Thursday, February 01, 2018


I was surprised and a little embarrassed to see that I have my every-other-week clinical trial checkup on Monday, meaning it has been almost two weeks since I had my first scans on this trial and I still haven’t written an update. Well, patient reader, in a nutshell my scans were good-ish. The lungs and body appear unchanged, and while there were no new spots on the brain, the New Guy (the brain met that was my ticket into the StarTrk-2 trial) looked mostly the same but a little bit rounder with some edema. Since we don’t know what happened during the agonizing 18 days that I was off all treatment, letting the cancer grow completely unfettered, the doc is calling it stable. And stable is good. The next scans will give us a better sense of how this drug will work on my cancer.

Guess when the next scans are - my birthday. I’m going to take that as a good omen.

I’m coping okay with the new drug, entrectinib. I had a whole laundry list of side effects to tell my trial doctor about: 

  • Sleep 12 hrs/night
  • Numb/tingling mouth 
  • Feel slightly off balance
  • Drugged feeling about 2 hours post dosage
  • Scatterbrained, lose train of thought when interrupted
  • Have to concentrate harder to follow conversations
  • Very sensitive skin, prickly, pins and needles feeling
  • Sometime struggle to find the right word

They designed this drug to get into the brain, and the side effects sure feel like it does!

The sensory stuff is either getting less or I am getting used to it. The main struggles now are the sleepiness (even after 12 hours of sleep!) and losing my train of thought if I get distracted. I’m developing coping mechanisms, like making lists, and using even more post-it notes than I did before so I have reminders everywhere. I am also teaching my children that they have to take turns when they want my attention instead of just all talking at once!

Do you see what is absent from the list of side effects? ANYTHING to do with GI issues!! I didn’t realize how miserable I was with my stomach issues on my old magic medicine Xalkori. I dreaded eating every day, and as a stay-at-home-mom, so much of my life centered around planning food, buying food, preparing food, and cleaning up food. We had more dinners of canned soup or takeout than I would like to admit, just because I couldn’t stand the look or smell of cooking food.

But now I LOVE TO EAT!! I look forward to eating! I love the smell of food! Food is wonderful!

Oh in other news, both of my daughters tested positive for Influenza A last week! We were totally floored when they were positive. They had some sniffles, a cough, and a slight fever and we took them in just because of me, since I am “high risk” and wanted to know what I was dealing with. I guess we were lucky that they got it so very mildly. I got to add Tamiflu to my drug cocktail which was a total blast. Thankfully I never caught the bug.

So, if you haven’t heard from me in a while, that’s what has been going on in my world. All in all, things are good