The U.S. Food & Drug Administration today announced the first change in 40 years in the standard way that patients newly diagnosed with advanced Hodgkin lymphoma (HL) should be treated.
Today’s FDA approval of brentuximab vedotin (Adcetris®) in combination with chemotherapy to treat Stage 3 and Stage 4 HL patients who are newly diagnosed and have received no prior treatment, is significant for a patient population that has seen no change in the standard of care in more than four decades.
Before today’s decision, the standard care for newly diagnosed HL patients with advanced disease was a combination of four chemotherapy drugs: adriamycin, vinblastine, dacarbazine and bleomycin. The new regimen removes bleomycin from the mix, due to its intense toxicity, and replaces it with brentuximab vedotin, a therapy in a class of medicines known as antibody-drug conjugates: the antibody, which helps the drug home in on its target on the surface of HL cancer cells, is attached to a toxin that attacks and kills the cancer cells. The other three chemotherapy drugs remain in the approved regimen.
More than 8,500 people in the United States are diagnosed with Hodgkin lymphoma each year, and about half of these are diagnosed with Stage 3 or 4, meaning they are in advanced stages of the disease. HL represents approximately 10 percent of all lymphoma cases diagnosed each year, and is characterized by a specific malignant cell called the Reed-Sternberg cell. HL is considered very treatable, even curable, but the standard chemotherapy regimen causes very serious and sometimes harmful side effects. And approximately 30% of patients with advanced stage at diagnosis relapse after treatment, representing a critical need for better options.
Brentuximab vedotin (Adcetris) was first FDA approved in 2011 for patients who had relapsed after failing two prior treatments or had undergone a stem cell transplantation procedure but, until now, was not approved as a first-line treatment.
The approval is based on a clinical trial that showed the combination to be superior to standard care. The results, presented at the 2017 American Society of Hematology annual meeting in December, showed that patients treated with brentuximab vedotin plus AVD were 23 percent less likely to experience progression of their disease or death as compared to the standard care with just the chemo combination alone.
LLS has supported seminal work in antibody drug conjugates, opening the door to this approach for treating cancers.
“The first thing I said was, there’s no way. I consider myself the healthiest person I know. There’s nothing that I did that could have caused cancer,” Rachelle said. “I was just in complete shock.”
When Rachelle found out she had cancer, she didn’t shout it from the rooftops or post about it on Facebook; she didn’t even immediately call her mom. Instead, the then 32-year-old model and actress kept her cards close to the chest, opting to slowly let those around her in on the hand she’d been dealt. This was in stark contrast to the way cancer flooded into her life.
Several weeks before being diagnosed, Rachelle felt a lump on her belly while sunbathing; however, she had just had a baby, and she knew pregnancy does weird things to the body. She believed that was enough not to worry about it. In fact, she didn’t think again about the lump until the gynecologic annual checkup, when her OB/GYN mentioned it casually.
That’s when things started to move fast. Pregnancy-related hormones may do weird things to your body, Rachelle’s doctor told her, but that lump was worrisome. She immediately had an ultrasound, which showed what looked like a cluster of grapes in her abdomen, and so she proceeded to have a CT scan.
“I would’ve bet you a million dollars it was nothing,” Rachelle said. She was still confident that it wasn’t serious, as she started the drive home. But before she could get home, her doctor called and told her to pull over. Things didn’t look good. He thought she had a type of lymphoma or leukemia.
“The first thing I said was, there’s no way. I consider myself the healthiest person I know. There’s nothing that I did that could have caused cancer,” she said. “I was just in complete shock.” By the next morning she saw an oncologist.
How Do You Share Such a Diagnosis?
On February 14, 2017, Rachelle learned that she had advanced (stage IV) follicular non-Hodgkin lymphoma. Just 4 days later, she started her first round of chemotherapy. Follicular lymphoma is generally considered to be slow-growing, so although Rachelle had some time to decide about her treatment options, she didn’t want to waste a minute. The cancer had spread to her bones, and the PET scan looked like a glowing skeleton.
Even at stage IV, Rachelle’s prognosis was good, but she was still hesitant to tell her family about it.
