Patient Stories

p-stories

In 2016, Mike had run a marathon with a personal best, beating his record from 15 years earlier. He was in his physical prime and lived an active outdoor lifestyle but had ignored signs of not feeling right. He was more fatigued than normal and had seen blood in his stool that his doctor thought was due to irritable bowel syndrome. In February of 2017 Mike still wasn’t feeling like his normal energetic self; he was fatigued, and his body felt like it was slowing down. He asked his doctor if he should get a colonoscopy, a routine procedure that took three months to schedule. When he finally woke up from the routine procedure, the gastrointestinal doctor diagnosed him with a rectal tumor and referred him to an oncologist. His oncologist diagnosed stage 4 colorectal cancer with liver metastases and told him his liver was inoperable. “As an entrepreneur and son of a retired gastroenterologist, I was used to investigating new technologies and learning how medical treatments worked.” When his doctors told him the National Institute of Health guidelines for treating liver metastases from colorectal cancer were built around 70-year-old males, Mike felt confident he could do better than the 5-year survival rate of about one in 10 patients the doctors quoted. He called on six different oncologists at six different hospitals. None of them offered options that provided the long-term survival potential he sought. Finally, another doctor told him about Hepatic Artery Infusion (HAI) therapy and the Intera 3000 HAI Pump. After reading the long-term survival data in published papers, Mike decided this was the best option for him. Mike had the pump implanted in June of 2017 and within five months of Hepatic Artery Infusion therapy, the doctors told him his liver was ready for resection. He had surgery in November of 2017. When the tumors in his liver returned, his doctors were able to reactivate the HAI pump therapy to help shrink the tumors enough for a second surgery in October 2020. “After a 13-hour liver resection surgery, I woke up and was told I was cancer-free.” Since being given this news, Mike has cherished returning to his active family life.

Q. What is it like to live with the pump?At first it felt like my pump moved around. But over time I got used to how it feels in my body. The pump’s chemo delivery is great because I didn’t have the same physical side effects as I did with systemic chemo, like hair loss and nausea. In terms of physical activity, it doesn’t stop me from walking and swimming. I continue to ski, but my days of going off cliffs are behind me. It doesn’t get in the way of daily living. Last summer I went camping to watch the lunar eclipse and painted my house. I don’t even think about the pump being there anymore. Q. Can you tell us about the refill process?My local clinic had never done it before, so the nurses were nervous in the beginning. Now I’m in and out in about five minutes. The refill is pretty painless, and I can’t tell the difference between refills of saline versus chemo. Q. If you were talking to a patient right now, what would you say?A cancer diagnosis is traumatic. The numbers are bad, and when you start filtering by age, education, and resources, the picture might get better or worse. There are things you can do, such as change your diet and identify and take actionable steps. It can be overwhelming, so start making headway on things you can do. Having hope is 90% of it.

Mike's story

In 2008, at age 32, Stacy had just given birth to her first child after a normal and uncomplicated pregnancy. Two weeks later, she had a fever. Both her Ob/Gyn and internist found her glands were a little swollen and sent her home with an antibiotic. When the fever persisted, Stacy sought the opinion of another doctor who conducted a battery of tests, that led to a sonogram revealing lesions on her liver. Stacy received a stage 4 colon cancer with liver metastases diagnosis on a Friday and by the following Monday she’d booked consultations with surgeons and oncologists to understand her options. The first recommendation was to remove the colon tumor, follow with systemic chemotherapy and then re-evaluate the possibility of surgery to remove tumors in the liver. The second was to start with traditional chemotherapy to reduce the size of the colon tumor and then have surgery to remove the colon tumor and at the same time implant a pump for Hepatic Artery Infusion (HAI) to provide delivery of chemotherapy directly to the liver. “The whole idea of the pump was scary to me; it was a foreign object in my body,” Stacy recalls. “I wondered whether I would be able to fit into my jeans if I had a pump.” Ultimately, she felt it had the best potential for making liver surgery possible, and with encouragement from her doctors she was ready to move forward. She started systemic chemotherapy to shrink the tumor in her colon and had colon resection in July 2008. She had the pump implanted during that surgery and then started Hepatic Artery Infusion (HAI) therapy. “Having the pump allowed me to receive chemotherapy and resume life with my new baby.” After four rounds of HAI therapy, the tumors on her liver shrank and she was ready for two-part liver resection surgery in January and March of 2009. Stacy is happy to report that she has been cancer free for nearly 14 years.

