Saturday, June 2, 2018

Yay for Coffee -- A One-Week Update

So, after a full week taking lorlatinib, I think I can say I'm tolerating the medication well. I can't tell how well it's working though, because I wasn't having any tumor symptoms before I started the protocol, so the only way we knew the cancer had progressed was because of what showed up on the scans. However, I can say that the side effects of the lorlatinib are much milder than those I had previously with crizotinib. For instance, food actually tastes good again, and I am not contending with daily morning nausea. And, hooray, that means I get to drink coffee again, a beverage I love and had to give up on crizotinib because it made me feel terribly ill. Yay for coffee!

I was warned that the medication could make me feel a bit spacey or giddy as it began to penetrate my brain, and I am, indeed noticing those things. I feel just a little bit
stoned all the time, but I don't consider that a problem 😉. I am taking it as a sign that the medicine is actually working on my brain and zapping those little fuckles! It does make it a bit hard to multitask sometimes, and I do lose my train of thought in conversation now and then, but, um, I think I struggled with those things before lorlatinib! Anyway, I'm in a really good mood most of the time!

Here are a few helpful ways to think about what is happening in my brain and body:

  • Lorlatinib as Pacman munching up the tumors as it runs around the mazes of my brain and lungs and lymphatic and circulatory systems
  • Lorlatinib as a Harry Potter expelliarmus spell, disarming the cancer of its deadly mutations
  • Lorlatinib as scrubbing bubbles
  • Lorlatinib as Divine gardener plucking out the tumors like so many weeds from my poorly-tended garden
Anyway, now we do watchful waiting. If I don't start to exhibit symptoms (slurred speech, vision problems, lack of coordination, language issues, breathing problems, adenopathy) between now and my next set of scans in July, we can hope the lorlatinib is working and tumors are shrinking or at least not growing. It's also possible that the lorlatinib is not really working, but the tumors are growing so slowly they are not yet causing symptoms. Any of those scenarios will be confirmed by scans: shrinkage, stability, or, ugh, progression. And of course, another possibility might be something good for which science cannot account and which those wiser than I would call a miracle. 


2 comments:

  1. You are a strong woman! Keep fightng! Love and positive vibes sent your way!

    ReplyDelete
  2. Thanks for sharing, my love. I am so glad you are doing well. And YAY for coffee indeed!

    ReplyDelete

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