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Showing posts from December, 2017

The Moment We've All Been Waiting For

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I got my drugs! I got my drugs! I got my drugs! My first dose of entrectinib Now let's hope they work.

Waiting...waiting...waiting...

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Well, my liver counts have been dropping, but they still aren't low enough to start the trial. Because of the holiday weekend, my next possible start day is December 26. The good news is that the counts have been dropping pretty dramatically, meaning this is almost certainly a reaction to withdrawing from my medicine, rather than something more sinister (liver failure, cancer progression, etc). I have been eating all sorts of liver-healthy foods (beets, watermelon, walnuts, lemon water), and the trial coordinator said to keep doing whatever I'm doing, because it's working! I'm really disappointed, and fearful that by December 26 I will have been off of cancer medicine for 18 days. I'm trying not to stress (ha ha ha) and enjoy the fact that for the first time in over 4 years I don't feel nauseated when I wake up. So that's a plus. That's my story for now. Happy holidays from our family to you and yours.  And if you are looking for me, I'll be the pers...

Here's your medicine - JUST KIDDING!

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Well, faithful reader, you may recall that I was supposed to start my clinical trial today. All the tests were run, all the "i"s dotted and "t"s crossed. I got up bright and early today and had my blood drawn, filled out a bunch of paperwork, met with the trial doctor, and got the run down on all the tests and appointments I will be having as part of the trial. (There are a lot.) The trial coordinator handed me a bag with a 30 day supply of my new magic medicine, and showed Jason and I to the waiting room. They would call us shortly to head back to the research area where I would take my first dose and then be observed throughout the day. A few minutes later she came back with a funny look on her face. "I need you to come with me. And I need to take that medicine back." I was dumbfounded. "What?!? Why?" It turns out my liver values had shot up, beyond the range that is acceptable for the trial. I was devastated. I had the pills in my hand! It cro...

I'm In!!!

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The past two weeks have consisted of a brain MRI, chest CT scan, countless tubes of blood drawn, urine test, EKG, extensive health history, bone scan, abdomen and pelvis CT, and an eye exam. After seemingly endless doctor's appointments and tests, I have officially been enrolled in the Entrectinib STARTRK-2 trial! My first dose will be on Monday, December 18. The day will begin with a blood draw, then I take my first dose, and then ... they watch me. I have to stay there and be observed for something like 6 hours. Throughout the day they will do more EKGs and blood draws to make sure I am doing okay. If all goes well, they will send me on my way with a month's worth of pills. This is my first clinical trial, and they certainly appear to be high maintenance! I am in day 5 of the wash out, where I drop my old treatment, Xalkori, and go through a kind of drug cleanse. Day 2 the body aches hit. When I woke up I wasn't sure what was wrong. At first I thought I must have slipped ...

Goodbye Xalkori My Old Friend

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Well, we have been waiting for the next sign of progression as the cue that it was time to switch drugs, and it looks like the time is now. After 4 years and 1 month on my super drug Xalkori, we are looking at moving on to something else. I had my regular 3-month checkups over the past few days, and the MRI showed 3 tiny new spots (two were so small that the radiologist missed them on their first pass), and there is possible growth (or maybe scarring? They say it is hard to tell) on previously treated spots. If you have been following this blog for a while, you may recall that I have had brain mets pop up on three separate occasions, and each time we treated them with SRS (sterotactic radiosurgery). October 2015 - Adventures in Brain Metastases May 2016 - Brain Surgery Light v2.0 February 2017 - The Best Bad News We decided that since it seems like this was becoming an ongoing issue, and that there are new drugs in trials that look really good and have brain protection, that it was tim...