Q. What is it like to live with the pump?I was very fortunate. For the most part I went about my day, participating in many of my typical activities like taking my child to his music and gym classes. I was able to do yoga and take long walks and eventually went skiing. For the first year, the pump felt foreign in my body, but I got used to it. Q. How is the refill process?The pump refills are quick and done in a matter of minutes, whereas the systemic chemotherapy refills can take hours.

Stacy's story

After successful cardiac surgery in March 2015, Rick developed pain in the area around his liver. An MRI revealed a mass, and Rick was diagnosed with bile duct cancer confined to his liver (intrahepatic cholangiocarcinoma). His doctors recommended he start on aggressive systemic chemotherapy right away. For the next nine months he underwent six-hour chemotherapy sessions every two weeks to shrink the tumor with the goal of enabling liver resection. In December, his doctors told him that while the chemotherapy had stopped the tumor from spreading, there had been no reduction in its size. Rick needed to consider other options. Rick was told surgery and long-term recovery were no longer options. Due to the inoperable nature of the tumors in his liver and the lack of success with a regimen of systemic chemotherapy, he considered radiation therapy. Uncertain that radiation therapy was the right treatment for him, Rick sought other opinions and alternatives. At a third consultation, Rick learned about a treatment called Hepatic Artery Infusion (HAI) therapy that could deliver concentrated chemotherapy to the tumors in his liver via a pump without toxicity to other areas of his body. He was initially concerned about having a pump implanted, but after talking with doctors who perform HAI therapy and implant the pump, he decided to move forward. Rick had surgery to implant the pump in February of 2016 and received HAI therapy until the end of that year. Rick says, “After a year, my hair growth returned along with my energy and my overall outlook on life. I felt normal again for the first time in a couple of years, both physically and mentally.” In late December, Rick’s doctors told him he was ready for resection. Rick has been able to get back to leading his normal pre-cancer life, spending time at his beach house, playing golf, traveling, and being with his granddaughters. He is happy to share his story with anyone.

Q. What is it like to live with the pump?Today, I walk three to five miles and play golf, travel, and play with my granddaughters. I have normal energy for someone my age. I wear looser shirts now, but it’s a fashion tradeoff I’m happy to make. Q. What’s the refill process like?It’s painless compared to regular chemotherapy. It’s a little poke as the needle goes through the rubber access port, and I don’t even feel it coming out. The whole process takes less than 15 minutes. If they’re putting glycerin in the pump to extend the time between refills it can take a few more minutes. Then, a little band-aid and you’re done. Q. How quickly could you resume normal activities after getting the pump?Once the stitches were removed, I was back to walking again. I continued to exercise and immediately felt better. And with no six-hour [chemotherapy] sessions with bleeding and hot sweats, I really started feeling better. Before the pump, receiving systemic chemotherapy, I felt terrible. After the pump, it’s a different world – I started feeling normal again. Q. What you tell someone with a similar diagnosis about your experience?Once you’ve been diagnosed with cancer, I would strongly encourage them to seek multiple opinions, if possible. I was fortunate enough to have the resources and family support to travel and determine the best course of treatment. Most of the medical institutions at that time did not understand or know how to treat my cancer. It's come a long way. I also urge you to find support groups who can provide knowledge and assistance as patients and families go through the various stages of cancer treatment. I have found the Cholangiocarcinoma Foundation and plan to be involved and assist wherever I can.

