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...

I am now 9 weeks post brain surgery on my cerebellum. And 1.5 weeks post targeted radiation to my cerebellum. And 4 weeks post-entry into my second clinical trial, the EAP for Lorlatinib, which we hope will control (dare we say shrink?) the metastases in my brain. Right now, we are in a very pleasant phase I am calling ... The Pause. I don�t have another doctor�s appointment until my MRI on December 17, so until that time I am going to assume that all of these treatments have done what they were supposed to do, that my new clinical trial med Lorlatinib is holding my cancer at bay, and all I have to deal with are some pesky side effects. I�ll take it. In the mean time, I am enjoying trying to get back to some basic level of fitness (brain surgery followed by radiation really knocked me down, and I find myself huffing and puffing just from walking fast). And enjoying movie nights with my kiddos, planning for the holidays, soaking up laughs at Pointless, complaining about my new diet*, ...

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 saw my surgeon on Monday and all systems are go for brain surgery on Thursday, October 4. I�m oscillating between being incredibly nervous and remarkably calm. Acute recovery will be anywhere from 2-5 days in the hospital, and he estimates 4-8 weeks of slowly rebuilding my strength. His calm demeanor is buoying my optimism; he kept saying this is straight forward and he doesn�t anticipate any problems. In the mean time, we have been trying to get everything ready at home, for the family, the kiddos, the business. I�ve been feeling a very literal need to get my house in order to prepare for this event. As a fairly behind-the-scenes person, I feel like most of what I do is make sure things keep moving smoothly - like a player in curling, rushing about sweeping a clear path for that granite stone to get where it needs to be. As the surgery nears and my to-do list gets shorter, the primary thing I need to do is hand over the reins to all the trusted members of my team. A strange and libe...

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 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...

PROFILES IN LUNG CANCER Lung Cancer Awareness Month 2015 Day 28: Dr. Alice Shaw "Alice is my super-hero." (From Linnea Olson's blog, Outliving Lung Cancer) Alice and I met under what then felt like sad circumstances. It was the spring of 2009 and I was several months into my snatched from the brink of death fairy tale; aka crizotinib. As far as I was concerned (and I still feel this way), my original oncologist Dr. Tom Lynch walked on water. However, I woke up one morning only to read in the Boston Globe that Tom was leaving MGH to become the head of Yale�s Smilow Cancer Center. I was devastated and sent him a quick message saying I felt like he�d broken up with me via email. In my head I was already thinking I�d have to move closer to New Haven as I viewed my continuing survival to be inextricably linked to Tom Lynch�as an oncologist he was always on the cutting edge, having tested me for an EMLK4-ALK translocation in June of 2008, long before most of the world had even ...

PROFILES IN LUNG CANCER Lung Cancer Awareness Month 2015 Day 26: Christian Nataline, survivor. "You understand that we�re all interconnected to each other and with the planet." (From Linnea Olson's blog "Outliving Lung Cancer.") I met Christian Nataline five years ago�we were guests of our mutual oncologist Dr. Shaw at a function where she was being honored. I was struck by how young Chris looked and learned that he�d been diagnosed just after turning thirty-one. He�d been married less than a year (to his amazing wife Karen) and was the father of an eight month old. Like me, he was also a mutant�ALK+ and stage IV. ...continue reading...

PROFILES IN LUNG CANCER Lung Cancer Awareness Month 2015 Day 17: Kim Ringen , Lung Cancer Survivor "Everyone kept blowing off my concerns as typical pregnancy symptoms." Twitter handle: @KimberlyRingen Who is Kim Ringen? Tell us a little bit about who you are, aside from cancer. Funny I can�t get away from cancer even in my former life�.I�m a veterinarian oncologist . I love being a veterinarian. I wanted to honor the human animal bond when picking a specialty - I chose oncology for 2 reasons. #1 I wanted to help further honor that bond by helping guide pet owners through what is considered one of the darkest days for their companions. #2 I find the intricate cellular backbone that drives cancer biology so intriguing from a science standpoint. This has been one of the hardest parts of my former life to let go� being a veterinarian is not just a job it becomes part of who you are..regardless if you are able to practice of not. I love skee ball. If I walk into a restaurant or...