How a Cancer Diagnosis Helped One Person Find Strength From Within
- Jay Swinnerton, 26, a non-binary star from the RuPaul Drag Race franchise, says their two bouts with Hodgkin lymphoma took a toll mentally and physically. Amid hair loss during treatment, Swinnerton used their alter-ego, known for lavish wigs, to cope.
- While undergoing chemo, Swinnerton experienced hair loss. Hair loss usually begins about three to four weeks after chemotherapy and continues throughout treatment. Most people can expect regrowth four to six weeks after treatment.
If losing your hair is a concern before cancer treatment, know that you have options, such as wigs, hats, wraps, and scarves, to maintain your self-esteem. - Lymphoma is a cancer of the immune system that affects infection-fighting cells called lymphocytes. Non-Hodgkin lymphoma is much more common than Hodgkin lymphoma, and it typically starts later in life.
- Treatment for non-Hodgkin often includes chemotherapy, radiation, immunotherapy, and targeted therapy.
- SurvivorNet experts say a chemotherapy combination called R-CHOP is an effective treatment for aggressive non-Hodgkin lymphoma. It stands for Rituximab (Rituxan), a monoclonal antibody, Cyclophosphamide (a type of chemotherapy drug), Doxorubicin hydrochloride (hydroxydaunomycin—a kind of chemotherapy drug), Vincristine sulfate (Oncovin—a sort of chemotherapy drug), and Prednisone (a steroid).
Swinnerton, who is a non-binary, was diagnosed with cancer twice within a year when his lymphoma returned after entering a brief period of remission. They described the experience as devastating.
Read MoreView this post on Instagram“You’re pushed to such extremes, both physically and mentally, your mind just goes to places that you didn’t even think were possible prior to having had that experience,” Swinnerton told BBC News.
Swinnerton was diagnosed with stage 4 Hodgkin lymphoma in 2017 at 19 years old. They began chemotherapy treatment shortly after being diagnosed.
Lymphoma is a blood cancer, specifically of the immune system, that affects infection-fighting cells called lymphocytes. Lymphoma treatment largely depends on the nature of your specific diagnosis. Non-Hodgkin lymphoma is more common than Hodgkin lymphoma. In non-Hodgkin lymphoma patients, cancer is more likely to spread randomly and be discovered in different groups of lymph nodes in the body.
Hodgkin lymphoma has distinctive, giant cells called Reed-Sternberg cells. These cells, which can be seen under a microscope, will help your doctor determine which of the two lymphoma types you have.
Swinnerton’s chemo treatment left an emotional scar behind and, in the process, took away a crucial part of Swinnerton’s identity: their hair. To help cope, Swinnerton found emotional refuge in their alter-ego, Shanika Sunrise, known for extravagant wigs.
“I started to do drag, and Shanika Sunrise was this product of my experience and this coping mechanism,” Swinnerton said.
Swinnerton reached remission in 2017 but experienced a relapse a year later after learning the cancer had spread, resulting in additional treatment.
“We hope for all of our lymphoma patients that the first therapy they receive will be their last therapy. That is, we can treat them and cure them with first-line therapy,” Dr. Catherine Diefenbach, medical oncologist at NYU Langone Health, tells SurvivorNet.
WATCH: What happens when you relapse?
A relapse means that you need to move on to another treatment, not that you’re out of hope or options. What happens next will depend on your type of cancer.
Swinnerton turned to a bone marrow transplant in early 2019.
WATCH: Understanding bone marrow transplants.
Dr. Caitlin Costello, a hematologist and medical oncologist at UC San Diego Health, explains what a bone marrow transplant entails.
“It’s a procedure which we’ve spent the last many weeks and months building up to, and your nurse, while you’re in the hospital, will bring over basically a bag of blood, and it feels and looks like nothing more than a blood transfusion,” Dr. Costello says.
During the transplant, patients will be connected to an IV, which will drip donor bone marrow into their system. From there, the bone marrow will enter the body through the bloodstream. Patients will be in the hospital for two to four weeks after the transplant so they can be monitored while the bone marrow fully develops. There may be side effects from the transfusion, such as significant fatigue, nausea, and a weakened immune system, but that’s what the medical team is there for.
