How Advocating for Myself Shaped My Experience with NSCLC

I recall clearly — like it was yesterday — the moment when my oncologist told me that my lung cancer had responded to treatment. I couldn’t have asked for better news.  

It was a far cry from the prognosis I was given when I was unexpectedly diagnosed with unresectable (inoperable) Stage III non-small cell lung cancer (NSCLC). I was told my odds of surviving for 5 years were about 20 percent. The news was devastating, especially because I lost my mom to lung cancer. But when a different doctor framed these stats differently — “Twenty percent, that’s about one out of six— that’s not bad, Ed,” that changed my outlook. Fighting cancer has been the hardest thing I have ever done, but having hope, perspective, the right doctors and the love and support of my family and friends has made all the difference. 

It all started after my 50th high school reunion. Shortness of breath and trembling — similar to symptoms my brother had during a heart attack — led me to the ER. I remember the nurse delivering the news that my chest X-ray showed something in my lungs and I would need a computed tomography (CT) scan.

Things moved quickly after that. The CT scan identified a four-centimeter growth in my upper right lung. I was told it was suggestive of cancer. These tests, in addition to my CT and other tests, confirmed my cancer was Stage III and unresectable. My family and I were stunned and scared — the prognosis felt so grim. Lung cancer is often associated with smoking, and it is certainly a major risk factor for NSCLC. I had no idea that non-smokers like me could come face-to-face with this diagnosis

I have always been a fighter. I knew that in order to fight this disease I needed the best team on my side. My gut told me to look for a hospital that was on the cutting edge and would help improve my odds. On my first visit to a local research hospital, I knew I had made the right decision. I was welcomed by a care team made up of different specialties — including a surgeon, radiologist and oncologist. They reassured me they would do everything they could and give me the best available treatment. 

With the support of my care team and my family, I started chemotherapy and radiation — also referred to as chemoradiotherapy (CRT). 

It was a stressful time. At one point, my hair fell out during treatment (a known side effect of the chemotherapy I was on), which was tough. But then my son shaved his head in solidarity and that was such an emotional boost. My wife, son, and daughter were my rock — they reminded me every step of the way: “You’ve got this. You’re going to be OK.” My care team was also amazing, they believed in a holistic approach and introduced me to an exercise program, so I focused on working out and eating healthy. I tried my best to stay positive. 

After completing a full course of CRT, my oncologist told me that I was a good candidate for an immunotherapy called IMFINZI^® (durvalumab). The treatment had completed a major clinical trial in people with unresectable (inoperable) Stage III NSCLC whose disease hadn’t progressed after CRT. After reviewing potential benefits and side effects, we agreed to start this therapy. 

IMFINZI is a prescription medicine used to treat adults with a type of lung cancer called non-small cell lung cancer (NSCLC). IMFINZI may be used when your NSCLC has not spread outside your chest, cannot be removed by surgery, and has responded or stabilized with initial treatment with chemotherapy that contains platinum, given at the same time as radiation therapy.

IMFINZI can cause your immune system to attack normal organs and tissues in your body and affect how they work.

Side effects can sometimes become severe or life-threatening and can lead to death. These problems can occur at the same time and at any time during or after treatment.

See your doctor right away if you experience cough, shortness of breath, chest pain, diarrhea or other stool changes, severe stomach pain or tenderness, severe nausea or vomiting, weight changes, increased hunger or thirst, constipation, dizziness or fainting, headaches, changes in urine, eye problems, irregular or rapid heartbeat, muscle pain or weakness, fever, rash, skin blistering, chills, itching or flushing, as this may keep these problems from becoming more serious.

Please see full Important Safety Information below and click here for full Prescribing Information, including Patient Information (Medication Guide) for IMFINZI.

I want others with unresectable Stage III NSCLC to know that they can fight it. Lean on your family and friends. My wife held my hand every step of the way, she cried with me, but we had faith that we would get through it. I can’t stress how important it is to advocate for yourself. If you aren’t comfortable with your doctor or care team, then find another team that will fight with you — that makes a world of difference. Finally, I always tell people, never give up hope.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about IMFINZI?

IMFINZI is a medicine that may treat certain cancers by working with your immune system. IMFINZI can cause your immune system to attack normal organs and tissues in any area of your body and can affect the way they work. These problems can sometimes become severe or life-threatening and can lead to death. You can have more than one of these problems at the same time. These problems may happen anytime during treatment or even after your treatment has ended. 

