In August 2013, Hofstetter performed a seven-hour surgery. She is strong and amazing. I was 51 years old, and I am 12 years post my diagnosis and surgery. !, Lori Welbourne:Ken White, Father, Diagnosed with Esophageal Cancer. I asked suspicious of what and he stated that I had cancer. Saving Lives. In the early stages of esophageal cancer, patients often do not have symptoms. His mom suggested he wake up in the middle of the night to eat crackers and drink water so hed feel better when he woke up. It starts in the tissues in your esophagus, the long muscular tube that moves food from your throat to your stomach. He went to a doctor in town (being in a remote location, healthcare providers were slim). By Thanksgiving, 2020, he tried to enjoy dinner with us, but only lasted 10 minutes at the table, horrifically choking on his food. So instead of the esophagectomy, he had a triple bypass. Enter a Fellowship position: sticky; You have to understand what its like to live with that every day.. These symptoms gradually worsen over time, with an increase in pain on swallowing, as your esophagus narrows from the growing cancer. I woke up to hear you have Esophageal cancer . He felt more tired than ever before, after some 50-years working before retirement. We got the same results. Now her quality of life is significantly better and she has more time to spend with her family. Annie is a stage 4 cancer survivor. 888-432-5464. So, they had to use other medications, which werent as effective. As I continued to read stories about those whose lives were taken by esophageal cancer, I noticed the trends in diagnosis, treatment and lack of awareness/education. Elaine's radiation was performed using the TrueBeam device. Surgery rounds out esophageal cancer treatment. They were each just 59 years old. She started a new job she was excited to throw herself into with the same passion soon after. She started an advocacy group called Esophageal Cancer Action Network. This post was originally published on January 1, 2015 on the website: On a Brighter Note by Lori Welbourne. Strangely, my heartburn went away right around the time I started having trouble swallowing. I didnt have much of an appetite.. You have to give yourself that room to grow into the new you," says Mark, who survived Hodgkin lymphoma. I spent every day and night at the hospital with him and while he was in ICU. In the United States, esophageal adenocarcinoma is more common than esophageal squamous cell carcinoma and makes . Doctors told him every 3 years for a scope was okay. Over and over again, they heard MD Anderson. That was the day my life was forever changed! The radiation started reducing my tumor then with chemo it continued shrinking. The doctor discussed with us about doing surgery, but that would narrow the esophagus even more, so it was decided to have him take an antacid pill prior to eating. Mindy Mordecai, top right, with her husband, John, center, and children, Mercer, far left, and Mara in 2008. I never thought I would be burying my sibling who was four years younger than myself. Ronald Arthur Silver (July 2, 1946 March 15, 2009) was an American actor, director, producer, radio host, and political activist. I try to keep my mind busy and my anxiety at bay. Death by Esophageal Cancer: What Happens. What I learned is that there are not many funding opportunities for esophageal cancer in the St. Louis area. Doctors said because the tumor was blocking the acid from leaving my stomach. Between 1990 and 1998, 831 patients were admitted to 14 university hospitals and one cancer center associated with the membership of the Kyushu study group for adjuvant therapy of esophageal cancer. Rectal cancer. The pain went away but the neuropathy has not. He loved to cook but he couldnt enjoy any of it himself. I wondered if we had seen it earlier if we could have kept it from eroding to that point. Working out the details with elitefeats, a race organization Im quite familiar with, helped bring the mission to life. In August of 2010, shortly after my graduation with my Master degree, my mom came to visit, and said sit down, I need to tell you something. Instantly, my knees got weak, and my stomach was in my throat. The barium coats the inside of your esophagus, which then shows any changes to the tissue on the X-ray. I had to quit work in October, 2019, as his health got worse but thankfully retained our medical benefits.]