Coping With a Lymphoma Diagnosis
- For celebrity stylist Joanna Hillman, years of unexplained gut issues and countless medical tests finally led to the discovery of a mass in her appendix, which revealed high-grade B-cell aggressive lymphoma.
- Large B-cell lymphoma (LBCL) is the most common type of Non-Hodgkin Lymphoma, a cancer that starts in white blood cells called lymphocytes. The most frequent subtype is diffuse large B-cell lymphoma (DLBCL). It’s considered aggressive, which means it tends to grow quickly.
- Hillman’s treatment included a chemotherapy drug combination called R-CHOP, a standard treatment for diffuse large B-cell lymphoma. According to research published in the New England Journal of Medicine, while RCHOP helps many patients, only about 60% are cured.
- For stage 1 or 2 cancer, the RCHOP treatment should take about three months. “It’s three to four treatments with combination chemotherapy and monoclonal antibody therapy, and then a few weeks of radiation therapy, and you’re done,” Dr. Stephen Schuster, medical oncologist at Penn Medicine, tells SurvivorNet.
- Treatment side effects may include fatigue, mouth sores, and hair loss, but Dr. Schuster says, “it’s a brief period in your life, and it’s a small price to pay for getting into remission and having this disease behind you.”
View this post on InstagramRead MoreFor years, Hillman explained in Bazaar Magazine, she endured persistent gut issues.“I did my due diligence, got colonoscopies and endoscopies accompanied by endless stool and blood tests. Doctor visit after doctor visit, and still no explanation,” she said.
The uncertainty was nearly too much to bear as Hillman wondered and worried about what was going on. Then, she finally received an MRI that revealed that she had a large mass in her appendix.
“Finally, some explanation for why I hadn’t been feeling well for so long,” Hillman said.
The appendectomy (removal of the appendix) confirmed that she had high-grade B-cell aggressive lymphoma. According to the American Cancer Society, “B-cell lymphomas make up about 85% of non-Hodgkin lymphomas in the U.S.”
Large B-cell lymphoma (LBCL) is the most common type of non-Hodgkin lymphoma, a cancer that starts in white blood cells called lymphocytes. These cells are part of the immune system, and when they begin to grow uncontrollably, they can form tumors in the lymph nodes or other organs such as the spleen, liver, or bone marrow.
The most frequent subtype is diffuse large B-cell lymphoma (DLBCL). It’s considered aggressive, which means it tends to grow quickly — but that also means it often responds well to prompt, effective treatment.
WATCH: Non-Hodgkin Lymphoma: It’s More Than Just One Type
Hillam says her treatment had to begin immediately, and the chemo took a major toll on her physically and emotionally.
Hillman’s Treatment Journey
Hillman says that her prognosis would be good if she completed chemotherapy, but the journey would be grueling.
“I was told I would lose my hair. It would not be a picnic,” Hillman said.
Part of Hillman’s treatment was the R-CHOP regimen.
Dr. Lawrence Piro, President and CEO of The Angeles Clinic and Research Institute in Los Angeles, is affiliated with Cedars-Sinai. He says Non-Hodgkin lymphoma treatment depends on the type, stage, and how fast it grows. People with aggressive non-Hodgkin lymphoma can expect to get a chemotherapy combination called R-CHOP, which is a drug cocktail consisting of chemotherapy drugs plus an antibody drug and a steroid to treat diffuse large B-cell non-Hodgkin lymphoma.
R-CHOP stands for:
- R: Rituximab (Rituxan) is a monoclonal antibody that attaches to a specific protein called CD20, which sits on the surface of B cells. It targets cancerous cells and destroys them.
- C: Cyclophosphamide is a type of chemotherapy drug
- D: Doxorubicin hydrochloride (hydroxydaunomycin) is a type of chemotherapy drug
- V: Vincristine sulfate (Oncovin) is a type of chemotherapy drug
- P: Prednisone is a steroid that lowers inflammation
Patients receiving R-CHOP receive the drug in six cycles that are three weeks apart.
“R-CHOP is a cocktail of drugs. There are five different drugs in that recipe,” Dr. Jennifer Crombie, medical oncologist at Dana-Farber Cancer Institute, tells SurvivorNet.
For stage 1 or 2 cancer, the whole treatment should take about three months. “It’s three to four treatments with combination chemotherapy and monoclonal antibody therapy, and then a few weeks of radiation therapy, and you’re done,” Dr. Stephen Schuster, medical oncologist at Penn Medicine, tells SurvivorNet.
You may also receive six treatments of the combination chemotherapy without any radiation, Dr. Schuster adds.
