An End. And a Beginning.

Last week was both the anniversary of when I started my chemotherapy and Trastuzumab (AKA Herceptin or Kanjinti) and it was my final Trastuzumab maintenance infusion. There were a lot of emotions last week. In addition to the fact that I had a super busy week at work where I MC’ed an event of 200+ people for 3 days!

A lot of people offer me high-fives or congratulations and the occasion definitely warrants that for sure. Many think of it as a wonderful opportunity to be “done” or “through it.” There’s no guarantees in life and this treatment definitely does not come with a guarantee no matter how much I wish that it did. It would be easier to be super excited if I knew I was truly finished. When you graduate from college, you are actually done. You no longer need to pay tuition, you will not be enrolled in classes and there will be no more final exams. The chapter officially and certainly finishes. I wish with all of my being that this is the end and that I am now “done” with breast cancer. But it is kind of like you graduated from college, but then you have to keep coming back just to make sure you didn’t forget anything that you learned with little mini-tests. Even if I never experience a recurrence, breast cancer will still follow me with continued and more frequent scans.

This journey is definitely not over. I have only completed a major milestone. Hopefully I will complete many smaller milestones with each year that passes with clean scans. While I am truly thankful to no longer have to get these infusions – I’m pretty sure Trastuzumab is wreaking havoc on my nails – it also feels like having the training wheels removed from my bike. So not only do I feel like I’m not completely done, but I feel scared to top it off. I won’t see my nurses and oncologist every three weeks. While that probably doesn’t do much for me in reality, it feels reassuring.

I am happy though, too. I have a 94% chance of being alive 15 years from now! Woohoo! Without this, I still would only have a 97% chance – that sounds kind of freaky in its own way. But as I already said, there are no guarantees in life! I’m happy and relieved to have all of my active treatment behind me. It still feels surreal sometimes when I stop and realize “Woah – I had cancer!” I’m not sure it will ever feel totally real. As I said – lots of emotions!

Sean came with my to my final infusion and to my final oncology treatment check-in. He always finds my doctors appointments to be silly mostly because I’m ridiculous. I am far too chatty with all of my doctors telling them things they probably weren’t really asking me about. For example, my doctor asked me how my energy level was and I told him that I’ve gotten back to riding 5 to 6 times a week and that I’ve even incorporated a 4-day weight lifting upper/lower split! In fairness, he did ask me if I was back to riding a hundred miles a week (almost!).

We also chatted about a drug called Neratinib, sold under the name Nerlynx. Drugs that end in “ib” are small-molecule InhiBitors. Generally, they have to be very small because they inhibit something that is going on inside the cell. Trastuzumab ends in “mab” because it is a Monoclonal AntiBody and it acts on the receptors on the outside of a cell. Neratinib is called a tyrosine kinase inhibitor. In a very simplified description, Tyrosine kinases are enzymes (proteins that trigger reactions) inside the cell that can act as an “on” or “off” switch in a cell by activating other proteins inside the cell. Neratinib specifically works by binding with HER2 and epidermal growth factor receptor kinases and inhibits them from working. It has been found to be effective for women who have triple positive breast cancer (HER2 positive and hormone receptor positive).

My oncologist told me that because I was only slightly Estrogen/Progesterone receptor positive, my tumor was really small and I was node-negative, he and probably no other oncologist would recommend taking Neratinib. It does cause really horrible diarrhea and you have to take it for a year. It’s an oral medication, so at least you don’t need to come in for infusions. For my specific case, it seems Neratinib would only provide a long-term benefit of about 1%, which isn’t worth it for the cost and the side effects. Again, the recommendation would probably be different if I had node-positive disease or if my tumor had been larger. The latest update from the big study that performed longer-term efficacy of the drug, the long-term survival benefit seems to diminish over time where the control group (placebo) and the neratinib arm of the study almost come back together. So it’s not like it is some type of miracle drug either.

When one door closes, another one opens. I feel like I have now officially transitioned into full “survivorship.” Now I need to go on living my life like this is all behind me or at least the parts that can bring me down. I do plan to focus on breast cancer advocacy and cancer advocacy in general. There are so many topics that are interesting and there are a lot of ways in which I think I could make a difference in someone’s life. I hope that I will have the chance to do that. As I know I’ve said many times before, I want to do whatever I can to make sure that Maddie’s future is different. That even if cancer is still around, we have found ways to make it a manageable, non-lethal disease.

I have a bunch of blog posts that I’ve written, but I haven’t published because I keep working on and massaging them. I will probably just bite the bullet and start publishing them. There are so many cool things out there that are going on in research right now! Biotech is an exploding field and we have made so many huge advances in the last 10 years that have made studying certain things easier or feasible. We need to stay invested in pushing this science forward because it could have a huge impact on so many people!