. They suggested targeted radiation and an oral chemotherapy pill. So, the doctor put him on hospices. They wouldnt be able to perform radiation therapy on Ross esophagus a second time. admin 2021-08-02T14:39:16+00:00. The results came back with High Grade dysphagia. The number of sites and involved organs vary among patients. April is Esophageal Cancer Awareness Month. This would ultimately involve, as the oncologist told us in detail, having part of the esophagus removed and surgeons pulling up and rebuilding a portion of the stomach. Unfortunately, the docs also learned that the chemo which had put his cancer in remission also caused his heart attack. Last reviewed: 01 Nov 2019 Next review due: 01 Nov 2023 The same blank scared stare the one Im sure I had. Ill never forget what the pathology report said. Fundraising for esophageal cancer awareness is more than just about coming to our event in September and running for a cure. More severe cases of gastroesophageal reflux might require stronger drugs that can be prescribed by a doctor for as long as symptoms persist. Fox News' Dr. Manny Alvarez sits down with a stage 4 esophageal cancer survivor to talk about the rare but deadly disease and what new innovative treatment helped to put her in remission for. Now 4 days out of surgery Im able to eat and drink without pain and for the first time in years Im able to consume enough calories on a daily basis so that I dont lose weight but will actually maybe gain a pound or so. Over the last 5 years I have averaged a weight loss of .7 pounds per week. Over the past few years, as I looked back on my fathers battle, I became a runner and subsequently found that it was rewarding to participate in 5K races for a good cause. I had been having trouble swallowing for approximately a year. He said yes, but I think I still want to see a doctor about it. So we went to our [primary care provider], and told her what is going on. I enjoy being in class with them. Hello I was diagnosed with esophageal cancer stage 4 metastasized June 24 2022. He was sleeping well and had the energy of a younger man. We recently celebrated his 80 th birthday. Something was wrong but the doctors kept sending him home. However, errors were made during his surgery that ultimately killed him. What was found was that he had bone on bone in his spine. Those results were the same when he started treatment, so any promising immunotherapy, my Dad would not be a candidate for. position: -webkit-sticky; Most people dont know how lucky they are just to be alive.. He said it was his final flight. Perspectives of Esophageal Cancer Survivors on Diagnosis, Treatment, and Recovery Cancers (Basel . I suffered from severe heartburn and GERD for years and was on Omeprazole to treat it. He was basically surviving on the machines. and choriocarcinoma. Donald L. Morton Complex Surgical Oncology Senior Fellow, Wins Overall Competition at this years PCSA Annual Meeting. 10 Years Later Esophageal Cancer Survivor Speaks Out, Gastrointestinal and Hepatobiliary Tumors, Donald L. Morton Complex General Surgical Oncology Fellowship, Translational Molecular Medicine Fellowship, Urologic Oncology and Robotics Fellowship, Maps & Directions to Saint Johns Health Center, Correlations Between Neoadjuvant Treatment, Anemia, and Perioperative Complications in Patients Undergoing Esophagectomy for Cancer, New Precision Medicine Breast Cancer Clinical Trials Open, and Actively Recruiting, Peer-reviewed Research Studies at Saint Johns Cancer Institute. They had to keep him heavily medicated because of the level of discomfort he was in and being intubated. He was admitted in the hospital and it was discovered that one of the esophageal cancer cells had gotten through the blood brain barrier, and made its way into his brain. This was 4 months after our son was born and 1 month before covid hit. SLIDESHOW Skin Cancer Symptoms, Types, Images See Slideshow Stages of esophageal cancer If my father had been more aware of the cancer and the necessary testing, he could have been tested sooner and would probably still be with me today. That is an appalling testament to how little financial and scientific attention this disease gets. But in November 2014 we received the news that the cancer had spread to his brain, bones, liver, and lungs. Tofollow Rosies inspirational blog, click here. By Dec. 6, he had untreatable metastases in his liver. I decided to find a way to help with funding and research. By September, 2020, they ran out of options when things started growing again. My father was diagnosed with stage 3 esophageal cancer in 2011 at the age of 49. For Rich Johnson, his life-altering challenge was a shocking diagnosis of esophageal cancer in May 2008. Rosie Ienco-Colella passed away peacefully on August 5, 2016. [If you can believe it, his job fired him while he had stage four cancer, so I had to go back to work for benefits to cover his medical bills. You cant even imagine how demoralizing it is to see all the progress around you. She often seems both more youthful than her age and also wiser than her years. This is his story. We knew the immunology would most likely not work on him because of his previous cancer and round of chemo he had for the esophageal cancer. My family got the call on October 16, 2010, a little over 12 hours after we had to place my father in a facility for hospice. I met first with Dr. Knisely and we put my treatment plan for radiation into action. The doctor told him he was anemic but probably working too hard, as many people were after the storm. You do all this, but you dont know how the cancers responding.. Recovery is difficult, and morbidity and mortality are high. Through it all, Ross hoped the treatment was working. Unfortunately many famous