Support From All Sides: My Cancer Story

February 28, 2020

“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.

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. 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 prescribed me treatment for what he initially thought to be a virus. 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 of 55). It is estimated that 8,110 patients in the United States will be diagnosed in 2019. 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. The purpose of this trial was to evaluate ADCETRIS® (brentuximab vedotin) for injection in combination with chemotherapy, Adriamycin, vinblastine and dacarbazine (AVD) for stage 3 or 4 classical Hodgkin lymphoma against a standard chemotherapy regimen of Adriamycin, bleomycin, vinblastine and dacarbazine (ABVD). I saw an opportunity to try a treatment that could potentially help future patients with Hodgkin lymphoma. Today, ADCETRIS is approved for adults like me, with newly diagnosed Stage 3 or 4 classical Hodgkin lymphoma in combination with chemotherapy (AVD). ADCETRIS has an IMPORTANT WARNING for PROGRESSIVE MULTIFOCAL LEUKOENCEPHAOPATHY (PML), patients treated with ADCETRIS can have a rare, serious brain infection called PML. It can cause death. See additional Important Safety Information below.

In a large clinical study of over 1,000 patients, ADCETRIS (brentuximab vedotin) plus AVD was studied versus ABVD. Results showed that patients treated with ADCETRIS plus AVD were 23 percent less likely to receive additional treatment because cancer was still detected in the body, to die from cancer or other cause, or to have their cancer grow. Additionally, the chemotherapy regimen patients were historically treated with included bleomycin, while ADCETRIS in combination with chemotherapy is bleomycin-free. While ABVD had been the standard of care for the last 40 years, patient suffering from stage 3 or 4 classical Hodgkin lymphoma were offered another treatment option that would work differently than chemotherapy 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, and the most common side effects 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), a low number of white blood cells, nausea, constipation, vomiting, feeling tired, diarrhea, fever, hair loss, weight loss, stomach pain, a low number of red blood cells, and sores or swelling in the mouth. The most common serious adverse reactions are: low numbers of white blood cells accompanied by a fever, fever, low numbers of white blood cells, and pneumonia. For additional safety information please see the Important Safety Information below and full Prescribing Information including BOXED WARNING.

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 and stay mentally tough as I faced some complications. During my treatment, I experienced numbness and tingling in my hands and feet and had a few hospital stays, particularly one where a round of treatment put my white blood cell count to zero and I needed to stay in the hospital to fight off the infection. With the help of my support system and doctors, I was able to complete my treatment with ADCETRIS.

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 and have even been able to get back into my hobbies. 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.

Please see the Important Safety Information below and full Prescribing Information including BOXED WARNING. For more information on ADCETRIS, 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.

Important Safety Information

What is the most important serious safety information I should know about ADCETRIS?

  • PROGRESSIVE MULTIFOCAL LEUKOENCEPHALOPATHY (PML): Patients treated with ADCETRIS can have a rare, serious brain infection called PML. It can cause death. Symptoms can begin at different times after starting ADCETRIS treatment, some within 3 months after the first dose. Call your doctor if you have mood changes, confusion, dizziness or loss of balance, trouble talking or walking, vision changes, or if you feel weak or have weakness on one side of the body. PML could also be caused by other treatments or diseases that made your immune system weaker.

What should I avoid when receiving ADCETRIS?

  • Do not take ADCETRIS with bleomycin because of possible serious side effects to the lungs.

What are the other possible serious side effects of ADCETRIS?

A serious side effect can be life-threatening or can lead to death. They may happen during treatment or after your treatment has ended.

Call your doctor right away if you have symptoms of a serious side effect or if your symptoms get worse. If you have a serious side effect, your doctor may delay or stop your ADCETRIS treatment.

