After my diagnosis of stage IV melanoma in early October 2017, my oncologist and cancer team immediately put me on the immunotherapy combination of Yervoy (Ipilimumab) and Opdivo (Nivolumab). This combo, which would be given in 4 infusions from October 25th to December 27th — and the subsequent 33 Opdivo infusions till April 2019 — have given me life till this day.
Before this combo infusion began, the tumors in my body had already metastasized to around 25 locations, including innumerable brain mets. Yervoy and Opdivo was an all or nothing treatment for me. It was really the only option on the table for me besides hospice and ultimately an untimely death. I was just too riddled with tumors for any other intervention to save my life. My stage of cancer and the numerable locations of metastasis placed me into what is called unresectable melanoma, which is a stage of cancer where the tumors cannot be surgically removed. It is considered the worst stage for obvious reasons.
While I did experience some grade 1 or 2 adverse events (AEs) with the combo treatments over the three month period they were given in late 2017, it was quite shocking to all of us just how quickly this immunotherapy would go to work inside my body. My cancer was quickly being eradicated. The MRI and CT scans over the next three to four months afterwards showed nearly all of the tumors within my abdomen (intestines), pancreas, lungs, bone, and brain shrinking by 40 to 50% or more. This is typically not the response most patients experience from immunotherapies. I was in a small percentile of patients oncologists called “complete” or “full” responders. One radiation oncologist I met with and several other doctors I’ve seen to date have called me a “poster child for immunotherapy.” With this title I cannot help but to feel an unmeasurable sense of appreciation and thanks.
There is not a day I wake up that I don’t ask myself how and why I was spared and so many others were not who have had this dreadful cancer. I was among the few lucky or blessed individuals who may actually be able to beat this cancer. There is an incredible hope with these types of immunotherapy treatments and new advances in this area of cancer treatment, including combatting resistance to immunotherapy that many patients experience.
Fast forward to almost eighteen months later and nearly every scan I’ve had since starting immunotherapy has been a positive one. There have been small setbacks. But overall, and with the help of so many family, friends, and the Lord above, I feel ahead of the eight ball. I try to understand each day why or how I have responded so well. What I’ve come to realize is that my genetics, their pathways, and genetic tumor aberrations may have played a huge roll in my tumors metastasizing in the first place and, ironically, how well immunotherapy worked for me. I will post more on what I’ve learned about the genetics of my melanoma in a later post.
What is immunotherapy and how does it work?
Most immunotherapies, like Opdivo and Yervoy, activate your immune system to find and attack the cancer cells in your body. These “checkpoints,” as they are called, increase your body’s immune response. Opdivo is an anti-PD-1 drug, or antibody, that promotes your own body’s T-cells (white blood cells) to attack the cancer. It effectively ramps up the tumor-killing effects of your own body’s T-cells. Yervoy is an anti-CTLA-4 antibody that strengthens the immune system by promoting the function or growth of T-cells.
Melanoma and other cancers can remain undetected in the body by masking themselves as normal cells. Yervoy and Opdivo target or block certain “checkpoints” between the tumors and T-cells, which increases the body’s immune response so that white blood cells can then attack the cancer cells. Opdivo blocks the PD-1 checkpoints that help protect tumors from being attacked. It essentially removes the PD-1 “shield” to allow your immune system to attack melanoma cells. Immunotherapy is a pretty amazing advance for cancer treatments. This short video can explain much better than I can do it justice:
It’s worth noting that immunotherapy comes with substantial risks, just as chemotherapy and radiation do. I have read many accounts of patients on Ipilimumab, Nivolumab, and other immunotherapies who have had their immune system attack their thyroid or liver. Or, they develop a multitude of other health issues that can range from severe GI issues like colitis to very severe joint, skin, or other immune reactions that can cause their immunotherapy treatments to be stopped.
UPDATE – 05/02/19: I have just learned that I now have immuno-triggered pancreatitis since my last treatment in late April. So, I am off of treatment for at least a month, maybe longer depending on my lipase numbers. They were elevated to about 1800 on my last blood test. I am not currently on steroids to combat it and I’m trying to eat really well to allow my pancreas to heal on its own. Besides this new “itis” I seem to be holding steady with a bit of fatigue, spotty bumps mainly on my torso and arms, and some blurred vision. To me, this is a small price to pay for being a responder to immunotherapy. And, maybe it’s time I took a short break from treatments to allow my body a break.
Stay strong warriors!
