lunhs cancer

When I was first diagnosed with metastatic lung cancer in 2013, the situation was dire. Cancer has spread extensively throughout my body. The only option offered to me for treatment was chemotherapy, a triplet of chemicals which had a 1/3 chance of reducing the cancer, and a 1/3 chance of holding it stable. The last 1/3 was left up to my imagination. Even with treatment, they expected I had about 8 months to live. Thankfully, fortune smiled upon me and we discovered that my cancer was driven by a ROS1 mutation. This meant that we had a whole new line of attack: we could try to stop the cancer right at the source. Since November of 2013 I have been taking daily pills that target my ROS1 mutation: Xalkori for 4 years (which worked like a charm, except for a few pesky brain mets, the known weakness of Xalkori). Next were the 11 bumpy months on entrectinib, where slight changes in the brain mets left my doctors scratching their heads after each MRI. Progression vs radiation necrosis, so ha...

The good news is that my brain surgery recovery is coming along really well. I�ve even been approved to start driving again, so Jason is taking me out for some driving practice this weekend. However, life with metastatic lung cancer continues to keep me on my toes. I�ve been in seemingly endless doctor appointments, and the plan now is to do targeted radiation to the area surrounding what was removed from my cerebellum. I am also moving to a new targeted medicine, Lorlatinib. Hence, the endless doctor appointments. I had my penultimate appointment for the Entrectinib trial, and I am currently going through the washout period in preparation for the Expanded Access Protocol trial for Lorlatinib. As you may recall from my Crizotinib washout, the withdrawal from these powerful meds is remarkably painful. Every muscle in my body is aching, even muscles I didn�t know I had. On Monday I have the radiation planning appointment. There will be 5 radiation sessions, every other day, beginning the...

I made it home Saturday afternoon and am now slowly rebuilding my strength surrounded by my beloved family. The surgery went well and without complications. We won�t know for sure until we get the pathology report but the surgeon said the feel of the tumor led him to believe there is still live cancer in the section he removed, rather than all necrosis. So that�s a bummer, and may mean more targeted radiation to the area left behind. But we will cross that bridge when we come to it. This was one of the scarier hills I have tackled over my 5+ years with metastatic cancer. There is an awful calculus that patients go through, deciding what we would be willing to give up for more time on earth. What deficits will we accept for more days? What makes life worth living? What risks will we accept for the hope of another year? The amazing Jason stayed by my side at the hospital, sleeping (or attempting to sleep) in a non-reclining chair, which frankly doesn�t seem possible at all. But I dearly ...

I got the results from my every-8-week scans for the clinical trial, and the overall reaction is ... meh. Things are not getting better, but they also are not getting significantly worse, at least not enough to kick me out of the trial. Which, in and of itself, is a good thing when dealing with metastatic cancer. "Not much worse" is good enough for a while. So, I will try to string together another few months (hopefully more!) giving researchers more time, and trying to hang in there until some exciting new trials are back into action (I'm looking at you, TPX-0005 !). Crossing our fingers that we are not burying our heads in the sand and missing progression in our optimism. ----- In other news, we had a wonderful trip to Minnesota visiting family and celebrating my parents' 50th wedding anniversary! The road trip there and back, the family party, meeting up with old friends, seeing friends get married, leisurely hours playing cards and working on puzzles, helping my m...

Thankfully my scans were much less of a roller coaster this time around. The consensus was that the brain mets are probably stable, so I can stay on the trial drug. Not quite as nice as a glowing report, but good enough. I'll take it, and I greatly appreciate that there was no drama. Boring is just fine, thank you very much. As the trial doc said, let's just try to keep stringing together months at a time until we hopefully get to a year. I know that's the drill for this metastatic life; just keep kicking the can down the road, going one step at a time, and before you know it (and if you are immensely lucky) you realize 5 years is just around the corner. So let's just keep kicking!

I don't even know where to start. The past 4 days have been completely absurd. As of Monday morning, I was out of the clinical trial because of progression in the brain, according to the MRI. The lovely ROS1 experts that I emailed asked me (repeatedly) to make sure this was definitely progression, and not a response to previous SRS treatment. I asked this question several times, but was repeatedly reassured that it was, in fact, progression. You may recall from my last post that I reached out to my rad onc to confirm that this was progression, as he was the person who has followed my brain MRIs very closely over the past 3 years and has performed all the SRS. He said he would ASAP, but was travelling and wouldn't be able to until Tuesday.   I was sent home Monday afternoon without a plan, but an appointment with my old oncologist on Tuesday (which I had to insist on getting, rather than waiting several weeks for her next available appointment).   I spend Monday afternoon reach...

I started off my birthday this morning in the most bad-a$$ way possible - by getting kicked out of my clinical trial. Yes, that�s right, early this morning, as I waited to get my blood drawn, my MRI results were released to my Patient Portal, and with a pleasant little �ding� I discovered that my fancy new drug has not been living up to the hype, and the cancer has progressed in my brain. I�m still kinda hazy on the details, as the report was uncharacteristically vague; no actual measurements or anything, almost a poetic take on MRI reading. But, nonetheless, I am kicked off the trial, the remaining pills were confiscated, and I was sent on my way. No plan, just set adrift. I have an appointment with my old oncologist tomorrow; they initially said her next available appointment was in APRIL, so I used my bad-a$$ Birthday Powers and helped them find one much sooner. I sent some bad-a$$ emails to some wonderful ROS1 experts, who sent lighting fast replies (before I even got called in to ...

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:...

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

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...