“What we will be seeing happen to patients is that on their blood tests that we check daily, we see that their bone marrow is shutting down,” Dr. Costello says. “We see that their immune system is weakening, their bone marrow is no longer producing those immune system cells, their body is no longer producing the blood, the literal gas in their tank, and it’s during this time that we’re supporting you because we can keep your tank full, we can give you blood transfusions and platelet transfusions as a means to keep you safe.”
In addition to blood and platelet transfusions, physicians will give patients protective antibiotics to keep them safe while their immune systems are weak and the new bone marrow is growing.
Swinnerton’s bone marrow transplant was not their final treatment. They then underwent immunotherapy, which helped Swinnerton reach remission. Although Swinnerton did not detail their specific immunotherapy treatment, one such immunotherapy drug is proven to help the immune system target lymphoma cells.
WATCH: Lymphoma immunotherapy treatment.
Rituxan is a type of immunotherapy drug called a monoclonal antibody. “What that means is it’s a manufactured antibody,” Dr. Elise Chong, medical oncologist at Penn Medicine, tells SurvivorNet. “Just like our body produces antibodies, we’re able to manufacture antibodies in the lab.”
It’s designed to seek out and stick to another type of protein called an antigen on the surface of infection-fighting white blood cells, called B cells. The antigen, in this case, is CD20. Rituxan will only work on cancerous B cells with the CD20 antigen on their surface. Most T-cell lymphomas don’t contain this protein, so this treatment isn’t effective against them.
“CD20 needs to be expressed on the surface of the lymphoma cell because you want that antibody to target something that’s specific to your lymphoma,” Dr. Chong says.
Since reaching remission, Swinnerton says they have grown mentally and physically.
“There were so many curveballs. I was coming into my own in terms of my gender expression and my queerness, and then there was my drag journey – and this gave me the vocabulary to understand and comprehend my experience in a creative way,” Swinnerton told the Manchester Evening News.
Helping You Cope with Hair Loss During Treatment
Coping With Hair Loss During Treatment
Hair loss can be an emotional stage of anyone’s cancer journey. SurvivorNet has tips and resources for anyone facing this side effect and struggling to manage it.
“For cancer patients, losing one’s hair can be unbelievably stressful. To start with, the dread of losing one’s hair can lead to some sleepless nights and feelings of anxiety,” Dr. Samantha Boardman, a New York-based psychiatrist and author, told SurvivorNet.
Chemotherapy can cause hair loss. It usually begins about three to four weeks after chemotherapy and continues throughout treatment.
WATCH: Hair loss during chemo.
It happens because this treatment targets quickly dividing cells throughout the body. That includes cancer cells but also hair cells.
Radiation is another treatment that can lead to hair loss if the hair is in the path of the tumor being treated. For example, radiation for a brain tumor may cause hair loss on the head.
“If you do lose hair, it will regrow several weeks or months after treatment,” radiation oncologist at GensisCare Dr. James Taylor tells SurvivorNet.
“Fortunately, for most patients, hair loss is not a concern when having radiation therapy.”
Most patients can expect regrowth four to six weeks after treatment. However, it is possible when your hair grows back, you may notice some changes in its color and texture.
Dr. Boardman suggests connecting with others experiencing cancer treatment like yours and asking them for first-hand advice.
“Talk to people who have been through it, get their advice, voice your concerns to your caregiver, and see what they can do,” Dr. Boardman added.
If losing your hair is a concern before cancer treatment, know you have options like wigs, hats, wraps, and more.
A Proven Treatment Offering Lymphoma Patients Hope
“There are some lymphomas that are very treatable but not curable,” Dr. Lawrence Piro told SurvivorNet.
Dr. Lawrence Piro is the President and CEO of The Angeles Clinic and Research Institute in Los Angeles, a Cedars-Sinai affiliate. He adds that some lymphomas progress quickly if left untreated.
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 which 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.
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
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 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 during my treatment?
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