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...

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!

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*, ...

I have completed treatment 2 of 5 for my targeted brain radiation. You may recall that, since there WAS living tumor in the section they removed from my cerebellum, we decided to radiate the perimeter around what was removed, in case there were any tumor cells there. Well, let me just say that Radiation Is Kicking My Butt. Check out the imprint the super-tight mask leaves on my face. It wears off after about an hour. I was mentally prepared to feel wrecked after surgery; I was not so prepared for this. In addition to the exhaustion, I have had awful headaches and nausea. I talked to my Rad Onc about this and he said it was from brain swelling, and prescribed a course of steroids. Yay, more steroids. But if they stop the headaches, I�m happy to take them. The upside of spending my life on the couch is that I have been doing projects like teaching my kids how to use the sewing machine. It�s still Lung Cancer Awareness Month, and I still have lung cancer, and I�m still raising money to fu...

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...

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'm sure you have all been following my brain met saga with baited breath ;) so today I will bring you the latest MRI results, which are the best bad news. The MRI literally says "no definitive disease progression" and yet I am planning to have more SRS , aka brain surgery without the cutting. In order to explain how that is not crazy, let me fill in the back story. I have been taking crizotinib (Xalkori) for my ROS1+ lung cancer since November of 2013. It has been working amazingly well at controlling the cancer in my body, but it has the one big flaw that it doesn't work well in the brain. Therefore, I get regular brain MRIs to keep watch on that area. In September 2015, the first brain metastasis appeared . In October of 2015 I had SRS for that small brain met , which was successful. (Yay!) In May of 2016 I had SRS for a new small brain met , which was also successful. (Yay!) In July of 2016 I had a follow up MRI which revealed two new, tiny (1-2 mm) spots. They we...

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...

I am not new to the world of cancer. I survived childhood osteogenic sarcoma , and have been living with stage 4 non-small cell lung cancer for two and a half years. I have had my share of chemotherapy drugs (adriamycin, ifosfamide, methotrexate, carboplatin, Alimta, Avastin), I have had several radical surgeries to save my right arm, and I have been benefitting from a cutting edge targeted therapy . But, with all of these treatments, the one I have never experienced is radiation. Until this past Monday, that is. As I wrote about in " The Other Shoe ," my regularly scheduled MRI showed that while the targeted medicine I take for my ROS1 mutation is doing a fabulous job controlling the cancer in my body, some sneaky cancer cells made it into my brain. So, on Monday, I had the super fun experience of stereotactic radiotherapy. The morning started bright and early with a 7:00 a.m. check-in. I was told to take my Valium and Norco in the parking lot, so that they would start work...