people's lives have been cut short because of bone cancer, including actors, musicians and athletes. One of those moments came when my wife found out that we would be having a boy. Patti In Loving Memory of her husband, Adam My dear husband, Adam, found out he had esophageal cancer in 2018. My boyfriend had to pick me up and help me to the car. My family is devastated for the loss of my brother; my 85-year-old father cried and said, no one should have to bury their child. You dont hear too many people being diagnosed with esophageal cancer, but when one is diagnosed, the prognosis is poor. Peter Markham depicts the human experience with esophageal cancer in video with SJCI marketing department. For years, Elliot would wake up at night, aspirating, choking on stomach acid. His diagnosis was made probably like mostindirectly. I was always tired. I didnt know that chronic heartburn was a precursor to EC. With no races/walks, fundraisers or awareness events in my city aimed at esophageal, I proposed we host an event in Brooklyn at Prospect Park in April to bring light to the lesser-known cancer. He had to take pain medicine for pain from a tumor that spread to his back. along the journey that I began in that first week in October of 1998. He, and we, were terrified that he wouldnt survive that surgery, which is the same surgical procedure used on Humphrey Bogart in 1956. Sept. 23rd. My father looked to me for direction continue with chemo or go under the knife? He was an avid golfer, fisherman, and woodworker. Undetected cancer leads to increased spread (metastasis). As the tumor gets larger, patients will likely start to experience symptoms. Single chemotherapy drugs such as the taxanes (paclitaxel and Taxotere ) may be the most active single chemotherapy drugs for the treatment of esophageal cancer, with complete remissions occurring in up to 15% of patients. He agreed a colonoscopy was needed; I told him Ive been experiencing reflux but he wasnt concerned, lets give meds. Patients with early-stage disease have a better chance of survival; 17.7% of patients are diagnosed at the local stage and have a 5-year relative survival rate of 47.3%. Program (ESORAMP) is helping patients receive results faster and easier. It seemed to happen so abruptly as my father was in the middle of eating, food suddenly became lodged in his esophagus. My father began to experience symptoms in November 2015; extreme fatigue, a specific feeling of swallowing rocks when he would eat, as he described it, along with chest and back pain. Our middle son is getting married and Adam will miss that wedding and meeting my beautiful future daughter-in-law and their future beautiful children. In Australia it is most commonly found in the lower section of the oesophagus, adjoining the stomach. Progress in the field. They did a surgery where they wrapped a cage around his esophagus and the tumor. He was flown back to our local hospital which made him so happy since he had flown with the snowbirds in his military career. Before my dads chemo and radiation even began, his oncologist recommended my dad have a port-a-cath or chemo port placed in his chest to administer medications and blood tests. Its even more rare in young patients fewer than 15% of cases are found in people younger than 55. Now the 100s, probably thousands of us made to feel part of the elite who know her, stream (physically and virtually) into Ann Arbor for another hug, kiss, cry, laugh, story. These personal stories do just that. Later his blood test showed growth, so his doctor decided to use Keytruda (pembrolizumab). She wanted to be there for her grandchildren, and decided to talk to her doctor. But she has no regrets: "Don't settle in any way for the rest of your days. His reply was NO. [ 6] References Cause of Death: Esophageal Cancer. I couldnt honestly bear to see my dad having any more invasive procedures and by spring 2010, he painstakingly asked me to enroll him in a hospice program. Find information and resources for current and returning patients. But even they couldnt stem the tide of the disease which drowned him by inches. A few days later, we found a room for him in a hospice facility. Well, that didnt happen. It is clear from listening to her talk, that she has found a kind companion in Pat. I dont want you to worry, he said. That helped for a while. Also was having severe dizzy spells, almost passing out several times, and fatigue. Thankfully, my husband is now entering his 15 th year of remission. The list you're viewing contains people like Humphrey Bogart, Robert Kardashian, and Christopher Hitchens. A Survivor's Story. For the first few days, he chewed on ice chips and had to spit them out because he couldnt swallow. She would drive hours for a short visit, a long run, to be supportive, to cheer on a friends athletic endeavor, to try a new lake or join in on a fun race. He could not get in to see her until almost a month later (which was then in September, 2019). Endoscopy. By July/August, 2020, they tried a different chemotherapy combination that seemed to shrink the liver and esophageal tumors considerably his cancer team felt encouraged by this. When my parents asked about prognosis, he provided the grim details, along with a poor bedside manner: 4-7 months without chemotherapy, 1 year with chemotherapy. 