Weekly Update #58

What a week it has been. I have heard more about my options but ultimately I am still in the unknown.

I had my chemo teach for Lonsurf yesterday. That’s where you meet with a member of the team and talk about how to take the drug, side effects, how to deal with those side effects, any restrictions I need to follow, and possible interactions I need to avoid. I got to meet the team pharmacist who is fantastic. We also talked about chemo pumps, which I am kind of obsessed with after trying multiple kinds (team elastomeric pump over here). It sounds like it is pretty hard to predict when the side effects will hit, so I just have to start the drug and see how it goes. So inconvenient when my providers can’t predict the future.

The Lonsurf is currently waiting for me at the pharmacy. The pharmacist called me yesterday to let me know that the copay is $2K and ask if he could enroll me in a copay assistance program. Yep, that would be great, thanks. So I’m waiting for that to go through and then I’ll be able to pick it up and get started.

I also talked to my doctor about a trial option she is excited about. It has some exciting preliminary data and makes sense for my case. It’s a phase 2 trial which is my preference (it means I would be testing a new drug at the dose they believe to be most effective). Downside number 1 is that it involves a drug that I had to stop taking previously because I had a rare but terrible side effect – it made a hole in my colon. Apparently that doesn’t exclude me from the study and they say it is unlikely to happen again, so I will consider it with trepidation. Downside number 2 is that it is in Denver and would require me to fly there every 3 weeks to receive treatment. That’s a big expense, and sounds exhausting.

There is one other trial we are currently discussing. That one also has some promising initial data and in theory should be effective for my cancer. It is in Houston, which is drivable for me and home to many friends. For this trial downside 1 is that it is a phase 1 trial, which is where they are testing in humans for the first time to find the most effective dose. So I could be on an awesome drug but at too low a dose for it to be therapeutic, or I could be on a toxic dose and have awful consequences. The other downside is that currently there is no slot for me on this trial. I’m on their list and my doctor seems to believe one will open up, but it’s not certain. I have no idea how you compare these options or how to make this decision. I’m going to talk to my doctors about whether these are my best options and I should pick one, or if I could pass them both up and have something better pop up in the next few months.

I am having a hard time with all of this. I am not doing the self-care that would be most helpful – getting plenty of sleep, writing about my feelings, meditating. I don’t know how long to let myself wallow, and it is a self-perpetuating cycle, it makes you want to wallow more. My new chemo will definitely go better if I am taking good care of myself, maybe that will be enough to motivate me.

I do want to end on a positive note and share that I ran a half-marathon distance on Sunday! It was my last long training run and it was a tough one but I made it to the end. Big thanks to the house on my route that has a drinking fountain in their front yard – it allowed me to fill up my water bottle at a time when I really needed it. I’ll only be off my new chemo for 5 days before my race so I don’t know if I’ll have the energy that day, but I met my goal and I feel proud of myself for sticking to it.

2 thoughts on “Weekly Update #58

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s