WATCH: Understanding R-CHOP treatment.
R-CHOP side effects can include:
- Tiredness and weakness
- Hair loss
- Mouth sores
- Bruising and bleeding
- Increased risk of infection
- Appetite loss and weight loss
- Changes in bowel movements
Immunotherapy and targeted therapy are also treatment options for Non-Hodgkin Lymphoma patients.
Rituximab (Rituxan) was the first immunotherapy drug approved to treat some forms of non-Hodgkin lymphoma. “Rituximab is the immunotherapy that has been approved the longest, and we have the most experience with lymphoma,” Dr. Elise Chong, a medical oncologist at Penn Medicine, tells SurvivorNet.
Rituxan has side effects, including fever, chills, swelling under the skin, itching, and mild shortness of breath.
Hillman says the side effects left her feeling as though she had contracted a strange flu every 21 days.
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“It took over my body in different ways—very much a moving target—but generally I was able to function relatively normally,” Hillman explained.
As expected, Hillman lost her hair during treatment, one of the most visible markers of her cancer journey.
While hair loss from chemotherapy is temporary—typically beginning three to four weeks into treatment and regrowing four to six weeks after its completion—the emotional toll can linger.
WATCH: Coping With Hair Loss & the Anxiety it Brings.
“For cancer patients, losing one’s hair can be unbelievably stressful. The dread alone can lead to sleepless nights and heightened anxiety,” says Dr. Samantha Boardman, a New York-based psychiatrist and author.
While chemotherapy is a common cause of hair loss, radiation can also lead to thinning or baldness—especially when the treatment area includes the scalp. For instance, radiation targeting a brain tumor may result in hair loss on the head.
The good news? Hair typically begins to regrow within four to six weeks after treatment ends. According to Dr. James Taylor, a radiation oncologist at GenesisCare, “Fortunately, for most patients, hair loss is not a concern when having radiation therapy.” Still, regrowth may come with changes in texture or color.
Hillman sought out a wig maker to help regain a sense of normalcy. However, she ultimately embraced the changes her cancer journey brought her.
“Turns out that ‘self’ felt very different and changed. I didn’t want to cover up what I was going through. It felt like a badge of honor.”
WATCH: What is a scalp-cooling device?
However, for many cancer patients, their hair is a vital part of their identity, and options exist to help reclaim it during treatment.
One promising option for minimizing hair loss during chemotherapy is cold capping, also known as scalp cooling therapy. These FDA-approved devices—initially for breast cancer and now used for other cancers—are worn before, during, and after chemo sessions. The helmet-style caps are filled with gel coolant chilled to between -15°F and -40°F.
“Cold caps work by causing vasoconstriction, or narrowing of the blood vessels that supply blood to the scalp,” explains Dr. Renata Urban, gynecologic oncologist at the University of Washington.
This reduced blood flow limits the amount of chemotherapy that reaches hair follicles, helping protect them from damage. The cold also slows down follicle activity, making them less vulnerable to the effects of treatment.
If hair loss is a concern, know that you have options—from wigs and wraps to hats and scarves—that can help you feel more like yourself during treatment.
Finding Strength in the Present
Although the rigors of treatment took their toll, Hillman tried her best to stay grounded, and that meant focusing on self-care.
“I began to meditate. I concentrated on putting one foot in front of the other instead of constantly rushing. Anxiety lives in the future—and I did whatever I could to stay in the right now,” Hillman said.
Research published in Epidemiology and Psychiatric Sciences shows that 35–40% of cancer patients live with a diagnosable psychiatric disorder, with rates climbing higher in advanced stages and palliative care.
Dr. Asher Aladjem, a board-certified psychiatrist at NYU Langone, explains that anxiety is a natural response—but one that can interfere with treatment.
WATCH: How Genetic Testing Can Help Determine the Right Form of Mental Health Treatment.
“Sometimes the anxiety gets to the point that things stand in the way of the scan or whatever the test is, and people avoid it and run away from it. Treating the anxiety allows for the completion of the workup or the treatment in a much more effective way,” he said.
Dr. Aladjem urges patients to advocate for their mental health, even if services aren’t automatically offered during cancer treatment.
“We are trying to advocate for patients to be able to get the services that they need—whether it’s medications, therapy, or nursing support.”
Licensed counselor Bailey Pyle of Burrell Behavioral Health adds that a cancer diagnosis often triggers grief, as patients mourn the loss of their former health and expectations for the future.
“It’s a grieving process over what we expected the next years of our life to look like,” she explained to KOMU News, noting that the emotional impact extends to families and loved ones.