“My dad passed away from kidney cancer, so telling my family was the hardest part, because they still hadn’t fully dealt with that,” Rachelle said. “Now that the ‘C’ word was back in our family, I didn’t want to share it with anyone until I really knew I was going to be okay.”
When she did tell her mom, she kept it vague at first, preferring only to say that she had cancer, but she would be completely fine after a few rounds of chemotherapy. Telling people outside her immediate family and close friends was a different story. In most cases, she chose not to tell them about her diagnosis at all.
This wasn’t always easy as a working model and actress. Rachelle opted not to get an implantable port in her chest for the chemo infusions, because it would have made it obvious she was receiving chemotherapy. Instead, she got all the chemo infusions through veins in her arm, which left needle marks: on one modeling shoot, the makeup artist had to cover them. Looking back, Rachelle can only imagine what they thought was the cause of them. One thing that helped Rachelle maintain a sense of normalcy, at least in her work, was that the chemotherapy she was using did not cause hair loss. She even modeled in a hair campaign while undergoing treatment.
“People get through things in their own way. Sometimes we judge how people handle different situations, but this was the way I had to handle it,” Ra-chelle said. “It was much easier for me to live a regular life when I wasn’t in treatment. I could work or do preschool pickup; I didn’t have to be a patient with cancer 24 hours a day.”
Finding a Support Network Online
In her normal everyday life, Rachelle was able to be secretive about her cancer experience, but online she found a platform for talking about it.
“I Googled so many different things in the time between the biopsy and the doctor’s appointment where I got the results. I thought follicular lymphoma was the least likely,” she said. Follicular lymphoma is most common at age 60 or older.
“I couldn’t find anything anywhere on the Internet, or in books, about people my age dealing with this type of cancer. There was very little representation of young adults with my diagnosis,” she said. About a month into treatment, she joined a Facebook support group for people dealing with follicular lymphoma.
“That was the single greatest thing I did during my cancer experience. I didn’t feel alone,” she said. After making her first post online, seeking out reassurance on her prognosis, people chimed in from all over the world, some even messaging her privately to offer support and personal stories. She also connected with the Leukemia & Lymphoma Society (www.lls.org), which has many resources online, including a free online network (LLS Community) that provides support and education to patients living with all types of blood cancers, including follicular lymphoma, and their caregivers.
With this new-found support online, and the ability to maintain some sort of normalcy in real life, Rachelle made it through 6 months of chemotherapy, with relative ease.
“It wasn’t that bad of a year,” Rachelle said. “It brought so much amazing beauty, and all these experiences, into our lives. I’m thankful for every single morning that I wake up. I try not to put cancer at the forefront of my mind.”
Remaining Positive in the Face of Continuing Uncertainty
Although Rachelle’s most recent PET scan came back clean, and her cancer is in remission, she’s not in the clear. As her doctor put it, it’s not a matter of “if” the cancer will return, but “when.” For now, Rachelle refuses to let the fear of what may happen tomorrow define her life today.
“There comes a point where you have to live your life and kind of deal with what comes of it. I can still treat whatever does happen. I’m just trying to live my life knowing that there are possibilities. At 33 years old, I am ready for any fight.”
Rachelle has brought that positive outlook to her Facebook support group, providing advice and guidance to the women who are newly diagnosed with cancer and are looking for a safe place to share and learn about their disease.
“I’m on that Facebook page every single day. I am so thankful to everyone in that group. I offer as much as I can possibly give,” she says.
“I remember what it’s like to join that group, and know nothing, and question whether I would be able to get through this, especially if you are a young patient with cancer and have never witnessed someone go through the process,” Rachelle says. “Joining that group is the comfort of knowing that yes, it’s scary, but you can get through it. I was in this boat 6 months ago, and here I am now. I would lay in bed crying. Now, after being through it, I realize that it’s so manageable.”
For now, Rachelle offers the support and advice to newcomers in the group from the perspective of someone who has made it through treatment and is in remission, but she knows the hand she’s been dealt will most likely bring cancer back into her life at some point.
“The term ‘incurable’ is terrifying, because you think it means terminal, but it’s actually very manageable. You can find comfort in knowing that if you are going to get follicular lymphoma, it is a chronic manageable condition,” Rachelle says. “This is not a one and done cancer. My journey is not over, but I have a lot of life left to live.”
