Renelle Jacobson is in her fifth year of chemotherapy. She has undergone about 10 surgeries, including a leg amputation. She copes on a daily basis with the symptoms of cancer and the side effects of treatment—pain, nausea, and low blood counts, just to name a few. And yet it seems there is no stopping her.
After a long career as an information technology specialist for the National Park Service—working in such scenic locations as Glacier National Park, Rocky Mountain National Park, and Grand Teton National Park—the 42-year-old has just submitted her medical retirement paperwork. But Renelle’s is not your average retirement plan: “I’m searching for a treasure,” she explains.
Some might assume that the treasure she is seeking is good health—and indeed Renelle spends a great deal of time focusing on her health and treatment as well as on relationships with family and friends. But her retirement will also allow her time to pursue her search for literal hidden treasure—in the form of a lockbox full of gold nuggets, rare coins, jewelry, and gemstones hidden in the Rocky Mountains by a retired art dealer named Forrest Fenn.
“You have to figure out what keeps you going,” she explains. “It is important to have as much of a life as you can. If you can’t have it outside your house, then figure out how to have it inside your house.” Renelle’s hunt for Fenn’s treasure has been one way she has continued to live a full life—sifting through clues and trying to deduce where to look next for the bounty. The thrill of the hunt keeps her going, especially on hard days.
Living with Metastatic Cancer
Renelle is one of a growing number of people who are living longer-term with metastatic cancer—cancer that has spread from the original site to one or more distant sites in the body. Metastatic cancer is generally considered incurable; but, as cancer treatment continues to evolve, more and more patients are living longer with metastatic disease.
Renelle was diagnosed with osteosarcoma in October 2009, when a scan revealed a 6-inch tumor in her knee and femur. Despite removal of the tumor and a grueling chemotherapy regimen, the cancer spread to her lungs. She has undergone three lung surgeries and several other cancer-related surgeries as well as an endless series of chemotherapy regimens. Her leg was amputated in December 2011, but the cancer is aggressive and new tumors continue to develop.
Renelle’s treatment is aimed at controlling the cancer. “About a year and a half ago, my oncologist told me that she no longer believed I could be cured,” Renelle says. “Around that time we tried my eighth and ninth different types of chemo and found that they actually work. They don’t kill the tumors, but they knock them back significantly. So the plan is to pump as much of that chemo into me for as long as I can take it.”
At this point Renelle does not get a lot of breaks in treatment. Constant chemotherapy treatment is challenging, but the cancer returns quickly if treatment is paused for any period of time.
“It makes me think my long term is going to be shorter than I thought,” Renelle admits. “I’m not giving up by any means. I’m just being realistic.”
Understanding Metastatic Cancer
Cancer treatment has come a long way in the past few decades, and as a result the prognosis for metastatic cancer has changed. In fact, some but not all types of metastatic cancer are being treated more like a chronic disease—and some people are living a long time with cancer.
“For most cancers, once they are metastatic they’re not curable, but they are treatable,” explains Julie Gralow, MD, director of breast medical oncology at the Seattle Cancer Care Alliance. Dr. Gralow explains that about 25 percent of patients with metastatic breast cancer live more than 5 years, and some patients live 10 to 20 years. But every cancer is different, and Dr. Gralow is quick to point out that some patients do die quickly: “We have this new idea that cancer is a chronic disease, but we have to temper it. We’re not doing so well for everybody.”
David Hyman, MD, an oncologist at Memorial Sloan-Kettering Cancer Center in New York, echoes this sentiment: “People now come to us with the expectation that this is a chronic disease like diabetes or hypertension, but I think it’s important not to oversell what we can accomplish.” Quality and quantity of life has improved significantly, but still most patients are dying of the disease.”
Dr. Hyman says that average survival is highly dependent on the disease. “When patients ask me about their prognosis, I tell them that we need to see how things go because no patient is an average,” he says.
Advances in Treatment
With or without the “chronic cancer” label, there is no doubt that treatment of metastatic cancer has improved considerably. The advent of innovative treatment strategies, such as targeted therapies and immunotherapies, has changed the treatment landscape.
“We’re no longer thinking that one size fits all,” Dr. Gralow explains. “We look at what makes a cancer unique and what makes a patient unique and then we personalize treatment—to both the patient and the tumor.”
