TEST: Support From All Sides: My Cancer Story

“If there’s one thing I can say about cancer treatment, it’s that no one should have to go through it alone,” says one survivor of Hodgkin lymphoma.
PUBLISHED August 23, 2018
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If there’s one thing I can say about cancer treatment, it’s that no one should have to go through it alone. It’s okay to ask for help, and most of the time, people will surprise you with how much they want to support you. In the spirit of National Family Caregivers Month, I would like to share my story about how I found support after receiving my cancer diagnosis, and why without it, I wouldn’t have been able to face this disease with the strength and optimism that I did.

Around the time I met my fiancée, I began to notice lumps in my neck and lymph nodes. I ignored the symptoms for a little while and focused on my new relationship. When I went to the doctor, he diagnosed me with a virus and prescribed antibiotics. However, more lumps appeared, which I had to have surgically removed. That’s when I received the difficult news: I had stage 4 classical Hodgkin lymphoma. Immediately after my diagnosis, doctors discovered tumors all over my lower body and extremities. My diagnosis stage is also known as advanced stage classical Hodgkin lymphoma, which meant that the cancer was more widespread throughout my body and could be present in organs outside the lymphatic system.

I was shocked and scared. Thankfully, my fiancée was there for me. We dove in headfirst and began researching about Hodgkin lymphoma and available treatment options.

Hodgkin lymphoma is a type of cancer that starts in the white blood cells, or lymphocytes, which are part of the body’s immune system. According to the American Cancer Society, it is most common in early adulthood (a person in their 20’s), and the risk rises again in late adulthood (after the age if 55). It is estimated that 8,110 patients in the United States will be diagnosed this year. It is also slightly more common in men than women, as well as those with a weakened immune system or family history of the disease. 

Other people lent their support as well. My neighbor helped me get into my preferred hospital, where I connected with an oncologist who believed I was a candidate for a clinical trial called ECHELON-1. While traditional chemotherapy had been the standard of care for the last 40 years, patients suffering from advanced Hodgkin lymphoma needed new, targeted treatment options that would work differently than chemotherapy alone. The purpose of this trial was to evaluate ADCETRIS® (brentuximab vedotin) in combination with chemotherapy, adriamycin, vinblastine and dacarbazine (AVD) for classical Hodgkin lymphoma against a standard chemotherapy regimen of adriamycin, bleomycin, vinblastine and dacarbazine (ABVD). 

The trial showed improved outcomes compared to the standard of care, and the absence of bleomycin from the regimen meant potentially less toxicity in the lungs. I saw an opportunity to try a new treatment that could help future patients with Hodgkin lymphoma.

As word started to spread about my cancer, people from all parts of my life supported me in ways I could never have imagined. My kids came to stay at the cancer home I moved into while I underwent treatment. I saw neighbors shoveling my driveway in the winter without ever being asked. Hundreds of people in my community hosted a benefit in my honor and made T-shirts that said, “Help Gene Fight.” It was so comforting and humbling to receive this support during my time of need. To this day, I couldn’t thank everyone enough for their concern and generosity.

Support like this is what helped me channel positive energy while undergoing treatment, stay mentally tough as I faced complications and multiple hospital visits and complete my chemotherapy in combination with ADCETRIS.

Today, ADCETRIS is approved for adults like me, with newly diagnosed stage 3 or 4 classical Hodgkin lymphoma in combination with chemotherapy, AVD. Studies even show that patients treated with ADCETRIS are 30% less likely to be at risk of disease progression or death compared to patients treated with traditional chemotherapy (ABVD) alone.

My treatment experience is one example. Anyone facing a Hodgkin lymphoma diagnosis should speak with their doctor about treatment options and side effects. ADCETRIS has side effects, including possible lung toxicity, low numbers of red blood cells, low numbers of white blood cells, tingling or numbness in the hands or feet, constipation, vomiting, diarrhea, fever, weight loss, mouth sores and abdominal pain. Please read the Important Safety Information, including BOXED WARNING, below.