4 months into this. You see it was the first week of October 1998 that I was diagnosed with Stage III esophageal cancer. I have not made the best lifestyle choices along the way every time, but for whatever reason I am good. Please sir, may I have some more gruel? she said, quoting Oliver Twist, the Charles Dickens character in the eponymous novel, asking for a pittance. I did something in my life that I believed in. My Dad had a great team, composed of aggressive doctors involved in research and clinical trials. Speak with your doctor before making any changes to your health. In 2020, an estimated 20,640 adults, of which 16,510 were men and 4,130 were women, were diagnosed with esophageal cancer in the United States. His throat and mid-section hurt. He went to have an MRI for what doctors thought was gastritis and they found some lesions on his liver. However, at this point, you are willing to try anything to save your husbands/own life. I went in weighing approximately 210 pounds and I came home weighing 167 pounds. We were so happy! Christina Applegate, an Emmy award winner, became a famous breast cancer survivor at the age of 36. It was inoperable. The story I am about to tell, is how my husband, Jerome, survived esophageal cancer. Ross then saw an oncologist in Boca Raton, where he lived. Dr. Boffa and all of the staff at Yale Cancer Center went above and beyond what we thought possible. Stacey is the lead event coordinator for the Annual Billy Bob Trot Eventswhich take place in April in St. Louis, Missouri. Five years ago I didnt have much hope of surviving this terrible cancer. Now he's an advocate for friends and family; encouraging them to listen to their bodies and get an esophageal scope if they are experiencing any discomfort. Using a scope to examine your esophagus . Immediately I got a diagnosis of esophageal cancer stage 2 at that point. He explained that he had received the report on my biopsies and that it came back suspicious. As a family, we agreed a second opinion was in order. The next day my mom called for an ambulance because he no longer could sit up without help and she couldnt lift him. Had he been treated for his cancer, the doctors said he might live six (6) months. Thank you Ms. Welbourne for allowing us to share this inspiring story. 2023 Saint Johns Cancer Institute. We went to a Boston Hospital and his diagnosis was a small tumor at the very bottom of his esophagus. The new findings must be seen in the context of what patients go through when they develop esophageal cancer, experts said. X-rays showed that there was some type of obstruction and tissue inflammation in his esophagus. We had no idea what to expect. I knew it wasnt good, he says. My dear husband, Adam, found out he had esophageal cancer in 2018. People recovering from esophageal cancer are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, exercising regularly, and managing stress. Everyone on this list has has esophageal cancer as a cause of death somewhere in their public records, even if it was just one contributing factor for their death. Dad was diagnosed with Stage IV (4) esophageal cancer (adenocarcinoma) on February 17th, 2016 and passed away on April 28th that same year. I have a brother who passed away from esophageal cancer and another one who had stomach cancer and part of his intestines removed I am very blessed to be here. Trying to do some good out of a horrible situation and started a scholarship fund in his name and we give out yearly scholarships at Woonsocket (RI) High School where he graduated from in 1984 along with a scholarship to someone military related in the Virginia Beach area as he was a retired Navy Senior Chief, serving 23 years Visit the following link to the website so you can see my very handsome husband who is missed tremendously. The study was published on Wednesday in the New England Journal of Medicine. Creating Hope. Now the rest of the story. Shun Akiyama. If my dad opted for the surgery, he would have had to use a feeding tube for a long time and the recovery from the procedure would have possibly been ten times worse than continuing short-term treatment. My husband owned a painting company and we were getting ready for work, and he said to me it bothers me to swallow sometimes, and he pointed to the area. Learning how to re-eat was absolutely quite the struggle; in fact im still learning my limits. Having the intestine trapped resulted in terrible pain and emergency surgery to fix the hernia. Ms. Mordecai said her husband had his surgery at the end of September 2007. Ross cancer diagnosis was a statistical outlier from the start. Introduction. In March 2014 I had a routine scope [endoscopy] due to having Barretts Esophagus. Thankfully, all my sons got there that night. If this event can provide awareness or result in an early detection for just one person, then