  • Nerve damage (peripheral neuropathy) that is mostly numbness or tingling in the hands or feet (sensory) and/or weakness in the arms or legs (motor). The nerve damage can get worse with more doses of ADCETRIS. Call your doctor if you have tingling, burning, or numbness in your hands or feet, changes in your sense of touch, or trouble moving your hands or feet.
  • Allergic and infusion reactions during infusion or up to 24 hours after your ADCETRIS infusion. Call your doctor if you have fever, chills, rash, or breathing problems within 24 hours of your infusion.
  • Blood problems such as a low number of white blood cells with or without fever, a low number of platelets, or a low number of red blood cells.
  • Your doctor will do blood tests to check your blood cell levels during ADCETRIS treatment. If your levels are too low, your doctor may lower or delay your dose or stop your ADCETRIS treatment or give you a medicine called G-CSF. G-CSF is meant to prevent you from having a low number of white blood cells.
  • Infections such as pneumonia, bacteremia, and sepsis or septic shock can happen with ADCETRIS treatment. Call your doctor if you have a fever of 100.5°F or higher, chills, cough, or pain when you urinate.
  • Tumor lysis syndrome can happen if you have a tumor that grows quickly or have many tumor cells in your body.
  • Patients with severe kidney disease may have more side effects and deaths than patients with normal kidney function and should avoid treatment with ADCETRIS.
  • Patients with moderate or severe liver disease may have more side effects and deaths than patients with normal liver function and should avoid treatment with ADCETRIS.
  • Liver injury can happen after the first dose of ADCETRIS or after ADCETRIS treatment is stopped and started again. Call your doctor if you feel tired, do not feel like eating, have upper stomach pain, dark urine, or yellow skin and eyes (jaundice).
  • Lung problems. Call your doctor if you have a new cough, a cough that gets worse, or feel out of breath.
  • Skin problems called Stevens-Johnson syndrome and toxic epidermal necrolysis can happen. Call your doctor if you have rash, hives, sores in your mouth, or blistering or peeling skin.
  • Gastrointestinal (GI) problems related to the pancreas, stomach, intestine, and colon can happen. If you have lymphoma that involves your stomach or intestine, you could have a higher risk of a hole in your stomach or intestine (GI perforation). Call your doctor if you have severe stomach pain, chills, fever, nausea, vomiting, or diarrhea.
  • High blood sugar. Your doctor will test your blood during ADCETRIS treatment. If your blood sugar is high, your doctor may give you medicine to control it. Call your doctor if you need to urinate more often, are very thirsty, or have blurry vision.

What were the most common side effects in patients treated with ADCETRIS?

When used alone or together with chemotherapy, the most common side effects were:

  • nerve damage (peripheral neuropathy)
  • feeling tired
  • nausea
  • diarrhea
  • a low number of white blood cells
  • infection in 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 and/or in the digestive tract

Contact your doctor if you have any other side effects that bother you or do not go away.

What should I tell my doctor before I start treatment with ADCETRIS?

  • All your medical conditions, including if you have kidney, liver, or lung problems, an infection, or diabetes.
  • If you are pregnant or plan to become pregnant. ADCETRIS may harm your unborn baby. If you can get pregnant, you should have a pregnancy test before starting ADCETRIS treatment. You should use effective birth control (contraception) during ADCETRIS treatment and for at least 6 months after your last dose of ADCETRIS. Talk to your doctor about birth control methods. Tell your doctor right away if you become pregnant or think you are pregnant during ADCETRIS treatment. Men with female partners who can get pregnant should use effective birth control during ADCETRIS treatment and for 6 months after the last dose.
  • If you are breastfeeding or plan to breastfeed. Do not breastfeed during your ADCETRIS treatment.
  • All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. ADCETRIS and certain other medicines can affect each other.

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.

Indication

ADCETRIS (brentuximab vedotin) for injection 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)

Please see full Prescribing Information including BOXED WARNING.

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.

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1 American Cancer Society. Hodgkin Lymphoma Causes, Risk Factors, and Prevention. Available at https://www.cancer.org/content/dam/CRC/PDF/Public/8650.00.pdf. Accessed June 6, 2019.

2 American Cancer Society. What is Hodgkin Lymphoma? https://www.cancer.org/cancer/hodgkin-lymphoma/about/what-is-hodgkin-disease.html. Accessed June 6, 2019.

3 American Cancer Society. Key Statistics for Hodgkin Lymphoma. Available at https://www.cancer.org/CANCER/HODGKIN-LYMPHOMA/ABOUT/KEY-STATISTICS.HTML. Accessed June 6, 2019.

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4 Connors JM, et al. Brentuximab Vedotin with Chemotherapy for Stage III or IV Hodgkin’s Lymphoma. N Engl J Med 2018; 378:331-344.


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