I’m now in remission and have been able to resume aspects of my former lifestyle. Taking the steps to “be Gene” again was important to me. I’m back at work installing flooring and have even been able to get back to hobbies such as scuba diving and skiing. Having my fiancée by my side through all of this truly helped get me through the most challenging days. Cancer is tough, but in the end, it couldn’t steal my heart or my smile. I’m grateful for another chance at what lies ahead.

For more information on ADCETRIS, including Important Safety Information, please visit ADCETRIS.com. To help you talk to your doctor about the best treatment option for your diagnosis, download a guide for Questions to Ask Your Doctor.

This content is brought to you by Seattle Genetics, Inc. the maker of ADCETRIS (brentuximab vedotin).

Individual experiences may vary, and information shared in this article is not intended to replace discussions with your doctor. Talk to your doctor to see if ADCETRIS may be right for you. Gene has received reimbursement for travel associated with his past involvement with Seattle Genetics.


ADCETRIS (brentuximab vedotin) is approved for the treatment of:
  • Previously untreated Stage 3 or 4 cHL: Adult patients with newly diagnosed Stage 3 or 4 classical Hodgkin lymphoma (cHL) in combination with chemotherapy (adriamycin, vinblastine, and dacarbazine)
  • Consolidation therapy in cHL: Adult patients with cHL at high risk of coming back or becoming worse after a stem cell transplant (SCT)
  • Relapsed cHL: Adult patients with cHL after an SCT fails or after at least 2 combination chemotherapy treatments fail and SCT is not an option
  • Previously untreated sALCL or other CD30-expressing PTCL: Adult patients with newly diagnosed systemic anaplastic large cell lymphoma (sALCL) or other CD30-expressing peripheral T-cell lymphomas (PTCL), including angioimmunoblastic T-cell lymphoma and PTCL not otherwise specified, in combination with chemotherapy (cyclophosphamide, doxorubicin, and prednisone)
  • Relapsed sALCL: Adult patients with sALCL after at least 1 combination chemotherapy treatment fails
  • Relapsed pcALCL or CD30-expressing MF: Adult patients with primary cutaneous anaplastic large cell lymphoma (pcALCL) or CD30-expressing mycosis fungoides (MF) who have received prior systemic therapy (treatment that reaches and affects the entire body)

