Ch-ch-ch-changes, pt. 2

Part 1: The appointment details

Part 2: The plan

When I read the devastating news of progression, I cried a whole lot. Things were bound to change and I wasn’t happy about it. Could cancer be any more inconvenient or self centered? Didn’t cancer know that my family was living a dream and I didn’t have time or emotional energy to put towards management of this? Cancer is my family’s 5th wheel apparently, uninvited and unnecessary!

What’s the plan though? I am going to be starting a drug called Xeloda (Capecitabine). This is an oral chemo. The last drug I was on wasn’t a chemo, it was targeted therapy, so it worked directly inside the cancer cell itself and stopped a cascade of events from happening, which stopped cell division. Chemo on the other hand kills rapidly dividing cells, it doesn’t discriminate cancer cells from regular cells, which is why it’s not targeted therapy. I’m still doing my own research on the drug, but this chemo offers a better quality of life than IV chemo because of how it works in the cells.

The side effects will be similar to those of my last meds, but will come with a new one called hand foot syndrome, which is like extreme dry skin and sunburn on the palms of hands and feet. There is treatment for hand food syndrome, but getting the Xeloda dosing correct seems to be the best management of this side effect. We shall see. Until then, I need to slather loads of aquaphor on my hands and feet to help ward off this side effect for as long as possible. One silver lining of this chemo is that I won’t be losing my hair. Yay!

This course of treatment looks like two weeks on the oral meds (twice a day) and a week off. Three weeks to a cycle. Now because it’s a new to me medication and we don’t know how I am going to do on it, I’ll have to be back in Boston for a few days every three weeks. That’s a lot. Like twice as much as I was planning on being back for. My first visit back will also include a liver biopsy. This is because my doctor thinks that the cancer must have mutated to become resistant to the CDK4/6 drug I was on and thats why I had become symptomatic so rapidly. She wants to find out what we are dealing with, maybe find the mechanism of resistance or the mutation itself. So this trip back will likely be a long one again because I’ll need to plan for the biopsy and recovery in addition to my normal oncology appointments.

Right now, insurance is being tricky. I have been trying to remain patient with them, but today I’ll be making calls to find out what the hold up is on getting my meds. Being off treatment is scary and I just feel bad. My oncologist said that probably by cycle 2 I will start to feel some relief from my pain which would be awesome. I’d love to quit relying on acetaminophen and ibuprofen around the clock.

Now, Xeloda is a fairly old drug. It’s been on the market for a while and there is a generic available. It was being used often before CDK4/6 inhibitors were released. The success of CDK4/6 inhibitors sort of shadowed the success of Xeloda, so the body of research isn’t as abundant as the body of research for CDK4/6 inhibitors. That being said, many people have had success on Xeloda for months to a couple of years. I have hope that because I responded so well to abemaciclib (a CDK4/6 inhibitor) that I will also have a good response to Xeloda.

This is anecdotal, but most of the time I don’t see second or third and so on treatment lines working for patients longer than their first line. It can happen, but usually that first line of treatment sets the stage for how a patient will do going forward. I am hopeful this will carry me for a little while. I would love to get 12 months out of this drug. And then, when this one runs is course, because it will run its course, I would love to go on another trial if I am eligible. I really do feel like it’s what I can do to give back to the MBC community so that some day we can treat this disease like a chronic illness rather than a terminal disease.