Rick's story

When visitors to Don’s home ask about the large, fully decorated Christmas tree behind his desk – which is up 12 months of the year – it’s an opportunity for Don to talk about his pump. According to Don, his wife loves everything about Christmas, looks forward to putting up the decorations every year, and is sad to see them go back into boxes. After his cancer diagnosis in 2016, they decided to keep Christmas around permanently in the form of a decorated tree in their living room. It’s their symbol of hope and everyday joy. In May of 2016 after a routine colonoscopy, Don’s GI doctor gave him the difficult news: he had stage 2 colorectal cancer. Although the doctor removed the polyps he found, Don would need follow-up surgery to have half his colon removed. Post-surgery evaluation brought the welcome news that nothing penetrated the colon wall, and all his lymph nodes were negative. Chemotherapy was not discussed or suggested, but something nagged Don. He’d seen some small spots on one of his scans, and though his oncologist, radiologist, and surgeons all said they were benign, he’d read that the chances for recurrence for his type of cancer were high. He pushed for a follow-up scan earlier than was recommended. Don’s fears were justified. The scan revealed that all the spots on his liver had grown, and he was diagnosed with stage 4 colorectal cancer with liver metastases and told he had a 40% chance of surviving 12 months. Don’s response to the devastating news was to dive into researching how he might improve his odds. He investigated treatment options, survival odds, recurrence rates, the best hospitals, and clinical trials – anything that would give him a chance. The treatment that kept coming up was Hepatic Artery Infusion (HAI) therapy. The data point that stuck with him most was that with HAI therapy, patients were seeing a 50% chance of five-year survival. Don gathered up his scans and records and went to meet doctors who perform pump implants. After assessing Don’s disease, they agreed that an HAI pump was an appropriate therapy for him. The following week, he had simultaneous liver resection and pump implantation. After Don recovered from the surgery, his oncologist used the pump for follow-up therapy for several months. He’s had no evidence of disease since 2017. Today, in addition to selling real estate, Don spends time organizing an online support group for people with stage 4 colorectal cancer with liver metastases where he shares information about clinical findings and his personal experience with the pump. Don enjoys feeding birds and riding his bike, and the Christmas decorations remain in his living room now as a symbol of both hope and success.

Q. What is it like to live with the pump?The limitations on activities such as skydiving and deep-sea scuba diving don’t impact my life. My daily life has no limitations. While the pump doesn’t show visibly on me, I do find it’s sometimes more comfortable to sleep on the side opposite from where the pump is placed. Q. What about the refill process?The refill portion of my oncology center visit is very quick. Many of the patients receiving chemo there have HAI pumps so the nurses perform refills a dozen times a day. It takes from five to 10 minutes to access, empty, and refill the pump. By contrast, systemic chemotherapy takes much longer. Q. What would you tell someone with a similar diagnosis about your experience?As a moderator of our support group for cancer patients and their families, I encourage them to join online patient groups, read, and ask questions about living with the pump. The pump community is very supportive and ready to share. I sometimes spend five or six hours with new patients one-on-one. It’s a very personal decision, so I try to give them as much information as possible.

