Didn’t see this coming

When I first started my combo of binimetinib and lorlatinib, I was referred to a retinal specialist, as MEK inhibitors can cause retinal problems. My exam showed some very mild retinal changes.

I had a routine follow up appointment today and I now have blisters on both retinas; yet considered mild retinopathy but concerning enough that I am off binimetinib and advised to go to the emergency room if I experience any visual changes.

I asked the retinal specialist why MEK inhibitors have this potential side effect and she said they felt it was an auto immune response. Well, I’ve got split fingertips, pustular acne, mouth sores, slowed speech, cloudy thinking, and some pretty troublesome neuropathy in addition to my current eye issues. Not to mention high cholesterol, elevated creatinine and low iron. Why can’t killing cancer be easier?

This is a tough spot to be in. I know that binimetinib and lorlatinib have shown efficacy against my cancer. But it is highly possible that the combined toxicity shall ultimately prove intolerable.

This is a good time to remind my audience that this is the explicit purpose of phase one trials: evaluating toxicity and establishing maximum tolerable dose. The actual experience can be as brutal as it sounds.

I have scans tomorrow, review on Monday. And I am certain a discussion as to how to proceed shall ensue.

6 responses to “Didn’t see this coming

  1. Marla A Celeri

    It’s all risk vs benefit isn’t it? I’m starting to get side effects from Opdivo and that’s a decision I think I’ll have to make sooner than later. Good luck, we are all in this together!

    • Marla, it is. Protocol made the decision for me this time. Not sure what the future shall bring. Good luck to you!


  2. Hang in there, Linnea! Will be thinking of you! So many challenges.

  3. Your strength never ceases to amaze me Linnea. Never forget I and numerous others are here for you in whatever way is needed❤️✊🏽

  4. Thank you , thank you, thank you. If it wasn’t for brave people like you I wouldn’t have lived so long. Sending an enormous amount of Love.💕

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 )

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