Targeted therapies are designed to target specific abnormalities in a tumor and minimize damage to normal, healthy cells. These treatments are often less toxic than systemic treatment like chemotherapy, which cannot differentiate between cancerous and healthy cells. As a result, targeted therapies sometimes offer improved outcomes and reduced side effects.
“This is an evolving story in oncology,” explains Dr. Hyman. “There have been several significant successes. For example, certain targeted therapies can be added sequentially in the treatment of breast cancer, and this has really changed the course of disease.”
In general, though, Dr. Hyman explains that targeted therapies have improved quality of life but have not necessarily improved the cure rate in the metastatic population.
Immunotherapy is treatment designed to stimulate the body’s immune system to fight the cancer. In essence, this type of treatment helps the immune system recognize the tumor as foreign and kill it. There have been great strides in the development of immunotherapy agents, particularly for melanoma. Clinical trials are ongoing in a continued effort to develop safe and effective immunotherapy agents. This is really a developing chapter of oncology treatment.
Advances in a field known as interventional radiology, a subspecialty of radiology in which minimally invasive techniques are used to deliver radiation to organs throughout the body while sparing healthy tissue, have also contributed to improved treatment in the metastatic population. “Interventional radiologists are able to solve a number of problems. They can place drains, tubes, and stents and do things that were not possible before,” Dr. Hyman explains. “Palliative radiation has become more sophisticated and more targeted, sparing healthy tissue, which has allowed us to use it more frequently and repetitively. These types of procedures have converted things that in the past might have been life-threatening complications to potentially more manageable complications.”
Indeed clinical advances in treatment have resulted in longer survival times and improved quality of life for many patients. But that is only part of the story.
Advances in Supportive Care
The other part of the story—and one that maybe does not get as much attention—is that supportive care has improved. Supportive care is a general term that refers to treatments that help prevent and control the side effects of cancer treatment.
Two Year TKI Consolidation Allowed for TKI Cessation in Select Patients With CML
Research suggests some patients with CML can safely discontinue TKI therapy - NCCN guidelines published.
These side effects can range from mild to severe, depending on the type and the dose of treatment as well as individual patient characteristics. Depending on the specific treatment, patients may experience fatigue, low blood counts, hair loss, nausea, vomiting, diarrhea, skin rash, and other side effects.
Historically, chemotherapy was associated with debilitating nausea and vomiting, but antinausea medications have improved dramatically—and many patients are better able to tolerate treatment as a result. When patients can better tolerate treatment, they can continue to receive their planned dose and schedule of treatment, which improves the odds of controlling the disease. This is an important development for a population of patients that is receiving treatment for longer periods of time.
Physical Challenges of Treatment
Yet despite advances in treatment and supportive care, cancer treatment is not without physical challenges—and because many patients are living longer with the disease, these physical challenges can be frustrating and, at times, downright debilitating.
Dr. Gralow explains that patients face two different kinds of physical challenges: symptoms of the cancer and side effects of the treatment.
“Cancer can cause problems itself, such as pain, shortness of breath, or fluid in the abdomen,” she explains. “But a lot of the physical challenges patients face depend on the therapy they’re receiving.”
Chemotherapy carries a variety of side effects, but the one that seems to have the largest impact on patients’ lives is fatigue. Renelle says that she often doesn’t have the energy to do a thing—and the chemo also has a domino effect. “It’s not just the chemo, it’s all the in-between stuff and the blood work,” she explains. “Chemo is hard on the skin, the hair, the teeth, and especially the blood. It knocks my blood counts down to the point where I often need transfusions. I go in every third day or so to get blood work, so I can’t be that far away. There are a limited number of places I can go because I might need to get my blood checked.” For someone who loves to travel, that is a frustrating byproduct of treatment.
“It’s really hard to stay on chemo indefinitely,” Dr. Gralow explains. Patients who receive long-term chemotherapy can develop neuropathy (nerve damage). Sometimes patients need to switch regimens, not because the drugs are not effective but because of side effects. Some patients are able to take breaks from treatment—but in Renelle’s case, the cancer is aggressive and fast growing, so it is becoming more challenging for her to take breaks from chemo.
