Learning about Lymphoma
- Paige McLaughlin was diagnosed with diffuse large B-cell non-Hodgkin lymphoma on July 23, 2021. But her intiial symptoms began in early April of 2021 when she “developed a slight pressure just above [her] sternum.” Sadly, doctors kept misdiagnosing her with acid reflux.
- Now, she wants others to trust themselves when they “feel that something is ‘off’ in [their] body.”
- Lymphoma is a type of blood cancer. Early symptoms of the disease can be tricky to notice as they may include swollen lymph nodes, fatigue or unexplained weight loss.
- Lymphoma treatment, in general, depends greatly on the nature of your specific diagnosis. And one of our experts says "unlike other cancers, where advanced stage is a death sentence, that's certainly not the case for lymphoma."
- There have been many advances made in the world of lymphoma treatment. One such advancement was the April 2022 FDA approval of Yescarta (axicabtagene ciloleucel) CAR T-cell therapy as a treatment for certain patients with large B-cell lymphoma that has returned. CAR T-cell therapy takes T-cells from a patient's immune system and genetically modifies them to recognize and kill cancer cells.
McLaughlin’s cancer story begins before she had answers. More specifically, in early April of 2021 when the mother “developed a slight pressure just above [her] sternum.”
Read MoreBut McLaughlin was already on a daily reflux medication “that had been doing it's job,” so she outwardly questioned the doctor.@paigernet Reply to @jerseygirl134477 Early #lymphoma Symptoms – #fcancer #DoTheJuJu #chemo #dlbcl #cancersucks #fyp #baldgirl #effcancer #chemotherapy #nonhodgkinslymphoma #cancerfighter ♬ Evanescent Nose – DJ BAI
“I wanted to go for an endoscopy but she said that that procedure was overkill,” she wrote. “She insisted that there were other steps that would come first. She referred me to an ENT to do a scope of my throat.”
“That scope of my throat involved some numbing nasal spray and a small scope going up my nose and into the back of my throat. Nothing abnormal was discovered. The ENT commented that everything looked good. He concurred that my ailment was probably acid reflux related. I STILL didn't agree and said so. I have experience with reflux. This was not that.”
After obliging her requests, doctors scheduled an endoscopy. But, oddly enough, this test also showed no signs of cancer.
“Knowing what I know now, I am completely incredulous to the fact that they didn't discover the large mass that had been gripping my esophagus,” she wrote.
At this point, McLaughlin’s symptoms were only getting worse. She started to lose her appetite. And when she did eat, her food wouldn’t go down correctly.
“It felt like it was getting stuck in my esophagus,” she explained. “Sometimes it would sit there and burn. Liquids were OK. Food was bad.
“I remember trying to take a vitamin one morning and it got stuck going down. It was scary because it really burned. The only way to get it out of there was to put my finger down my throat to bring it back up. That was the end of my taking my medications or vitamins.”
@paigernet One year later – #effcancer #dlbcl #lymphoma #fcancer #chemotherapy #radiation #petscan #youhavecancer #nonhodgkinslymphoma #TeamUSATryout #fyp #mytribe #onelongyear #fyp #chemo #fear #faith #bluewig #bluehair #baldgirl ♬ AIN’T GONNA STOP – Carol Kay
McLaughlin knew she couldn’t ease up on her search for answers. She “KNEW something larger was going on.” But when she went back to the gastroenterologist for a follow-up, he wanted to study the PH of her stomach because he still thought her problems were acid-related.
“While I knew that this wasn't going to be helpful, I felt like I needed to prove to the doctors that IT WASN'T ACID,” she wrote. “Getting the test would help rule out acid once and for all, I thought.
“Fortunately for me, I never had to go through that test.”
Prior to the schedule date for that test, McLaughlin developed a cough that brought her to an urgent care. It was there that doctors finally discovered the mass. She was diagnosed with diffuse large B-cell non-Hodgkin lymphoma on July 23, 2021.
@paigernet Diagnosed with Non-Hodgkins Lymphoma on July 23rd. #mindblown #fcancer #WelcomeBack #fypã‚· #lymphoma #chemo ##cancer #cancerfighter ♬ Get You The Moon – Kina
Ever since then, McLaughlin has been sharing her journey via her TikTok platform and her blog.