76-year-old Barbara Borrell is a woman who wears many hats – a 50+ year registered dietitian, nutrition consultant and educator, cancer advocate, volunteer with The Leukemia & Lymphoma Society, and a blood cancer survivor who has battled not one, not two, but three types of blood cancer.
Born with type one diabetes, Barbara has combated health problems for as long as she can remember. This fueled her passion for nutrition and healthy eating from a very young age, and eventually led her to embark on a career as a dietitian. In 1993 at 50 years old, Barbara had to watch her diet even closer when a routine blood test revealed she had an incurable form of blood cancer, chronic lymphocytic leukemia.
Since her initial diagnosis, Barbara has battled two additional types of blood cancer: small lymphocytic lymphoma and non-Hodgkin lymphoma. She has received numerous treatments, including immunotherapy and chemotherapy. But since 2011, Barbara has been off standard treatment, and focuses on maintaining a healthy lifestyle. When talking to blood cancer patients, especially those going through treatment, she stresses the importance of eating well.
In honor of National Nutrition Month, Barbara shared some valuable firsthand advice about healthy eating for blood cancer patients and survivors.
Why is healthy eating so important for blood cancer patients going through treatment?
Eating well can help you feel better and stay stronger during and after cancer treatment. Patients who eat well and maintain a healthy body weight can often tolerate treatment side effects better. And good nutrition also helps the body replace blood cells and tissues broken down by treatment.
What are some unique challenges cancer patients face while trying to maintain a healthy diet during treatment?
The most difficult challenge is probably losing your taste buds and appetite overall. Low-salt chicken noodle soup and canned peaches were my go-to choices when I was going through chemo. It’s important to drink lots of water to maintain hydration. If you aren’t privy to plain water, add chopped fruits to your water like strawberries or oranges. It gives it a nice taste with the same nutritional benefits. Avoid sugary drinks such as soda.
Tell us about the healthy eating guidelines you follow?
There are a couple phrases I live by:
Eat the rainbow to stay colorful: By that, I simply mean eat lots of different types of vegetables and fruits; they should always be the heart of every meal. Most likely, the more colorful your plate, the healthier it is.
Fuel your body, just like you do your car: Food should serve a purpose: to replenish your body, not just your cravings. In addition to fruits and veggies, a healthy diet should include whole grains, low-fat dairy and proteins, and healthy oils like olive oil. Limit your saturated fats to less than 10% of all calories consumed each day.
Be mindful of portion control: Remember that our eyes will always have a bigger appetite than our stomachs. We’re most likely to try and finish whatever is on our plate, so try cutting down your portions by a little. You’ll be surprised how full you feel even with a smaller amount of food. And remember, quality of foods over quantity.
What advice do you suggest for those who are having difficulty succumbing to unhealthy cravings?
Listen, it’s ok to enjoy yourself once in a while, but in moderation, and always after you’ve eaten a healthy meal first. If you’re craving ice cream for example, you don’t have to eat the whole tube. Just have a couple spoonfuls to satisfy your craving, and remember that it is your reward for eating a fuel-based meal before.
What sort of food handling regimen do you follow?
The immune system is often weakened by cancer treatments, which can make the body more susceptible to foodborne illnesses. If you had a stem cell transplant, your diet might be stricter than that of a patient who had chemotherapy or radiation therapy and no transplant. Always avoid raw meat, unpasteurized beverages, mold-ripened cheeses such as blue cheese and wash fresh fruits and vegetables thoroughly. I soak mine in water and apple cider vinegar so they’re extra clean.
Above all, remember that the benefits of healthy eating can stretch further when you incorporate exercise into your lifestyle. You don’t have to have an expensive gym pass or heavy equipment. You can modify your normal routines with gentle activity like taking the stairs instead of the elevator or walking around the store a couple times before going in. It all adds up!
Learn more about healthy eating in these three easy ways:
1) Read more nutrition tips here.
2) Tune in to The LLS Bloodline for a podcast on eating well
3) LLS offers blood cancer patients and caregivers a free one-on-one phone and email consultations with a nutrition educator. If you'd like more information, please contact an Information Specialist or request a consult here.