Call or see your healthcare provider right away if you develop any new or worsening signs or symptoms, including:

Lung problems: cough, shortness of breath, and chest pain

Intestinal problems: diarrhea (loose stools) or more frequent bowel movements than usual; stools that are black, tarry, sticky, or have blood or mucus; and severe stomach-area (abdomen) pain or tenderness

Liver problems: yellowing of your skin or the whites of your eyes, severe nausea or vomiting, pain on the right side of your stomach area (abdomen), dark urine (tea colored), and bleeding or bruising more easily than normal

Hormone gland problems: headaches that will not go away or unusual headaches; eye sensitivity to light; eye problems; rapid heartbeat; increase sweating; extreme tiredness; weight gain or weight loss; feeling more hungry or thirsty than usual; urinating more often than usual; hair loss; feeling cold; constipation; your voice gets deeper; dizziness or fainting; and changes in mood or behavior, such as decreased sex drive, irritability, or forgetfulness

Kidney problems: decrease in your amount of urine, blood in your urine, swelling of your ankles, and loss of appetite

Skin problems: rash; itching; skin blistering or peeling; painful sores or ulcers in mouth or nose, throat, or genital area; fever or flu-like symptoms; and swollen lymph nodes

Pancreas problems: pain in your upper stomach area (abdomen), severe nausea or vomiting, and loss of appetite

Problems can also happen in other organs and tissues. These are not all of the signs and symptoms of immune system problems that can happen with IMFINZI. Call or see your healthcare provider right away for any new or worsening signs or symptoms, which may include: Chest pain, irregular heartbeats, shortness of breath or swelling of ankles; confusion, sleepiness, memory problems, changes in mood or behavior, stiff neck, balance problems, tingling or numbness of the arms or legs; double vision, blurry vision, sensitivity to light, eye pain, changes in eye sight; persistent or severe muscle pain or weakness, muscle cramps; low red blood cells, and bruising

Infusion reactions that can sometimes be severe or life-threatening. Signs and symptoms of infusion reactions may include: chills or shaking, itching or rash, flushing, shortness of breath or wheezing, dizziness, feel like passing out, fever, and back or neck pain

Complications, including graft-versus-host disease (GVHD), in people who have received a bone marrow (stem cell) transplant that uses donor stem cells (allogeneic). These complications can be serious and can lead to death. These complications may happen if you underwent transplantation either before or after being treated with IMFINZI. Your healthcare provider will monitor you for these complications 

Getting medical treatment right away may help keep these problems from becoming more serious. Your healthcare provider will check you for these problems during your treatment with IMFINZI. Your healthcare provider may treat you with corticosteroid or hormone replacement medicines. Your healthcare provider may also need to delay or completely stop treatment with IMFINZI if you have severe side effects

Before you receive IMFINZI, tell your healthcare provider about all of your medical conditions, including if you:

●    have immune system problems such as Crohn’s disease, ulcerative colitis, or lupus
●    have received an organ transplant
●    have received or plan to receive a stem cell transplant that uses donor stem cells (allogeneic)
●    have received radiation treatment to your chest area
●    have a condition that affects your nervous system, such as myasthenia gravis or Guillain-Barré syndrome
●    are pregnant or plan to become pregnant. IMFINZI can harm your unborn baby
Females who are able to become pregnant

o    Your healthcare provider will give you a pregnancy test before you start treatment with IMFINZI.
o    You should use an effective method of birth control during your treatment and for 3 months after the last dose of IMFINZI. Talk to your healthcare provider about birth control methods that you can use during this time.
o    Tell your healthcare provider right away if you become pregnant or think you may be pregnant during treatment with IMFINZI.

●    are breastfeeding or plan to breastfeed. It is not known if IMFINZI passes into your breast milk. Do not breastfeed during treatment and for 3 months after the last dose of IMFINZI.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

What are the possible side effects of IMFINZI?

IMFINZI can cause serious side effects (see above):

The most common side effects of IMFINZI in people with unresectable Stage III NSCLC include cough, feeling tired, inflammation in the lungs, upper respiratory tract infections, shortness of breath, and rash.

Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of IMFINZI. Ask your healthcare provider or pharmacist for more information.

Call your doctor for medical advice about side effects. You may report side effects related to AstraZeneca products by clicking here. If you prefer to report these to the FDA, either visit www.FDA.gov/medwatch or call 1-800-FDA-1088.

What is IMFINZI?

IMFINZI is a prescription medicine used to treat adults with a type of lung cancer called non-small cell lung cancer (NSCLC). IMFINZI may be used when your NSCLC has not spread outside your chest, cannot be removed by surgery, and has responded or stabilized with initial treatment with chemotherapy that contains platinum, given at the same time as radiation therapy.

It is not known if IMFINZI is safe and effective in children.

Please see Full Prescribing Information including Medication Guide for IMFINZI.