Opdivo: My Experience

I am a member of many Facebook groups that involve lung cancer, cancer support, and bladder cancer. I have noticed in recent weeks, many of my co-members have posted that they are going to begin Opdivo. I felt it was about time I let you know about my experience.

My first two years my tumor remained stable

My lung cancer journey began 3 years and 9 months ago. The first two years I was on traditional chemotherapy. I experienced the typical side effects - nausea, vomiting, total hair loss, etc. It was not a fun time, as you all may already know. For the first two years, my tumors remained "stable."

However, in month 25 when I had my every three-month scans, we discovered growth.  My medical oncologist recommended immunotherapy. Cancer immunotherapy is the use of the immune system to treat cancer.

Starting a new regimen

In January of 2016, I started on Opdivo. I was told the infusions would last a total of about 2 hours and I had to go every two weeks. After two years of chemotherapy, I was extremely skeptical when the nurses said, "Oh it's nothing like chemo.  You'll love it."

So January 4, 2016, I arrived at the infusion center absolutely terrified. Would this new therapy work? Would I have serious side effects as I had for the past two years? So many questions. Now I was about to get the answers.

Upon arrival, my vital signs were taken, the nurses accessed my port and drew blood. With immunotherapy, blood tests are done either every two weeks or monthly. In the beginning, my tests were every two weeks (luckily now I am only once a month). Then the waiting. You just sit there and watch television for about 15 minutes while you wait for your results. Everything on my end was within normal limits.

So now, it's time. The saline bag was hung, then the Opdivo bag was added. Let me add at this point - the bag is about 4 inches tall and 2 inches wide. I believe it is 240 mL. That tiny bag costs $37,950 EVERY TIME.

The Opdivo infusion takes exactly one hour. Then I was released. So, driving home I felt great. Later that afternoon, I felt I needed a nap. I got extremely tired very easily that day. So I laid down.

Developing my new routine

Now, when I woke up, things changed. I felt like I was beginning to get the flu. I had body aches - my hair hurt, my joints hurt. No excruciating pain but just an ache. My stomach was fine. My gastrointestinal system was fine. I just had that achy feeling all over.

That feeling lasted three days. On day four, I woke up and felt absolutely fine again. This has continued for over 1 year and 9 months. I can plan out each week I have therapy knowing I'm useless until day four. Four days out of 14 feeling normal is terrific compared to chemo.

Now, I know every person is different and every person has different reactions to the same drug. I'd love to hear from others what their experience with Opdivo is.

I think it's the greatest thing since sliced bread. Every three months, I continue to have very small shrinkage in my tumors and that is the best news of all.

Editor’s Note: We are extremely saddened to say that on January 28, 2020, Jennifer Toth passed away. Jennifer was a passionate advocate for the Lung Cancer community. She will be deeply missed.