The side effects associated with targeted therapies are milder than those that come with chemo and often include stomach upset, diarrhea, skin rash, and fatigue. The milder side effects, however, can be offset by their frequency. “Chemotherapy is given in intervals. That creates a pattern where patients have side effects for a couple of days after treatment and then go back to feeling normal until the next round,” Dr. Hyman says. “Many of the targeted therapies are given every day. Even mild side effects, when experienced on a daily basis, become a huge quality-of-life issue.”
Emotional Challenges of Treatment
Equally important are the emotional challenges of living with metastatic disease. “It’s really tough to get your head around having incurable cancer,” Dr. Gralow says. “That is scary. Depression and anxiety are common. Even when you’re doing well, you’re always afraid of what the next scan or the next blood test will show.”
Metastatic cancer can have a huge emotional toll—not only on the patient but also on the family. Different patients handle it differently, but most report that attitude is everything.
“I just take it day by day and try to focus on positive things,” Renelle says. “I don’t know why I have cancer. I just do. It is what it is, so I might as well make the best of it.”
How has she made the best of it? By seizing every opportunity to live the life she wants to live. During a break in treatment, she traveled to Australia for a horseback and camping trip in the mountains, thanks to a free plane ticket from a friend. Now that her treatment requires her to stay closer to home, Renelle has turned her attention to the treasure hunt—it inspires and energizes her. She feels hopeful, like she’s gaining on the treasure and not wasting a moment of her life.
Balancing Life and Treatment
What Renelle and many other cancer patients have learned is that alongside cancer and its treatment, daily life—with all of its responsibilities and challenges—keeps on coming. That can be one of the most challenging aspects of living with metastatic cancer: how do you juggle everything? Support is key, and Renelle has a lot of it. She has learned to accept help from friends and family.
“The cancer won’t leave me alone to do the things I want to do, but I just try to appreciate life,” Renelle says. “Every cancer patient, if they’re paying attention, receives the gift of knowing that you just shouldn’t take anything for granted ever. It’s a gift I wish I could pass on to everyone without all the ickiness that comes with it.”
Dr. Gralow says that this is a common perspective: “A lot of times a metastatic diagnosis helps you reprioritize what is important in your life. Life is precious. All of us could die at any time. A cancer diagnosis helps us try to get rid of the junk in our life, as much as we can, and make sure that we’re doing the things that are important to us.”
For some people that means quitting their job or going on disability. “I’ve had patients say, ‘My job is not very rewarding.’ So they use it as an opportunity to make a change,” Dr. Gralow says. “Any metastatic patient who is in treatment, I can justify helping them get on disability.”
Other patients love their jobs, and they find a way to balance work and treatment. Everyone is different, but the common thread is that cancer is the great “re-prioritizer.” “Whatever you want to do, get it in while you can,” Renelle insists. “Make it happen.”
The Future of Metastatic Treatment
Doctors have made enormous strides in treating metastatic cancer in the past decade, and the trend will likely continue. “I think the treatment of metastatic disease is really hopeful in the genomics era,” Dr. Gralow says. “It’s certainly going to help us with allowing metastatic disease to become more like a chronic disease. For some patients we may even be able to say we’ve cured their metastatic disease.”
One promising development: patients are living long enough to gain access to new drugs. They are hitchhiking, so to speak, onto the next treatment strategy. “In two years we’re going to have a whole bunch of different drugs,” Dr. Gralow says. Translation: As new treatments become available, there is hope for those living with metastatic disease. And hope, it turns out, is perhaps the most important strategy of all.
“I’m not going to give up ever,” Renelle insists. Of course not; she still has a treasure to find.
Tips from the Trenches
Renelle Jacobson has been living with cancer since 2009. She has a list of reminders that help her navigate the challenge.
- Don’t complain. “Whining about something doesn’t do any good, and it makes it miserable for the people around me.”
- Look good. Feel Good. “The less I look like a cancer patient, the less I feel like a cancer patient,” Renelle says. “It’s hard, and often impossible, to look good while on chemo. I often don’t succeed, but I feel it’s important to try.”
- Have fun. “Fun—and anticipating fun—is good medicine. I always try to have a fun adventure or project planned.”
- Laugh. “It is a bad situation indeed where no humor can be found. I find myself in such ridiculous situations sometimes that I can’t help but see the humor. The day I can’t laugh at myself is the day I’m in real trouble.”
- Stay connected. “Keep up good communication with friends. It’s crucial.”
Copyright © 2018 CancerConnect. All Rights Reserved.