Don's story

“It all started with stomach pains that grew worse over time, until one day, it felt like somebody was stabbing me in the stomach with knives,” Marsha recalls. In August 2016, she went to see a gastroenterologist who thought the cause might be bacterial colitis; then a colonoscopy revealed an obstruction. After a biopsy, her doctor diagnosed her with colon cancer. She was 41 years young with two children, ages five and seven. “I had no family history of any type of cancer. I exercised, ate well, and was BRCA negative. Cancer wasn’t supposed to happen to me, but it did.” With her cancer at stage 3, she underwent colon resection and a grueling 12 rounds of chemotherapy. At the end of the treatment, she was given a clean bill of health and thought she could finally put the nightmare behind her. Unfortunately, routine blood work and a PET scan shortly thereafter confirmed there was a large tumor on her liver and her cancer diagnosis was changed to stage 4. Marsha was referred to a liver surgeon, who recommended surgery immediately. “I’d heard of Hepatic Artery Infusion (HAI) therapy through a friend who’d received it nine years earlier and had had no evidence of disease for over eight years.” She asked the liver surgeon about it and was told HAI therapy was “overtreatment” in her case, because her tumor was already operable. Nevertheless, she decided to seek a second opinion, mostly to confirm that liver resection was the best course of treatment. The second surgeon strongly recommended liver resection and Hepatic Artery Infusion therapy together. Now she was frustrated, confused, uncertain what to do and who to listen to. Finally, she demanded that the surgeon who recommended HAI therapy explain why he was right and his way better. “That’s easy,” he said. “HAI therapy significantly increases chances of survival.” That was all Marsha needed to know. Her surgeon went on to explain the treatment and its history in detail and directed her to some of the published research on the treatment. She read the research and was sold. “I wanted to do everything in my power to stay alive for my kids and put this disease behind me, and I knew unequivocally that that hockey puck gave me my best chance.” Marsha had the pump implanted in May 2017 along with a liver resection. Today, she is no longer in treatment and enjoys life with her family. “I am eternally grateful to the doctors and the research that gave me access to this amazing therapy that has given me the best possible chance of survival.”

Q. What is it like to live with the pump?I’m a smaller person so I notice it more, but certainly don’t regret having it. I’ve been able to do most of the activities post-pump that I did before cancer, including the elliptical and wrestling with my kids. Q. What is the refill process like?The nurses prepare the pump site and refill it. The process is simple and less painful than a flu shot and takes less than 15 minutes.

Marsha's story

Looking back on the time before his diagnosis, Josh says, “I was running a business, raising two young kids, eating hamburgers and spicy fries, not sleeping well, and really out of shape. I’d pretty much given up on my health.” In July of 2016, Josh was out on a Saturday night and got an intense pain in his stomach. He went home and called his sister, a pediatrician, who said it could be gallstones. “She said if I could get through the night, I was okay; if not, I should go to the emergency room.” Josh got through the night but went to the emergency room the next day. They sent him home. At his wife’s urging he followed up with his doctor to get an ultrasound just to be sure it was really nothing to worry about. His doctor called him after the ultrasound and told him there were some big spots on his liver. Josh’s reaction: “I’m only 40 years old so there’s no way it’s cancer.” Blood tests revealed potential cancer indicators. Now Josh was scared. A follow up colonoscopy revealed “more polyps than could be counted.” The gastroenterologist told him to go to an oncologist immediately. Based on his level of disease, doctors told Josh he had a 2% chance of survival. “That was all I could think about. I had to focus on that 2% chance.” One of Josh’s goals was to see his kids through important milestones such as his daughter’s bat mitzvah. He started systemic chemotherapy and within three months his tumors shrank by 50%. In January of 2017, he had simultaneous liver and colon resection. When the tumors in his liver returned in May of 2017, his doctor recommended Hepatic Artery Infusion (HAI) therapy with an implanted pump to deliver chemotherapy directly to the tumors in his liver and potentially help with recurrence. Josh had the pump implanted in May 2017 and was cancer free in six months. But six months after that, the cancer returned. Josh’s pump was still implanted, so his doctor started another round of targeted chemotherapy. Once the tumors shrank, Josh was able to have a second liver resection, after which the doctor increased the dose in the HAI pump. This time the cancer did not come back. Josh has been able to celebrate many of his children’s milestones since receiving treatment, including his daughter’s bat mitzvah.

Q. What is it like to live with the pump?I play tennis and play with the kids. I never missed a day of work. Q. What would you say to someone considering HAI therapy via pump?If you are a candidate who is considering HAI therapy, embrace it.