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 ...

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...

Jason and I got married in a perfect, tiny ceremony on the beach in San Clemente, California, then honeymooned in nearby San Diego. On each anniversary, we show our kids the wedding video, and every year they ask if they could see where we got married. Our little crew has never been on a family vacation. Yes, we road trip to Minnesota every summer to see my parents, and while I find that wonderfully relaxing, it�s not really a family vacation. There is an improv festival coming up in San Diego, and the League of Pointless Improvisers (the Pointless cast) got accepted to perform in it. ...do you see where I am going with this? These past few months have been rough. Frankly, these past 5.5 years have been hard, but the last few months have been particularly challenging. And the road forward remains unclear. So we decided, come hell or high water, we are going to California! Jason pointed out to me that Disneyland and LEGOLAND are in California, too. I�m well aware what a challenging time...

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 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 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...

So here we are. Five years. When I was diagnosed with metastatic lung cancer, the statistics said that my chances of living to see this day were less than 1%. This is a sobering anniversary; I can�t help but think of all my friends who ran out of time. People who seemed to be managing treatment so well and then .... well, we know how fast the snake can turn. Why have I been so freakishly lucky in this horribly unlucky disease? I took a stroll down memory lane to see how I wrote about this day over the past 5 years. Four . How Much Do You Want To Know About Your Cancer? (third anniversary) Cancer as Rebirth (second anniversary) That Time of Year (first anniversary) The Plural of Apocalypse (diagnosis) And when we found out it was metastatic and incurable:  The Time is Now A cancer diagnosis inevitably leads to talk of a �bucket list.� I thought about this quite a bit when first diagnosed, but there wasn�t a whole lot that I hadn�t already done. I had been fortunate enough to tra...

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 ...

Four years ago today I was diagnosed with lung cancer. We wouldn't find our for several days just how bad it was. This time four years ago I was still under the false impression that the cancer was contained in my left lung, that I would be facing chemo and the removal of my lung. That we would be aiming for a cure. We wouldn't know for several days that it had spread to the other lung, to my spine, my hip, my shoulder blade, my ribs, and my liver. We didn't know yet that the cancer was incurable. We hadn't yet thought of the word "terminal." The statistics for Stage IV lung cancer are sobering. According to the American Cancer Society, the 5 year survival rate for metastatic lung cancer is 1%. The Lung Cancer Association cites more optimistic figures at 4%. We had a big, heartbreaking loss in the lung cancer community yesterday. The red headed unicorn, the force of nature, the woman who inspired so many of us, Kim Ringen died yesterday, just a few days short...

Having been through the halo version of SRS (stereotactic radiosurgery) and the fancy new frameless "Edge" technology, I definitely prefer the latter. This time, they didn't need to numb my head (which didn't regain full sensation for about 3 months), or puncture four spots around my head to anchor the frame (leaving bruising and swelling, plus paralyzing one eyebrow for about a month).  Instead, I was fitted with this snug little mask which they clamped into the machine. There were also cameras around the room which projected motion-sensor beams, similar to the kind you see in spy movies. If I moved more that 0.5 mm, the beams would break and the treatment would stop. This is how they are able to target a brain met that is only 5mm while causing minimal damage to the surrounding brain tissue. Amazing. The whole thing only took around an hour, which included getting into the machine, the treatment, and a quick check in with my doctor afterward.  The mask was much les...

Well, another little bugger showed up on my MRI. The good news is that it's small (5mm) and we caught it early so SRS ( stereotactic radiosurgery ) is a great option again. Also, the Xalkori is still working great on the rest of my body - I've been on it for 2.5 years, which is pretty remarkable. I go in tomorrow for the planning session. The other upside is that the cancer center has a brand-spankin'-new machine which does NOT use the Frankensteinesque drills-into-your-skull frame. I'll get a better look at the fancy new tech tomorrow. What a surreal thing this stage IV life is. So, I'm back on the SRS train. Just hope it keeps on chugging along for a long time.

This weekend I celebrated a day I never expected to see � my fortieth birthday! It has been almost three years since that awful day when I found out that I had lung cancer that had spread throughout my body. In those days, I was so very sick and weak that I couldn't imagine living for another six months, let alone entering my 40s. I decided it was a milestone I needed to celebrate BIG, but I also wanted to give something back to the community that has supported me and quite literally kept me alive this far. I decided to have an improv show at the  theatre/brewery that my husband and I co-founded , and to  give all the funds to cancer research . It was an amazing night. I told the story of my cancer journey, and our incredibly talented cast of improvisers took those ideas and themes and turned them into hilarious scenes that had the audience � myself included � laughing until our sides ached. But, as it seems to happen with every joyful occasion on my life now, part of me ...

PROFILES IN LUNG CANCER Lung Cancer Awareness Month 2015 Day 30: Jamie Shull, advocate "Anyone with lungs can get lung cancer." I am happy to connect you all with lung cancer advocate Jamie Shull. Jamie will be quite thrilled when lung cancer is a manageable, chronic disease, that keeps people living and living well. She feels strongly, �Anyone with lungs can get lung cancer.� That is the message she spreads. The cancer bomb exploded into Jamie�s life when her husband of 18-years, Kurt, was diagnosed with advanced stage lung cancer in December 2010. She took on the roll as primary caregiver doing what ever it took to ensure the best care for her husband and their 14-year-old son. First line treatment took nearly everything out of Kurt. Unwilling to accept the way things were headed, Jamie, using her superior �get-shit-done� skills, found a clinical trial at a local teaching hospital � a turning point for Kurt as well as lung cancer as a whole. ...continue reading...