lunhs cancer

Things are not great in CancerLand. My rising tumor markers and MRI changes have confirmed that the spot in my cerebellum has grown back and is starting to cause symptoms. The great/terrible/ironic thing is that I�m not facing widespread cancer progression; the only spot causing troubles is the same bugger in the cerebellum that we tried to remove back in October. My sense of equilibrium is off, and I was having headaches and nausea until we increased my steroids earlier this week. Now, some of the imbalance is likely caused by my trial drug - it is a frequently reported side effect - but certainly some is from the mass. Friends who knew me in my physical theatre / Dell�Arte days will find it strange that I now feel intimidated by a staircase lacking a rail. I reminisce about how I used to stand on someone�s shoulders without batting an eye. Flowers for Algernon�s Charlie comes to mind: I know I have done all sorts of physically challenging things in my life, but I cannot fathom them i...

Clearly this cancer likes to keep me on my toes. You may recall that I finally got some good news on my April brain scan, the first good news in a year or more. My May scan focused on my heart and bones. The heart looks just fine (yay!) but a spot appeared in my left shoulder blade. Just when you think you can breathe easy for a bit. It is a spot that was seen back in 2013, but that we thought was dead for all these years. I guess it wasn�t, or it is some sort of zombie cancer that is rearing its ugly head. And I thought the pains in my shoulder were a pulled muscle from all my travel and camping fun! The good news is that I can stay in the trial, and we are treating this spot like a single mutant clone and zapping it with targeted radiation. And I can do the radiation here in Michigan. All good things. So on Monday I start three every-other-days of radiation. Not my first rodeo, as the nurse said, though my first time where I have to be aware of possible skin damage. I�m going to assu...

The MRI was definitively stable, even slightly improved. Most of the spots have either gotten a little bit smaller (by about 1 mm - but I�ll take it!) and/or become less bright on the scan. I�m calling it �stable plus.� I was very pleasantly surprised by these results! Now I am only traveling to Colorado once a month. And that will feel like a breeze!

These past two months of treatment on my fancy new clinical trial drug have passed fairly uneventfully. Side effects here and there, plus massive amounts of travel, but all in all not too much to report. Mostly, I�ve just been trying to convince myself that everything must be fine, since I feel fairly decent. But now scan day, April 8th (our 13th wedding anniversary) keeps marching closer, and no matter how hard I dig in my heels and try to make the world stop turning, the calendar pages continue to flip. Time for me to step up and face the truth that the scan report reveals. The gravity of these upcoming scans reminds me of my August 2013 scans (on Jason�s birthday). Those were my first scans after starting chemo, and we knew that the report would largely foretell whether or not my cancer would respond to treatment. And the report was remarkable. But that was my first line of treatment. I am on my ... fifth (or maybe sixth?) line at this point. The odds of a good outcome go down with ...

And humbled. And stunned. And grateful. And relieved. I spent a big chunk of February scrambling to find a way to fund the wonderfully intense clinical trial that I am so thankful to be in. I have received some of the kindest rejections of my life, from organizations that truly want to help patients, but for various reasons were not able to help me. We were getting closer to March, and I hadn�t booked any of my March flights yet. I was starting to worry. So when my dear friend Lily (the same one who gifted me the  ruby slippers ) brought up the idea of doing a gofundme, I initially balked. I was sure I could find a foundation to cover the expense. But the days marched on, and still nothing. Finally, I gave her my blessing to start it. And HOLY MOLY! If you are curious to see what I�m taking about, you can check it out here . I am so moved by the response. What more can you really want from life than to love and be loved? To put some good out into the world? To have a life well live...

I successfully passed all the tests and got accepted into the study! There is a weird sweet spot you have to hit in order to qualify for a clinical trial. If you don't have enough cancer in your body, you will not qualify because you do not have "measurable disease." If  you have too much, you will be too unwell to be considered as a candidate. I hit the goldilocks level of cancer! Yay for having measurable disease?!? What a strange thing to wish for. I took the first dose on Thursday and now I just hope (and hope and hope) that it works. I got to see both of the Wizards on my trip to Oz (my ruby slippers were a hit), and as usual they impressed me with their intelligence and compassion. They both have the remarkable ability to treat a patient as an equal partner in their care, something I have rarely found elsewhere. I love that they take the time to explain the science behind the treatments. I asked what I could do if this doesn�t work, and he explained that a chemo/imm...

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...

I woke up last Wednesday to a phone call from my oncologist confirming that the MRI I had just had showed that, while it was slight, my brain mets are progressing. My fancy new TKI (tyrosine kinase inhibitor - a drug targeted to my ROS1 mutation), Lorlatinib, was not holding my cancer in check. The next best chance for me was to get into a trial for the newest TKI in development, TPX-0005 (it is actually far enough along now in development that it has its generic name, repotrectinib, but I fell in love with it when it was just TPX, so it will always be TPX to me). The nearest site for this trial is at the University of Colorado, a powerhouse for ROS1 research. My longtime readers may recall that back in 2014 I took a trip there, my journey to Oz to meet the Wizards so that I could learn more about my newfound mutation. With all of this on my mind, I got up and starting figuring out how to stay alive. Actually, that�s not true. The first thing I did was get back in bed and get under t...