NET Athletes: Amazing people who inspire others who wish to continue with their athletic endeavors after receiving a NET diagnosis.
Mary M.
My passion for running began as a child when my dad took me out to the local park for my first run. I was hooked immediately. From there, my team and I enjoyed many successes in both high school and college. Unfortunately, I drifted from running after college for a few years and then struggled for many years with failed attempts to restart my running due to bilateral knee pain. It was not until my PNET diagnosis in 2017, at the age of 46, that I promised myself I would race again. While at my first Neuroendocrine Conference at the University of Pennsylvania I approached a table with information about the “Run for the Stripes”. This was going to be my race. I did everything I could to protect my knees but sadly the pain was still there. I was able to race anyway with my daughter beside me for the first half of the race. With great pride, I watched her slowly pull away from me for a strong finish. It was a great day for both of us. Fortunately, I recently discovered that a simple switch of running shoes was all I needed to relieve my knee pain. Now I am running strong. Running has always been my passion but now each run means so much more to me than it ever has before. Not only does running keep me strong in mind and body, it has connected me with so many amazing people throughout my life.
Jess G.
I am 32 yrs. old, married and have an Australian herding dog mix named Delilah. I was born and raised in Lancaster County PA. I grew up playing soccer and basketball and swam on the swim team. I got my first taste of distance running my senior year when I decided to sign up for the cross country team. I really enjoyed it and found it to be a great stress reliever. I started to run competitively in 2005. One of my co-workers decided to challenge us to a guys vs. girls half marathon run. Once I completed my first half marathon I was hooked on running. Since then I have run anything from a 5k to a 100mi race.
Running literally saved my life. Runners usually are pretty in tuned to their bodies and I believe that is why I had a fairly quick diagnosis. After multiple trips to the doctor complaining of vague symptoms like wheezing and a strange feeling when I would lie down, I was finally diagnosed with a carcinoid tumor in my left lung in February of 2012. On March 9th, 2012, I had a left upper lobectomy and one month later I was allowed to start running again. I didn’t let surgery and my diagnosis get me down. In fact, it gave me even more incentive to be a better runner. It also gave me a better appreciation for running and I knew I would never take running for granted again! I am a member of the Pagoda Pacers Running Club in Reading, PA. I run with a great group of people and they really helped support and encourage me during my diagnoses and recovery from surgery. Running has made me a confident person and has also allowed me to meet so many great people. In addition, I have been able to experience many of God’s beautiful creations out on the trails while running. My most recent endeavor, just one year and two months after my left upper lobectomy was the Massanutten 100mi trail run in Massanutten, VA. Massanutten was an amazing race with awesome volunteers at the aid stations and I had an awesome crew who supported me throughout the race. The camaraderie out on the trail is unexplainable. My next goal is to do an Iron Man and eventually I hope to follow in my uncles footsteps and take on the Kailua-Kona Island Iron Man in Hawaii, the world’s most prestigious triathlon. I will see everybody in November at the race!
Note: Jess came in first place overall at last years Run For The Stripes 5K.
John W.
John was diagnosed with neuroendocrine cancer in July of 2008. At the time of diagnosis, the tumors had already metastisized. The right lobe of his liver was fully engrossed and it had spread to the left lobe of his liver as well. The tricuspid and plumonic valves were also damaged by the tumors, causing right heart failure. John underwent more than one major surgery to tackle his tumors, first in September of 2008 to have his tricuspid and pulmonic valves replaced, and again in February of 2009 when he had a large right liver resection and the tumor in the left lobe of the liver ablated. In addition to all of that, he underwent a right hemicolectomy – transverse colon to ileum. A couple of years later he had prostatectomy due to cancer. Through all of this John has stayed active.
John, 63 years young, uses exercise to stay fit and healthy and, as he says, “hopefully one step ahead of the disease.” He stays in shape by alternating workouts, running 1.5 – 2 miles one day and lifting weights the next. He has registered for this year’s Run For The Stripes 5K and is encouraging his friends to participate as well.
Rick M.