“She is an open book and tells her story in its raw, honest form,” the bio on her blog reads. “Her goal is to take her experiences from her arduous battle and translate them into inspiration and hope for others.”
She’s had chemotherapy, radiation and surgeries for both her cancer and resulting complications from treatment. Hopefully, she’ll receive good news after her upcoming PET scan.
And as for her advice to others regarding getting to a correct diagnosis, McLaughlin’s message is simple: “Trust yourself.”
“When you feel that something is "off" in your body, trust yourself,” she wrote in her blog. “I've found that ignorance isn't bliss in this case.
“Bottom line? If you have abnormal symptoms that just don't feel right, stay with it!! Don't let your doctors minimize your concern. Document everything. Write down dates and symptoms in a notebook. Carry that notebook along with you for consistency. I HOPE that you find out that your ailment isn't anything serious. It's never a waste of time to keep records. Whatever the outcome, you'll be glad you did!”
@paigernet Life after cancer – #stillblessed #lungdamage #pneumonitis #radiationdamage #steroid #steroidweightgain #phrenicnerve #phrenicnervedamage #paralyzeddiaphragm #breathing #fyp #serenitynow #radiation #lymphoma #dlbcl #thyroidectomy #WorldPrincessWeek #ctscan #surgery #coughingupalung #oxygen #shortnessofbreath ♬ Vibes – ZHRMusic
Understanding Lymphoma
Lymphoma is a type of blood cancer. Blood cancers can affect the bone marrow, blood cells, lymph nodes and other parts of the lymphatic system. The Leukemia & Lymphoma Society reports that every 3 minutes, one person in the U.S. is diagnosed with a blood cancer.
More specifically, lymphoma is a cancer of the immune system that begins in the white blood cells called lymphocytes. Lymphoma begins when lymphocytes develop a genetic mutation that makes them multiply much faster than normal. This mutation also forces older cells that would normally die to stay alive. From there, the quickly multiplying lymphocytes collect and build up in your lymph nodes, the small glands in your neck, armpits, and other parts of your body.
What Kind of Lymphoma Do You Have? Why Your Type Matters
It's important to note there are more than 40 different types of lymphoma. Hodgkin lymphoma and non-Hodgkin lymphoma are the main two sub-categories with the latter being more common. Diffuse large B-cell lymphoma (DLBCL) is the most common form of lymphoma.
The type of white blood cells linked to the disease determines the distinction between Hodgkin lymphoma and non-Hodgkin lymphoma. If doctors are unable to detect the Reed-Sternberg cell a giant cell derived from B lymphocytes then the cancer is categorized as non-Hodgkin lymphoma.
You might be at a higher risk for lymphoma if you:
- Have been infected with the HIV or Epstein-Barr virus
- Had an organ transplant
- Have a family history of lymphoma
- Have been treated with radiation or chemotherapy drugs for cancer in the past
- Have an autoimmune disease
Signs of Lymphoma
One thing to note about lymphomas is this type of cancer often creeps in quietly, without symptoms. And even when symptoms do show up, they don't necessarily point directly to cancer. In a previous interview with SurvivorNet, Dr. Elise Chong, a medical oncologist at Penn Medicine, explained that lymphoma symptoms could be difficult to detect.
Sneaky Lymphoma Symptoms Often Lead to a Late Diagnosis
"The symptoms of lymphoma, especially if you have a low-grade lymphoma, often are no symptoms," Dr. Chong explained. "People say, but I feel completely fine, and that's very normal."
People with lymphoma do not always have symptoms, but common signs are:
- Swollen glands in your neck, armpit or groin
- Fever
- Chills
- Night sweats
- Unexplained weight loss
- Feeling tired
- Swelling in your stomach
No matter what, it's important to communicate anything unusual happening to your body with your doctor. Even if there's nothing to worry about, it's good to rule out the possibility of more serious issues.
Treatment Options
Lymphoma treatment, in general, depends greatly on the nature of your specific diagnosis. For non-Hodgkin lymphoma patients, their cancer is more likely to spread in a random fashion and be found in different groups of lymph nodes in the body. Hodgkin lymphoma cancers, on the other hand, are more likely to grow in a uniform way from one group of lymph nodes directly to another.
And even if you're not diagnosed until a later stage, Dr. Chong assured SurvivorNet that "unlike other cancers, where advanced stage is a death sentence, that's certainly not the case for lymphoma."
