Why I’m taking Verzenio as an early stage breast cancer survivor
There has been an incredible leap forward for the treatment of early stage breast cancer that is HR+/HER2-, the most common kind of breast cancer. I was diagnosed with this type of cancer at Stage 2A in October of 2020, and am immensely grateful to be cancer-free today after a bilateral mastectomy, chemotherapy, radiation, and now long-term hormone therapy. My doctors and I are always looking for ways to further science and keep me cancer-free.
A new medication
A few months ago, my oncologist mentioned that a drug called abemaciclib [brand name: Verzenio] may become an option as an additional medication to further reduce my chance of recurrence. It is a class of drug known as a CDK (Cyclin dependent kinase) 4/6 inhibitors. It inhibits kinase activity, blocking a key protein pathway that would otherwise support hormone signals to foster cancer cell growth. The short of it: block this pathway, and the cancer cells die.
Verzenio has been a successful treatment for advanced and metastatic cases to prolong life, and over the past few years researchers have been testing it for early stage survivors to prevent recurrence. Cancer treatment can seem never-ending. There are a myriad of decisions to make at every step. Just when you think you’re done making decisions, another pops up.
My initial answer was “NO”
At the time, I was healing from pneumonitis (lung inflammation) caused by a severe and life-threatening allergy I have to Taxol (a common chemotherapy drug). If you’re interested in that crazy part of my survival story, you can read about it here. Pneumonitis is also a very rare side effect of Verzenio so I didn’t even want to broach the topic unless we had data that showed Verzenio was effective for people like me who are early stage breast cancer survivors. The clinical evidence was due in early 2022, and we agreed to talk more about it once we had the data.
My second answer was “no”
Still, I was skittish to try this medication for a number of reasons:
My current side effects are finally under control
I have finally gotten the side effects of my current medications (hot flashes and joint pain) under control and this is another medication that we would add to my regimen with a whole new list of potential side effects.
My existing medical allergy
And there’s that pesky little pneumonitis risk with Verzenio which is absolutely terrifying to me.
Other side effects
Other common side effects for Verzenio are digestive system upset, low white blood cell count, and an elevation of liver levels, all systems and organs that I need to stay healthy.
Why I reconsidered
Now that we have the data in-hand and the first clinical trial shows it to be effective for early stage survivors, it was time to make my decision. I felt depressed and angry when reconsidering this medication. I just want to move on with my life and put cancer behind me.
Keeping cancer where it belongs — in my past
The truth is that cancer is in my rearview mirror, and we want to make sure it stays there. To do that, sometimes that means adding another medication.
The gift of medication
I’m fortunate that I had a kind of cancer that is treatable and curable. I know a lot of people who would love nothing more than to have a medication they could take that would stave off recurrence. In a crap world of cancer, having this medication is a true gift.
Side effects are gradual
Unlike the side effects of chemotherapy, the side effects of Verzenio are gradual and can be quickly stopped. Chemo is given through an IV and in enormous quantities. When you have an allergy like I did to Taxol, stopping its progression is often very difficult. With a drug like Verzenio that is a pill that goes through your digestive system, the side effects are gradual. At the first sign of them, I can stop taking it and we can quickly get my system under control again before we decide to continue to discontinue use altogether.
I didn’t finish traditional chemo
Because of my Taxol allergy, I couldn’t have my last 3 chemotherapy treatments. The remaining Taxol treatments likely wouldn’t have been that helpful to me given that I’d already had 5 rounds of chemo, my cancer was localized, and I had no evidence of disease after my surgery. (In some cases, people who have Stage 2A breast cancer don’t have any chemo at all.) Still, there is a tiny voice in the back of my mind that has always worried about not being able to complete chemo. A drug like Verzenio could replace that worry with confidence, and possibly an even better therapy than Taxol, knowing I’d done everything possible to prevent recurrence.
Furthering science is a service to other survivors
By taking Verzenio and agreeing to have my case tracked, I would be helping thousands, maybe even millions, of other people who will benefit from it in the future. If we want cancer to become a treatable condition rather than the terrifying diagnosis that it is now, then medication is the way to make that happen. To have those medications, we need people to participate in the science that tests them.
Verzenio is a short-term treatment (at the moment)
Right now, early stage breast cancer survivors take Verzenio for ~two years (given current data) and only if it’s tolerated well. If I have a horrible reaction to it, I will stop taking it.
Close monitoring
My doctor committed to very close tracking of my blood work and mitigation strategies if any side effects do arise. I had a different oncologist when I discovered my Taxol allergy. She ignored my side effects. When I told her about my horrible cough that kept me awake and trouble breathing, she told me to “drink warm milk and take a nap” because “this is just how it goes with chemo.” Her ignorance (arrogance) caused me to be hospitalized twice. My current oncologist would never ignore my side effects, and I will never allow a doctor to be dismissive of my experience, ever.
Funding
Verzenio often costs thousands of dollars a month. I’m fortunate that my insurance decided to cover some of the cost and the medical center got a grant to pick up the rest of the cost so it’s no charge to me and will be delivered to my door. Access to high-quality care matters, and it’s something everyone should have. This access to high-quality care is becoming a personal mission of mine.
The bottom-line reason of why I’m starting Verzenio
After much deliberation, I decided to go for it and here’s why: if I have a recurrence in the future, and I don’t do everything possible to prevent it, I don’t think I could forgive myself. I’d always wonder if taking Verzenio would have saved me from going through this ever again.
The reframe
Truthfully, I’m not a perfect candidate for this drug. Unlike the survivors in the clinical trial, all of my axillary lymph nodes (the ones under both my arms) were (thankfully) negative so my cancer was localized. A biomarker known as Ki-67 is used as one measure to determine the aggressiveness of cancer cells. On one side, my Ki-67 score was 15. On the other side, my Ki-67 score was 20. In the trials for Verzenio, survivors had a bare minimum Ki-67 score of 20, and many had much higher scores. Because of my extensive and aggressive treatments, coupled with my optimistic prognosis, I have a low chance of recurrence. By every measure, I am a border case for this medication, and that’s a great thing. If it’s shown such good results for those who had much more advanced cases than I did, I reason that I will also greatly benefit from it.
What I’m learning is that in healthcare and disease management, there’s no one right answer. There’s only the right answer for you, and the only one who knows that answer is you. You get as much information as you can, you ask as many questions as you can think of, you sit with the information, and you decide to do the next right thing. And for me, that’s Verzenio. So here we go — onto the next leg in the journey.
Bringing it all together
This was not an easy decision for me, and honestly I’m still nervous about it. As my therapist said when I was first diagnosed, when something scares us, the only way to banish the fear is to run right towards it and tell the story of what happened when we faced up to our fears. That’s what I’m doing now, and what I’ll keep doing.
I decided to write publicly about my experience with Verzenio because I couldn’t find a single personal account online of how someone managed on this drug and which mitigation strategies worked for side effects. If this medication is going to become a new standard of care, then we need to be more than just statistics in a faceless, nameless research study. We’re human beings, with full lives, emotions, and experiences. The medical community would do well to remember that from their side of the desk.
I also want to be a resource to others who make this decision. Obviously, I’m an open book when it comes to my cancer case. I’m here, and I will continue to be here for many healthy and happy decades to come. I look forward to our conversations and future scientific breakthroughs.