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...

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...

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.

My daughter shared her cold with me (thanks, Miks) and when you mix a simple cold with a "chronic disease" like metastatic lung cancer, well it pretty much knocks me out. I've spent most of the day lying on the couch. After I picked up Zander from school, I immediately lay back down on the couch without taking off my coat or anything. Zander froze and stared at me lying on the couch and then said, "It makes me feel like your cancer is growing again." I reminded him that I just had scans and the cancer is so small they can barely see it. "I know, but it makes me nervous to see you sick." He was only 4-turning-5 when I was diagnosed and SUPER sick, and he says he doesn't really remember those days, but I think on some level it has stayed with him. Sigh. Also, my apologies that I have neglected this lovely blog for so long. Things are good with my health, the latest MRI showed that the SRS worked super well, so the plan is to keep chugging along with ...

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...

Ha ha - I couldn't help myself. My dedicated readers will recall from my last post, " The Other Shoe ," that although Xalkori continues to be totally amazing at controlling the cancer in my body, it is not doing so hot in my brain.  So, as I predicted, I have amped up my participation in the medical appointment world, and have seen a radiation oncologist, a neurosurgeon, corresponded with several lung cancer specialists, and had a high-definition MRI. Having cancer is definitely a part-time job. But on the upside, I now have a RAD onc! Both the rad onc and the neurosurgeon expressed some skepticism about the two tiny spots that the MRI picked up, questioning if those were even brain mets at all (there was no question on the 9 mm one). The repeat MRI used 1-2mm slices rather than the standard 5 mm slices, so that they could get a very high definition picture of what was going on in my brain. The stereotactic radiosurgery (SRS) is highly precise, so they need to know detail...

From the day I started chemo for my stage 4 lung cancer, I have had nothing but great results. The chemo started working immediately and my breathing improved noticeably after the very first treatment. Each scan showed shrinking (or at least stability) of my tumors and a PET scan even revealed that my targeted medicine Xalkori (crizotinib) had led to a complete metabolic response to treatment. But everyone living with metastatic cancer knows that this is incurable. We all know that one day the treatment will stop working, one day the cancer will get smarter and find a way around the medicine. I am on a fancy targeted therapy that has a great track record of controlling cancer in ROS1 -positive folks like me . However, it is well known that Xalkori has one weakness, its Achilles' heel: It does not cross the blood-brain barrier. Any cancer cell that manages to slip into the brain can grow freely, unhindered by the medicine. I bet you can guess where this is going. My regularly schedu...

The times are a-changin' in CancerLand. Gone are the days when you simply had breast cancer, lung cancer or leukemia. Now each has its own specific type and these days you can often discover what precise mutation is driving the cancer. As I discussed in my post " A Personal Take on Personalized Medicine ," my cancer is driven by a mutation called ROS1 . In many ways, knowing this is a GREAT thing. When we found out what was driving my cancer, I was able to stop chemo and instead take a pill called Xalkori (crizotinib) that has been controlling my cancer for close to two years. That's fantastic! So what's the downside, you may ask? Well, of the over 220,000 new cases of lung cancer each year, only about 1 percent of those have the ROS1 mutation. While being unusual may have a nice charm to it, from a research point of view, it is pretty crummy. Why would researchers focus their efforts on helping such a tiny fraction of people? Us ROS1 ers lucked out by riding on ...

Thanks to my awesome targeted medicine, a pill that I take twice a day, it has been almost two years since I have been on IV chemo. While my scans still look great, my hemoglobin is low so I am having several weeks of iron infusions. I am so out of practice with IV medicine that I had forgotten all the hints I picked up during my time in the chair. I couldn't believe all the newbie mistakes I made, so I am writing down some tips here to help myself and you, my lovely readers. 1) Hydrate Fluids, fluids, fluids. Drink as much as you can the night before and the morning of your infusion. This will make it easier to find a vein for the IV, and it will help to flush the chemo out. I was kicking myself that I forgot about this when I went in for my infusion. After the third failed attempt at starting an IV I realized that the half-glass of apple juice I had had that morning just wasn�t going to cut it. 2) Pass the Salt This goes along with no. 1, but I would always have a salty dinner th...

"Can you think what the Mirror of Erised shows us all?" Harry shook his head. "Let me explain. The happiest man on earth would be able to use the Mirror of Erised like a normal mirror, that is, he would look into it and see himself exactly as he is.... It shows us nothing more or less than the deepest, most desperate desire of our hearts. You, who have never known your family, see them standing around you." - Dumbledore, from Harry Potter and the Sorcerer's Stone I am one of the lucky ones who, despite a diagnosis of stage 4 lung cancer and the terrible prognosis that goes along with it, is doing remarkably very well on a targeted medication. Yes, I deal with side effects, like my ongoing stomach issues ("Mommy has a sore tummy") and I sleep much more than the average mom of three small children. Compared to where I could be, I am doing fabulously well. So well, in fact, that cancer often takes a back seat for our family. It is always there, of cours...

I've had a ringside seat to the evolution of cancer care. The first time I heard the heart-dropping, stomach-churning, breath-stealing words, "you have cancer," I was 14 years old. The second time I heard them, I was 37. The first time, a chronic ache in my shoulder turned out to be bone cancer. The second time, a chronic cough turned out to be metastatic lung cancer. When I was a teenager undergoing chemotherapy for osteosarcoma, I never really thought I was going to die. Me and my teen cancer comrades in the hospital went through hell together. But I na�vely thought we would all get better and go home again one day. I have seen cancer through an adolescent's eyes, and I have seen it through the eyes of a mom with three small children. I was a busy mom, working, going to grad school, and raising our four-year-old son and two-year-old twin daughters. I was tired all the time, but who wouldn't be? And I had a string of chest colds that I just couldn't shake. Or...

