Monday, March 11, 2019

Dancing with MONARCHs

There are many trials for breast cancer. In the past few years- awareness and research for metastatic breast cancer (breast cancer that travels and sets up shop in other body parts) has increased.

Most trials get a number and a catchy name- because well cancer is business and pharmaceutical companies know this. The benefit may be life saving.

As of last scans(PET/CT and brain MRI)- I have mixed results. Some spots are stable, some new spots and some old spots seem to be healed.  The most concerning spots are in my hips, spine and a new little spot in my brain. This meant the therapy I was on (Kadcyla) was no longer doing enough to keep my cancer quiet. Hence the dance. After the hip mets, pain and radiation- I added an aromatase inhibitor(AI) to the routine.

Sciencey part- skip on if you do not like. We have hormones. They do lots and lots of things. Mainly drive us insane in the form of teenagers. Certain hormones "feed" certain cancers. Some breast cancers are "fed" by estrogen and progesterone- normal hormones but very tasty to certain cancers. Breast cancers also can have a mutation in a human epidermal growth factor(HER2). The breast cancer treatment game changed big time with that discovery. So 3 things- ER(estrogen receptors) PR(progesterone receptors) and HER2 are commonly tested in breast cancers to determine most favorable dance partners. + meaning you have, - meaning you do not. In the world of breast cancer dance partner options- I have a great dance card +++, triple positive. This means aggressive cancers with quite a few options. Unfortunately what works is still and bit trial and error from person to person. Although these cancers don't always respond to hormonal therapies - directed at ER and PR- the mighty HER2 drugs are pretty effective, for a time. I've done 3 of these- herceptin, pertuzumab and kadcyla. Then I had my female plumbing removed to address the hormonal effects, then we added the aromatase inhibitor- which is supposed to help mop up any extra estrogen. And dealt with brain mets/tumor which is problematic because not so responsive to chemo.

So we dance. Scan- treat- scan- repeat. I've been doing this for 7 years. Cancer is tricky and wants to survive. It's wants and a human's wants do not predict survival. You can want til the cows come home- pray, beg, plead, cleanse- most of it is a crapshoot. And with many chemos- it is very much a literal crap shoot. We've addressed the her2 successfully- now it was time to address the other 2 +'s.

Many don't call these drugs chemo. Basically meds designed to step on Estrogen's toes- so it can't dance. Other meds are designed to stop the cell from growing at a certain point. Kinda like feeding your dance partner spiked punch and hoping their friend will drag them off the dance floor. The 2 meds I am now on are the result of a trial called Monarch. As in butterfly.


The Monarch butterfly has a lot of significance for many. It is a symbol of rebirth, life changes, transformation. We released butterflies at celebration of life ceremonies, seen them released at others, and I am always on the lookout for one to cross my path- a sign. I tend to agonize over treatment decisions. I'll admit, I am tired. My team has invested a lot in keeping me around under my terms, they've earned some trust. So when my onc recommended Faslodex and Abemaciclib- I took the paperwork home- set it aside and tried not to think about the 90 some percent chance of raging diarrhea- low blood counts, aches and pains and painful shots. I took Kiera and we found a prom dress- She's going with a friend we've known since they were babies.  I went to Lil's Newsies production and last minute shopping with Bella- with ironing lessons. I finished up scrapbooks. Was completely unmotivated to clean- read several books. Started making leis for graduation. Talked with friends on the phone. napped. a lot. Busied myself with helping friends.  Cried a freaking bunch. The night before my appt to get the new meds and shots- I looked up the meds. Because I could still say no. I had never heard of Abemaciclib, until I saw it's trade name- Verzenio- the mad pooper med. But in combination with Faslodex- they were effective prolonging survival and time to progression in the trial called Monarch 2.

I've been struggling. Facebook depresses me, my kids are all teens and although funny- they are exhausting. This year I turn 43. Kiera graduates. These are two big events I have been working towards. "working" being taking chemo when I really really don't want to. Going up and down stairs like a person twice my age, losing feeling in my fingers, dealing with pain and exhaustion, all the time. 43 was the age my dad died. It's a new level in the dead zone. 25 years ago this May, I sat in the lobby of a funeral home downtown Denver as my mom planned his funeral. The name of the home: Monarch.

So I dance, with Monarchs. I adjust to this change and transformation- letting go again of what was, what might have been and be grateful for what is.

No comments:

Post a Comment

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)