and the tumor had died. Unfortunately, when the tumor died it broke apart from my pancreas which resulted in emergency surgery to remove pieces of it from the pancreas, intestine (which also had to be repaired), and my spleen, which was removed along with parts of my stomach. Following the emergency surgery, I was sent home to recover and to try and gain my weight back, which, astoundingly, I did! (Fifty pounds to date!).
During my healing from the surgery, my oncologist told me about a new treatment opportunity called Lutetium 177 Octreotate Therapy in Quebec City which he thought I may be a candidate for. Since then, I have been informed by the BC Cancer Agency that I am a perfect candidate for the new treatment after having been rigorously scanned and tested by very expensive and highly technological equipment which I had to travel to Vancouver for. The new treatment opportunity, which I am told has a very high success rate, will cure the rest of my cancer which involves an 8cm tumor on my liver. The treatment involves going to Quebec City every two months, for a week’s stay each trip, for a total of four trips over eight months. Fortunately, the BC government will cover the $100,000 treatment costs; however, I am responsible for all other costs which include flights, accommodation, meals and sundries. Unfortunately, I cannot cover these costs on my own.
I have made my own way all of my life. Wretchedly, I have cancer. That is a fact that I cannot change. I have never asked anyone, in my life, for anything. However, at this time, I need financial assistance to save my life. This is very hard for me to ask for help but I want to live. I have much to offer to life and appreciate every day and do not waste a single moment. I understand if this new treatment in Quebec is successful (and I’m told it will be) that the BC Cancer Agency will have a business case to bring this treatment to British Columbia so that others with cancer may enjoy a full life. If this happens, then there is hope for all of us!
Organizer
Joel Manzevich
Organizer
Sooke, BC