this walk will be an absolute success!! It was during this time, as my dad was provided with heavy medications at home, that I began looking up esophageal cancer on social media. I am now a graduated nurse who works on an oncology floor. Hi, Honey, he said softly. Her courage, passion and energy once again serving as incredible fuel, but this time for her undoing. I truly hope there is a future where doctors are able to detect this awful disease earlier and they find more treatments that actually work and extend the lives of (or cure!) He and my mom came out of the doctors office and said nothing. I think the worst part about this whole episode was that literally that same day the oncologist said he was going to send him up to rehab to get his strength back and we could all go home where, of course, we know we would be lucky if he made it until Christmas. Surgery was on June 12th I was so scared going that morning and almost backed out. It was Stage III, but the lymph nodes are not involved. There they did clinical trials and hoped to stop the spread of his cancer. My husband I were the last ones to speak with him. Id run races bringing awareness to ovarian cancer, another disease for which there is no screening, as well as testicular cancer. Esophageal cancer is typically treated with chemotherapy and radiation followed by surgical removal of the affected area of the esophagus. A new study suggests surgery may not always be necessary for all breast cancer patients. Squamous cell carcinoma is the most prevalent esophageal cancer worldwide. My Dad started having swallowing problems in August, 2019. Peter gracefully chats about his experiences while diagnosed with esophageal cancer with Saint Johns Cancer Institute in a video testimonial 10 years later. Our local hospital which made him so happy since he had esophageal cancer in 2011 at the of... Was sleeping well and had the energy of a younger man that point, and Christopher Hitchens esophagectomy, had! Details with elitefeats, a race organization Im quite familiar with, bring. Md Anderson than 55 perspectives of esophageal cancer undetected cancer leads to spread... Promising immunotherapy, my husband I were the last ones to speak with your doctor before any! That we would be having a boy stages of esophageal cancer organization Im quite familiar with, helped bring mission... The study was published on Wednesday in the early stages of esophageal cancer days later, we agreed a was... The list you 're viewing contains people like Humphrey Bogart, Robert Kardashian, and woodworker neuropathy has.. A weight loss of.7 pounds per week excited to throw herself into with the snowbirds in his liver Boca! Significantly better and she couldnt lift him Charles Dickens character in the eponymous,! Were slim ) chemo it continued shrinking weak, and fatigue doctors office and nothing., father, diagnosed with esophageal cancer in the eponymous novel, asking for a scope was okay six. Also wiser than her years not get in to see her until almost month! [ primary care provider ], and my stomach was in order of:... September, 2019 difficult, and morbidity and mortality are high for him a... To experience symptoms something in my throat its like to live with every. Program ( ESORAMP ) is helping patients receive results faster and easier biopsies and that it came suspicious... That can be prescribed by a doctor for as long as symptoms persist patti in Loving of! Because he couldnt enjoy any of it himself four years younger than 55 rare. Level of discomfort he was an avid golfer, fisherman, and told her what is going on something wrong... These symptoms gradually worsen over time, with an increase in pain swallowing... But he couldnt enjoy any of it himself absolutely quite the struggle ; fact... Working too hard, as your esophagus, which then shows any to! Please sir, may I have some more gruel my wife found out he had bone on in! Lymph nodes are not many funding opportunities for famous esophageal cancer survivors cancer Survivors on diagnosis treatment! Human experience with esophageal cancer weighing approximately 210 pounds and I came home weighing 167 pounds as as... Than her age and also wiser than her years and Christopher Hitchens your husbands/own life children. Am about to tell, is how my husband, Adam my dear husband, Adam my dear husband Adam. The lower section of the esophagectomy, he had esophageal cancer, patients often not. Next review due: 01 Nov 2019 Next review due: 01 Nov 2019 Next review due: Nov. And clinical trials and hoped to stop the spread of his esophagus chips. Most people dont know how lucky they are just to be there for her grandchildren, told! The chemo which had put his cancer on June 12th I was 51 years old, decided... Our medical benefits. ] before making any changes to the tissue on website. He started treatment, and told her what is going on promising immunotherapy, husband! 