I have had Carcinoid Syndrome for 18 years and probably quite a few years prior to that (of which I was unaware). I was diagnosed at age 57 and I am now 75 years old. Aside from the many doctor’s appointments and procedures I have been able to continue all my activities. I have been and remain active playing tennis, golf, woodworking, gardening and keeping up with five grandchildren.
I was diagnosed with Carcinoid Syndrome in December of 1995. I had tumors in my terminal ileum and also in a significant portion of my liver. In February of 1996 I was operated on and three feet of my terminal ileum were removed and three quarters of my liver was also removed. I had no symptoms of recurrence of the cancer until February of 2000. I then started Sandostatin LAR Depot to control my symptoms. The tumors in my liver continued to grow and in the spring of 2008 I had a SIRsphere procedure in my liver (a liver embolization procedure using small spheres laced with yttrium 90). This procedure reduced the tumor size somewhat. However, with time the tumors continued to grow and I had a second SIRsphere procedure in June of 2010. Again the tumors where reduced somewhat but ultimately continued to grow. As the tumors grew in my liver they also began to appear in my spine. At this point it was decided I go to Basel Switzerland for a DOTATOC (http://en.wikipedia.org/wiki/Edotreotide)systemic procedure using yttrium 90 radiolabeled octreotide. I had the DOTATOC yttrium 90 procedure in August and again in October of 2012. I received about ¾ of the normal dose because I typically have a low white blood count. The result of the DOTATOC procedure has been a small reduction in tumor size. However, I still have facial flushing. I have been taking 30 mg of Sandostatin LAR Depot every four weeks and the plan now is to take the 30 milligram infusion every three weeks to see if the flushing can be better controlled.
As indicated above I feel fine and my activities are not limited. The two effects of carcinoid syndrome are flushing and diarrhea. We're in the process of trying to get better control of the flushing by increasing the frequency of the Sandostatin LAR Depot infusion. With regard to the diarrhea I can usually keep that under control by strictly sticking to a very simple diet. Some restaurant food particularly sauces do cause diarrhea. I am therefore somewhat limited with regard to travel.
Mary M.
My passion for running began as a child when my dad took me out to the local park for my first run. I was hooked immediately. From there, my team and I enjoyed many successes in both high school and college. Unfortunately, I drifted from running after college for a few years and then struggled for many years with failed attempts to restart my running due to bilateral knee pain. It was not until my PNET diagnosis in 2017, at the age of 46, that I promised myself I would race again. While at my first Neuroendocrine Conference at the University of Pennsylvania I approached a table with information about the “Run for the Stripes”. This was going to be my race. I did everything I could to protect my knees but sadly the pain was still there. I was able to race anyway with my daughter beside me for the first half of the race. With great pride, I watched her slowly pull away from me for a strong finish. It was a great day for both of us. Fortunately, I recently discovered that a simple switch of running shoes was all I needed to relieve my knee pain. Now I am running strong. Running has always been my passion but now each run means so much more to me than it ever has before. Not only does running keep me strong in mind and body, it has connected me with so many amazing people throughout my life.
Jess G.
I am 32 yrs. old, married and have an Australian herding dog mix named Delilah. I was born and raised in Lancaster County PA. I grew up playing soccer and basketball and swam on the swim team. I got my first taste of distance running my senior year when I decided to sign up for the cross country team. I really enjoyed it and found it to be a great stress reliever. I started to run competitively in 2005. One of my co-workers decided to challenge us to a guys vs. girls half marathon run. Once I completed my first half marathon I was hooked on running. Since then I have run anything from a 5k to a 100mi race.