"We have many treatments with which people can either be cured with advanced stage lymphoma or have very good remissions," Dr. Chong said. "So it doesn't change how treatable someone is, even when they do have advanced stage lymphoma."
Some lymphomas, called indolent lymphomas, might not even need to be treated right away because they're slow-growing. In this case, careful monitoring including imaging scans such as PET/CT is used to track the progress of the cancer and gauge whether it needs treatment yet.
"Where I use PET/CT in my practice quite a bit is if I'm observing a patient … and there is some new symptom or situation which makes me concerned that the patient may be changing from an indolent lymphoma to a more aggressive lymphoma," Dr. Jakub Svoboda, a medical oncologist at Penn Medicine, previously told SurvivorNet. "We refer to it as transformation."
Advances in Lymphoma Treatment
And thankfully, advancements in lymphoma treatment are being made. The National Cancer Institute states that most research on treatment for non-Hodgkin lymphoma is now focused on targeted therapy and immunotherapy, and researchers are also trying to identify gene changes in different types of lymphoma that might be targets for new drug development.
One exciting development from earlier this year was the U.S. Food and Drug Administration approval of Yescarta (axicabtagene ciloleucel) CAR T-cell therapy as a treatment for certain adult patients with large B-cell lymphoma (LBCL) that comes back.
CAR T-cell therapy stands for chimeric antigen receptor T-cell therapy, and it is a type of immunotherapy that uses your own immune cells to fight cancer.
Yescarta was already approved for LBCL patients who've had their second relapse, but the April 2022 approval meant that patients who experienced their first relapse within a year or didn't respond to treatment at all could use the drug. More specifically, the drug was approved for adult patients with large B-cell lymphoma that is refractory (stopped responding) to first-line chemo-immunotherapy or relapsed (came back) within 12 months of first-line chemo-immunotherapy. First-line therapy is the first treatment given for a disease.
Dr. Alison Sehgal, a study investigator for the landmark clinical trial that the approval was based on, spoke with SurvivorNet about what the expanding availability of this drug could do for patients.
"(The current standard of care) doesn't work very well in that population, and that population is a pretty big group of people, unfortunately," Dr. Alison Sehgal, a hematologist and medical oncologist at UPMC Hillman Cancer Center in Pittsburgh, Penn., told SurvivorNet. "This is really practice-changing for a big portion of people with large B-cell lymphoma."
The ibrutinib is also currently being used and tested for lymphoma patients in a number of ways. This drug was developed to shut down the B-cell receptor signaling pathway that drives many types of non-Hodgkin lymphoma.
During the annual conference of the American Society of Clinical Oncology, an important new study found that ibrutinib shows some effectiveness in fighting a type of non-Hodgkin lymphoma called mantle cell lymphoma (MCL) though it doesn't increase the overall survival rate for patients with this disease as of yet.
According to data from the randomized, phase 3 SHINE trial, using ibrutinib in combination with the standard of care regimen can improve progression-free survival, or PFS, by 2.3 years among newly diagnosed patients with MCL. PFS is the length of time from random assignment to disease progression or death. In addition, there was also higher toxicity noted with the three drug regimen that included ibrutinib.
"It is still too soon to say if this regimen will lead to a new standard of care for older patients with mantle cell lymphoma," Dr. Bijal Shah, a medical oncologist in Moffitt Cancer Center's Malignant Hematology Department, told SurvivorNet. "I think a major challenge with the data presented relates to the need and benefit versus the toxicity of adding bendamustine.
"Notably, overall survival was not improved, and it suggests that a safe alternative is to deliver ibrutinib-based therapy at the time of relapse. It is hoped with future BTKi trials, we will learn more about the importance, or lack thereof, of the bendamustine component."
According to the National Cancer Institute, the drug has been approved for the treatment of small lymphocytic lymphoma and Waldenstrom macroglobulinemia, both indolent non-Hodgkin lymphomas, in the last several years. It has also received approval for mantle cell lymphoma (which can be aggressive or indolent) and marginal zone lymphoma (indolent).
There are also plenty of other improvements being made and drugs being studied at this time. If you've been diagnosed with lymphoma, make sure to discuss all your treatment options with your doctor. And don't be afraid to seek out multiple opinions on what treatment path is best for you.
Contributing: Laura Gesualdi-Gilmore, Dr. Sufana Shikdar
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