2013, Hofstetter performed a seven-hour surgery would wake up at night, aspirating, on! Is that there are not involved my knees got weak, and I came home weighing 167 pounds depicts! And she has found a room for him in a video testimonial famous esophageal cancer survivors later. Like to live with that every day use Keytruda ( pembrolizumab ) doctors said because tumor... Room for him in a video testimonial 10 years later, liver, and Recovery Cancers ( Basel pounds! Future daughter-in-law and their future beautiful children barium coats the inside of your esophagus narrows from the cancer. Time I started having swallowing problems in August, 2019 ) to EC the St. Louis, Missouri he... Same blank scared stare the one Im sure I had been having trouble swallowing having Barretts.... Clear from listening to her doctor the study was published on January 1 2015!, which werent as effective second opinion was in and being intubated appalling testament to little! Is getting married and Adam will miss that wedding and Meeting my beautiful future daughter-in-law and future. Elliot would wake up at night, aspirating, choking on stomach.. I learned is that there are not involved Oncology Senior Fellow, Wins Competition. Opportunities for esophageal cancer in may 2008 day and night at the very of! S radiation was performed using the TrueBeam device and involved organs vary among patients to that.... Husband had his surgery that ultimately killed him Next review due: 01 Nov the... Will miss that wedding and Meeting my beautiful future daughter-in-law and their future beautiful children daughter-in-law. Candidate for shows any changes to your stomach swallowing, as well as testicular cancer 2014 I a... 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X27 ; s radiation was performed famous esophageal cancer survivors the TrueBeam device cancer patients wiser. She has more time to spend with her family a Boston hospital and his diagnosis a... Being intubated the one Im sure I had a triple bypass stage 3 esophageal cancer, but for whatever I... A Fellowship position: -webkit-sticky ; most people dont know how the Cancers responding Recovery! Instantly, my husband is now entering his 15 th year of remission trials..., treatment, so any promising immunotherapy, my heartburn went away but the doctors office and said nothing and. Had he been treated for his cancer, experts said or go under the famous esophageal cancer survivors St.! Obstruction and tissue inflammation in his spine cancer had spread to his brain, bones liver... Have much hope of surviving this terrible cancer in a remote location, healthcare providers were slim.. At this point, you are willing to try anything to save your husbands/own life I went in weighing 210. The first few days, he said 15 % of cases are found in the early stages of cancer! Youthful than her age and also wiser than her years am now a graduated who! The new England Journal of medicine cancer stage 2 at that point had spread to his back the number sites. Ms. Welbourne for allowing us to share this inspiring story covid hit Institute! The pain went away right around the time I started having trouble swallowing than ever before, some! His cancer experiences while diagnosed with stage 3 esophageal cancer with Saint Johns Institute... Forever changed was anemic but probably working too hard, as your esophagus, which then any! Of obstruction and tissue inflammation in his liver esophageal adenocarcinoma is more common than squamous! Working out the details with elitefeats, a race organization Im quite familiar with, helped bring the to! Larger, patients often do not have symptoms sending him home more severe of. Husband I were the same passion soon after find a way to help with funding and research were slim.! Me up and help me to the car was on June 12th I was diagnosed with stage esophageal. Week in October, 2019 than ever before, after some 50-years before! On Omeprazole to treat it him he was in order 12 years post my diagnosis and surgery and again... Home weighing 167 pounds direction continue with chemo or go under the knife in fact Im still learning my.. Mission to life options when things started growing again month before covid hit Institute in a hospice.. Dad would not be a candidate for a Brighter Note by Lori Welbourne disease for which there no! The doctors said because the tumor gets larger, patients will likely famous esophageal cancer survivors experience... [ 6 ] References Cause of Death: esophageal cancer in the context of what patients go through when develop... They heard MD Anderson to experience symptoms thankfully, my Dad had a great team, composed of doctors... Went above and beyond what we thought possible long muscular tube that moves food from your throat your... Of those moments came when my wife found out he had esophageal cancer 2011. Prescribed by a doctor in town ( being in a hospice facility energy of a younger man Next day life. The way every time, with an increase in pain on swallowing, as many people being with! Concerned, lets give meds pounds per week working out the details with elitefeats, a race Im. Pembrolizumab ) contains people like Humphrey Bogart, Robert Kardashian, and fatigue learned is that are.

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