Running literally saved my life. Runners usually are pretty in tuned to their bodies and I believe that is why I had a fairly quick diagnosis. After multiple trips to the doctor complaining of vague symptoms like wheezing and a strange feeling when I would lie down, I was finally diagnosed with a carcinoid tumor in my left lung in February of 2012. On March 9th, 2012, I had a left upper lobectomy and one month later I was allowed to start running again. I didn’t let surgery and my diagnosis get me down. In fact, it gave me even more incentive to be a better runner. It also gave me a better appreciation for running and I knew I would never take running for granted again! I am a member of the Pagoda Pacers Running Club in Reading, PA. I run with a great group of people and they really helped support and encourage me during my diagnoses and recovery from surgery. Running has made me a confident person and has also allowed me to meet so many great people. In addition, I have been able to experience many of God’s beautiful creations out on the trails while running. My most recent endeavor, just one year and two months after my left upper lobectomy was the Massanutten 100mi trail run in Massanutten, VA. Massanutten was an amazing race with awesome volunteers at the aid stations and I had an awesome crew who supported me throughout the race. The camaraderie out on the trail is unexplainable. My next goal is to do an Iron Man and eventually I hope to follow in my uncles footsteps and take on the Kailua-Kona Island Iron Man in Hawaii, the world’s most prestigious triathlon. I will see everybody in November at the race!
Note: Jess came in first place overall at last years Run For The Stripes 5K.
John W.
John was diagnosed with neuroendocrine cancer in July of 2008. At the time of diagnosis, the tumors had already metastisized. The right lobe of his liver was fully engrossed and it had spread to the left lobe of his liver as well. The tricuspid and plumonic valves were also damaged by the tumors, causing right heart failure. John underwent more than one major surgery to tackle his tumors, first in September of 2008 to have his tricuspid and pulmonic valves replaced, and again in February of 2009 when he had a large right liver resection and the tumor in the left lobe of the liver ablated. In addition to all of that, he underwent a right hemicolectomy – transverse colon to ileum. A couple of years later he had prostatectomy due to cancer. Through all of this John has stayed active.
John, 63 years young, uses exercise to stay fit and healthy and, as he says, “hopefully one step ahead of the disease.” He stays in shape by alternating workouts, running 1.5 – 2 miles one day and lifting weights the next. He has registered for this year’s Run For The Stripes 5K and is encouraging his friends to participate as well.
Rick M.
I have had Carcinoid Syndrome for 18 years and probably quite a few years prior to that (of which I was unaware). I was diagnosed at age 57 and I am now 75 years old. Aside from the many doctor’s appointments and procedures I have been able to continue all my activities. I have been and remain active playing tennis, golf, woodworking, gardening and keeping up with five grandchildren.
I was diagnosed with Carcinoid Syndrome in December of 1995. I had tumors in my terminal ileum and also in a significant portion of my liver. In February of 1996 I was operated on and three feet of my terminal ileum were removed and three quarters of my liver was also removed. I had no symptoms of recurrence of the cancer until February of 2000. I then started Sandostatin LAR Depot to control my symptoms. The tumors in my liver continued to grow and in the spring of 2008 I had a SIRsphere procedure in my liver (a liver embolization procedure using small spheres laced with yttrium 90). This procedure reduced the tumor size somewhat. However, with time the tumors continued to grow and I had a second SIRsphere procedure in June of 2010. Again the tumors where reduced somewhat but ultimately continued to grow. As the tumors grew in my liver they also began to appear in my spine. At this point it was decided I go to Basel Switzerland for a DOTATOC (http://en.wikipedia.org/wiki/Edotreotide)systemic procedure using yttrium 90 radiolabeled octreotide. I had the DOTATOC yttrium 90 procedure in August and again in October of 2012. I received about ¾ of the normal dose because I typically have a low white blood count. The result of the DOTATOC procedure has been a small reduction in tumor size. However, I still have facial flushing. I have been taking 30 mg of Sandostatin LAR Depot every four weeks and the plan now is to take the 30 milligram infusion every three weeks to see if the flushing can be better controlled.
As indicated above I feel fine and my activities are not limited. The two effects of carcinoid syndrome are flushing and diarrhea. We're in the process of trying to get better control of the flushing by increasing the frequency of the Sandostatin LAR Depot infusion. With regard to the diarrhea I can usually keep that under control by strictly sticking to a very simple diet. Some restaurant food particularly sauces do cause diarrhea. I am therefore somewhat limited with regard to travel.