For those of you who follow my scan/doctor appointment schedule (which is amazingly sweet, by the way) you would be passing the time this weekend patiently waiting for scan results on Tuesday. And you would have been almost as shocked as I was Friday afternoon when my phone rang, and the caller ID showed that it was the cancer center. By the time I answered the phone and heard my oncologist's voice, I was trembling. Why in the world would she be calling me when we had planned to discuss the results at my appointment on Tuesday? She quickly said, "Don't worry, your scans are fine. But we found a small blood clot and would like to be safe and start you on heparin injections. I'm so sorry you will have to give yourself shots." Me: " But my scans are fine?!? Okay, when do I start?" I don't love the idea of twice-daily shots, but I like it a lot better than cancer progression! I went in to the clinic Friday afternoon and learned how to do the L ovenox sho...

There has been a lot of talk lately about the personalized medicine revolution and President Obama's initiative to fund precision medicine. We hear about genetic sequencing and analyzing DNA, but what does all of this mean to a cancer patient? Sit back while I tell you a little story�. In May of 2013 I was diagnosed with stage 4 non-small cell lung cancer at the age of 37. No idea why. Since it had already spread from my lung throughout my body, surgery was not an option. Cue the devastation, the panic, the shock. The plan of action was chemotherapy, and while the side effects were far from fun, I was relieved that at least it was working, and my giant tumor (seriously, it wrapped all around my left lung) was shrinking. I could breathe a little easier . . . literally. But a body can only tolerate harsh chemo for so long before the side effects become too damaging to the other organs. So, what do to next? The cancer was smaller, but not gone, and we needed another treatment to keep ...

All is well in scanville! I've just passed my one year mark on the wonder drug Xalkori, and now I can breathe (relatively) easy until my next scan in three months. Speaking of breathing, here is one of my favorite lung cancer infographics.  At 3 pm EST today I will be participating in the WEGO Health Activist Twitter Chat (#hachat), which today is focused on lung cancer. Lung cancer bloggers Linnea Duff (@1111linno) and Samathan Mixon (@mixon_samantha) will also be participating, and my fellow ROS1er Janet Freeman-Daily will be guest hosting. We will be addressing these questions: Q1: Why do you share your lung cancer journey online? What motivates you to write a post? Q2: What kind of info do mbrs of online lung cancer community want? What messages do you try to convey? Q3: On which social media sites do you share lung cancer info? How do you choose what info to share on different sites? Q4: How/where do you find content about lung cancer that you want to share? What makes cont...

I almost titled this post "Sharing My Story," but realized that this is much bigger than me. Today I had the honor of speaking at the Peter A. Kaylor Lung Cancer Walk in Allegan, Michigan. I know how lucky I am to be able to speak out about this disease, when so many others who have gone before me are no longer able to do so. This was what I had to say about my one year, four months, and five days (so far) of living with lung cancer. ~ ~ ~ ~ ~ It started with a cough that wouldn�t go away. But everybody I knew had a cold, so it didn�t seem like a big deal. I started to feel a little better, but before long I had another chest cold. And I was exhausted, but I was in grad school full time, working, and raising a 4 year old and infant twins. Who wouldn�t be exhausted?!? But my breathing kept getting worse, so the doctor thought it was a return of my childhood asthma. We tried one medication, then another, then another. But I kept getting worse. Finally, in May of 2013 they sent...

Sometimes I find it hard to tell the difference between real life and fiction. This is probably due in no small part to growing up obsessed with books, stories, and plays. I tend to see life through the lens of a story: what is that character's arc? Where is the surprising twist? The "all is lost" moment? I have always been particularly drawn to stories of a plucky young heroine/hero (Buffy, Ender, Katniss, Tris) facing seemingly insurmountable odds in a bizarre reality, who somehow finds a way out in the end. This past weekend I attended a conference in Boston for people with stage IV lung cancer, whose tumors have specific genetic changes (EGFR, ALK, and ROS1) that can be treated with targeted medicines. It was remarkable to hear from the rock star doctors who are conducting the research that is keeping me alive. What was possibly even more powerful, however, was to sit in a room full of a hundred people who are on this same crappy journey as me. Many of these people I ...

I am alive because of research. This may sound like hyperbole, but when I think back to how very sick I was by the time they finally figured out what was going on, it is not hard to believe. It was only once the chemo started working that I was able to walk around and talk without getting short of breath. When we found my ROS1 mutation, I was able to go on the brand-spankin'-new drug Xalkori. This incredible leap of science is able to specifically target the mutation, and it has gotten me to NED . How freaking amazing is that?!? Sadly, lung cancer research receives very little funding. In the wake of the impressive IceBucketChallenge, several articles have come out addressing the disparity of funding for diseases. The image below, from " The Diseases We Donate To Aren't Always The Diseases That Kill Us ," shows that while breast cancer (pink circle) and prostate cancer (orange circle) are very popular places to donate, the number of deaths caused by these illnesses is...

As I lay in bed this morning, my semi-conscious mind tried to decide if I was ready to face today, a day which entailed finding out if my cancer was, in fact, starting to invade my kidneys as was suspected from my last CT scan. As usual, Jason was already up and taking care of the kids because, well, because he is awesome and because my sleep needs are now much greater than they used to be. I heard him bound up the stairs and say into the phone, "Let me check if she is awake." I was, and I was greeted by the cheery voice of my wonderful PA. "It's good news!" Not only are my kidneys clear, but all the bits of tumor that are left in my lung are dead. There is no evidence of cancer living in my body. I have achieved the holy grail of stage IV cancer, NED (no evidence of disease). !!!!!!!!!!!!!!!!!!!!!!!! And it is Jason's birthday! He is quite the good luck charm. One year ago today I got the results of my first scan after starting chemo, the scan which would t...