Hillman also leaned on her support system, inviting family and close friends to accompany her to treatments. In the midst of juggling medications and their side effects, because she had loved ones by her side, it became somewhat of a communal experience and turned unexpectedly joyful.
“It was the most fun I had each month,” Hillman said.
Cancer Taught Hillman to Celebrate Small Wins and Embrace Joyful Moments
Hillman learned to celebrate the everyday victories: walking her children to school, cooking for her family, or bouncing on a mini trampoline. She calls these moments a “joy grab”— spontaneous moments of happiness whenever she felt well enough.
“If I surprisingly felt well, I would call a friend to hang out,” Hillman explained.
She also learned to embrace more self-care by doing things that simply made her feel good about herself.
“Simple but powerful rituals and products brought small amounts of relief that began to add up: a hot shower, a luxe body cream, an aromatic face oil, a cozy cashmere sweater,” Hillman explained.
When the mother of two and fashion guru finally reached the end of her scheduled treatment regimen, which included grueling weeks of chemo, she rang the ‘call of courage bell’ at the hospital.
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At Memorial Sloan Kettering, Hillman marked the end of chemotherapy by ringing the “call for courage” bell.
“I rang it with gratitude,” she said.
“They say cancer changes you. I used to think that meant for the worse. Now I realize that the real gift is feeling your own mortality so you don’t waste one more minute of this beautiful life,” Hillman said humbly.
Better Understanding Non-Hodgkin Lymphoma
“Non-Hodgkin lymphoma is a big category,” Dr. Julie Vose, chief of hematology/oncology at the University of Nebraska Medical Center, previously told SurvivorNet.
All non-Hodgkin lymphomas begin in white blood cells known as lymphocytes, which are part of your body’s immune system. From there, doctors separate these cancers into types depending on the specific kind of lymphocytes they grow from, B-cells or T-cells.
WATCH: The type of lymphoma you have matters.
Knowing which of these you have can help steer you to the most appropriate treatment.
One way doctors divide up these cancers is based on how fast they’re likely to grow and spread. “The two main classifications I think of in terms of non-Hodgkin lymphoma are lymphomas that are more indolent and those that are more aggressive because those are treated very differently,” Dr. Jennifer Crombie, medical oncologist at Dana-Farber Cancer Institute, tells SurvivorNet.
Once you’ve been diagnosed with non-Hodgkin lymphoma, the next question your doctor will want to answer is whether you have B-cell or T-cell lymphoma. That answer is important because it will help determine your treatment.
B-cells and T-cells are two kinds of lymphocytes. They’re both infection-fighting cells, but they work in different ways.
About 85% of non-Hodgkin lymphomas affect B cells. These cells produce antibodies, proteins that react to foreign substances like viruses or bacteria in your body. The antibodies attach to another protein on the surface of the invading cells, called an antigen, to target and destroy them.
Types of B-cell lymphoma include:
- Diffuse large B-cell lymphoma
- Follicular lymphoma
- Small lymphocytic lymphoma (SLL)/chronic lymphocytic leukemia (CLL)
- Mantle cell lymphoma
- Marginal zone lymphomas
- Burkitt lymphoma
- T-cell lymphomas make up only 15% of non-Hodgkin lymphomas. Unlike B-cells,
- T-cells directly destroy bacteria and other invaders.
Types of T-cell lymphoma include:
- T-lymphoblastic lymphoma/leukemia
- Peripheral T-cell lymphomas
- Cutaneous T-cell lymphoma
In most cases, doctors cannot pinpoint exactly why someone develops lymphoma. However, there are some known risk factors:
- Age: It’s more common in older adults, though it can occur at any age.
- Immune system problems: People with weakened immune systems — from HIV, autoimmune diseases, or certain medications — have a higher risk.
- Family history or previous cancers: These can slightly increase risk, though lymphoma isn’t typically inherited.
- Infections: Rarely, chronic infections such as H. pylori or hepatitis C may play a role.
Questions for Your Doctor
If you are dealing with a lymphoma diagnosis, it’s important to ask your doctor a series of questions so you will have an idea of what your next steps will look like. To help you during this difficult time, SurvivorNet has some questions to kickstart your conversation with your physician.
- What type of lymphoma do I have?
- What does my pathology report say about my diagnosis?
- Should I get a second opinion before I explore possible treatment options?
- Based on my diagnosis, what do you anticipate my treatment path?
- What common side effects should I expect when I begin treatment?
- Will I be able to continue working and performing normal daily activities during treatment?
- Where can I get help working with the insurance company regarding treatment costs?
- Who do you recommend I get mental health help from during my treatment?
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