Important Safety Information

What is the most important serious safety information I should know about ADCETRIS?
  • PROGRESSIVE MULTIFOCAL LEUKOENCEPHALOPATHY (PML): Patients who are treated with ADCETRIS can have a rare, serious infection of the brain called PML. It can cause death. Symptoms started at different times after starting ADCETRIS treatment, some within 3 months after the first dose. Other possible causes of PML are prior treatments or diseases that weakened the patient’s immune system.
  • ADCETRIS should not be taken with bleomycin because of possible side effects in the lungs.
What are the other possible serious side effects of ADCETRIS?
  • Nerve damage: Peripheral neuropathy (nerve damage) that mostly involves numbness or tingling in the hands or feet (sensory) and/or weakness in the arms or legs (motor). Symptoms increase with more doses. Your doctor may change or stop your ADCETRIS dose depending on the severity of your symptoms.
  • Allergic and infusion reactions: Allergic reactions, including severe forms, during infusion or up to 24 hours after administration of ADCETRIS. Patients who had a reaction with earlier doses should receive premedication with later doses, which may include acetaminophen, an antihistamine, and a corticosteroid.
  • Blood problems: Serious cases, including deaths, of fever with a low number of white blood cells have occurred with ADCETRIS. ADCETRIS may also cause a low number of white blood cells lasting a week or more, with or without fever. A low number of platelets (which help the blood clot) or red blood cells has also occurred with ADCETRIS.
    Your doctor will give you a medicine called growth factor starting with your first dose if you are receiving ADCETRIS in combination with chemotherapy to treat Stage 3 or 4 cHL or PTCL. Growth factor is meant to prevent you from having a low number of white blood cells.
    Your blood counts will be checked before each dose, more often if necessary. You will be monitored for fever. If your white blood cell count is too low, your doctor may delay your next infusion, lower your dose, stop your ADCETRIS therapy, or give you growth factor with future doses of ADCETRIS.
  • Infections: Serious infections, including deaths, that occur when your immune system is weakened, such as pneumonia, bacteremia, and sepsis or septic shock.
  • Tumor lysis syndrome (TLS): You will be closely monitored for TLS if you have a tumor that grows quickly or have many tumor cells throughout your body.
  • Patients with severe kidney disease may have more side effects and deaths compared to patients with normal kidney function and should avoid use of ADCETRIS.
  • Patients with moderate or severe liver disease may have more side effects and deaths compared to patients with normal liver function and should avoid use of ADCETRIS.
  • Liver injury: Serious liver problems, including deaths, have been reported after the first dose of ADCETRIS and after ADCETRIS was stopped and restarted. Your liver function will be monitored. Having liver problems, raised liver enzymes, and some medicines may increase the risk. Your doctor may delay your next infusion, lower your dose, or stop your ADCETRIS therapy if you have liver problems.
  • Lung problems: Serious lung problems, including deaths, have been reported. If you have symptoms, your doctor may hold your ADCETRIS therapy until they improve.
  • Skin problems: Rare but serious skin conditions, including deaths, called Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN). If either occurs, your doctor will stop ADCETRIS and treat you for symptoms.
  • Gastrointestinal (GI) problems: Serious problems, including deaths, related to the pancreas, stomach, intestine, and colon have been reported. Lymphoma that involves the stomach or intestine may increase the risk of GI perforation (hole in the stomach or intestine).
  • Fetal harm: ADCETRIS can harm a fetus (unborn baby). Women should not become pregnant while taking ADCETRIS and for at least 6 months after the last dose of ADCETRIS.
What were the most common side effects in clinical trials?
1269 patients were treated with ADCETRIS in clinical trials (used with chemotherapy, or on its own). The most common side effects in any study were nerve damage (peripheral neuropathy) that mostly involves numbness or tingling in the hands or feet (sensory) and/or weakness in the arms or legs (motor), feeling tired, nausea, diarrhea, a low number of white blood cells, infection of the nose or sinuses, fever, constipation, vomiting, hair loss, weight loss, upper stomach pain, a low number of red blood cells, sores or swelling in the mouth, a low number of lymphocytes (a type of white blood cell), and sores or swelling in the digestive tract.

What should I tell my doctor before I start treatment with ADCETRIS?
  • Tell your doctor about all of your medical conditions. ADCETRIS should be avoided if you have severe kidney disease or moderate or severe liver disease.
  • Tell your doctor about any medicine you are taking (including over-the-counter drugs, vitamins, and herbal supplements) because it is possible for ADCETRIS to interact with certain types of drugs.
  • Tell your doctor if you are pregnant or plan to become pregnant. You should not take ADCETRIS while pregnant or breastfeeding.
  • Women should use effective birth control while taking ADCETRIS and for at least 6 months after the final dose of ADCETRIS.
  • Men with female partners should use effective birth control while taking ADCETRIS and for at least 6 months after the final dose of ADCETRIS.
Contact your doctor if you experience any of the following:
  • Symptoms of nerve damage: Tingling, burning, or numbness in the hands or feet. Changes in sense of touch or trouble moving the hands or feet.
  • Symptoms of infection: Fever of 100.5°F or higher, chills, cough, or pain upon urination.
  • Symptoms of infusion reaction: Fever, chills, rash, or breathing problems within 24 hours of infusion.
  • Symptoms of liver injury: Fatigue, anorexia, upper stomach pain, dark urine, yellowing of the skin and eyes (jaundice).
  • Symptoms of PML: Changes in mood or usual behavior. Confusion, thinking problems, or loss of memory. Changes in vision, speech, or walking. Decreased strength or weakness on one side of the body.
  • Symptoms of lung problems: New or worsening cough or shortness of breath.
  • Symptoms of acute pancreatitis: Severe abdominal pain.
  • Symptoms of GI problems: Severe stomach pain, chills, fever, nausea, vomiting, or diarrhea.
  • Pregnancy: Pregnant or breastfeeding women should not receive ADCETRIS. ADCETRIS can harm a fetus (unborn baby).
  • Any other side effects that are bothersome or do not go away.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/Safety/MedWatch or call 1-800-FDA-1088.

Please see full Prescribing Information, including BOXED WARNING.
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