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...

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...

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 ...

I've been rather giddy about my ROS1 mutation news. When I met with my oncologist on Tuesday, she told me that I am the first person at the University of Michigan Cancer Center EVER to test positive for ROS1. She said the technician ran out into the hall screaming when he got the results. The tumor board couldn't stop talking about it. "We finally got a ROS1!" How cool, I'm Patient #1. My oncologist wrote my prescription for Xalkori (the brand name for crizotinib), then paused as she handed it to me: We may run into some problems, because this is considered off-label for ROS1. Urg, I didn't even think of that. Because the ROS1 group is so small (only about 30 cases), there have been no clinical trials specifically for us. We have tagged along with the ALK mutation trials because, thankfully, the mutations are similar enough that their targeted drugs also work for us. But technically, there are no drugs approved specifically for ROS1. My oncologist assured me t...

This belief has driven how I respond to stressful situations throughout my life. When I was pregnant with our first child, I took every class I could find, read lots of books, and watched many hours of birth videos (thanks to my midwife sister). I learned and got ready. When I found out we were having twins, I read books and asked questions of every twin I knew. As the pregnancy progressed and took a complicated turn, we were told that the girls would likely be born severely premature and if they survived they would face a lifetime of challenges. In response, I started reading about raising children with special needs. I subscribed to blogs written by some amazing families with special children. I got prepared. When I was diagnosed with lung cancer, I dove into the research and tried to learn everything I could about this disease. Actually, that is not quite true. For the first few weeks I actively avoided reading anything about it. I knew enough to understand how dire it was. I couldn...

Since this is my last cycle with my first-line chemo triplet (carboplatin/alimta/avastin), I thought I would give a little more detail about the experience. Check me out, I'm getting nostalgic. Day 0 (day before infusion) : I start the pre-med steroids, and the effects kick in by evening. I feel amped up and my joints start arching, particularly my hips. Plus I get this weird insatiable hunger, with pronounced cravings for meat. I am unable to fall asleep until after 4 am. Day 1 (infusion) : I start with a blood draw to check that my blood work is good enough for the next onslaught of drugs. This goes off without a hitch, in and out with little delay. Next stop is the oncology department. My oncologist is out of town, so I have a quick check in with the nurse. My blood counts look good so we go ahead with the treatment as planned, and schedule my next CT scan for November 8. I am leaving oncology at 9:15 am and head over to the Infusion Center for my 10 am appointment. At 12:45 pm ...

It is day 4 after chemo (cycle 6), so I am pretty wiped out. My exciting outing for the day was a quick haircut at Great Clips, since we are going to have some family photos taken on Tuesday and I thought I should try to look decent. We have been meaning to get photos done since the girls were born (yes, over 2-1/2 years ago) and we are finally doing it. I hadn't realized how complicated small talk with strangers can become when tackling a major health issue. My friendly stylist chatted away, as they always do, asking me what I was up to today. WHAT I THOUGHT : Sleeping, recovering from chemo, trying to eat a lot of calories and keep my fluid intake up. WHAT I SAID : Oh, I have had a pretty relaxed day. Just taking it easy. Somehow the conversation came around to what I do, which is a weird topic of conversation for me now, because I am still in grad school, but only taking 1 class, and I am only working very part time. She asked what I was studying, I replied Theater for the Youn...

On Tuesday I am due to have cycle #6 of this chemo cocktail (carboplatin, avastin, alimta), the second of my "bonus rounds." For some reason, cycle #5 has been incredibly kind to me. Sure, I had lots of the annoying side effects, (a weird taste in my mouth, tingling hands and feet that become incredibly sensitive, plus I got a stye in my eye) but those left after about a week. The fatigue is always rough, but this past week I have felt my energy returning to levels much higher than before I started chemo. The main thing is that I can breathe so much more clearly.  After I was diagnosed, I remember looking around our backyard, and I noticed that I had placed a lawn chair next to every one of the kids' play areas. I was so short of breath that I could not stand for any length of time to play with them. I didn't go up to Zander's room because I would be so very winded by the time I reached the top of the stairs. In those days, having a shower and walking back to our ...

23 years ago today, at age 14, I was diagnosed with osteogenic sarcoma of the right humerus. It is strange that now I have to refer to that as "the first time I had cancer." I recall driving to the biopsy early that October morning, when the first fingers of Minnesota winter were really starting to grip the state, covering everything with frost and making the air harsh and brisk. I looked out the window and thought to myself, quite dramatically, "thus begins the winter of my life." The doctors very strongly suspected that the biopsy would come back positive for cancer, and told me they would be able to tell by looking at the specimen for just a moment under a microscope, so the plan was to keep me under anesthetic and put in my port once they confirmed it was positive. I remember waking up after surgery and feeling for my new port. It was there, so I knew my answer. "Here we go." I fell back into my groggy slumber. What followed were 11 of the hardest mont...

I learned today that a young woman just lost her 29 year old husband to stage 4 lung cancer. Three short months from diagnosis to death, he leaves her with two small children and another on the way. I am speechless. It is a brutal reminder of just how cruel this disease can be. And it reminds me to count my blessings. This round of chemo has been remarkably kind to me. I feel quite well right now. I can breathe so much more easily than I could before starting chemo, and I have virtually no pain from where the bone mets are (were?). Today, I was well enough to take a long walk around the neighborhood with my husband and dream about our future endeavors. It was the sort of day where I could almost forget about cancer.

As I am awaiting the results from my CT scan, I have been trying to think of ways to deal with this fear of the unknown. I have tried to logic my way out of it, by telling myself that nothing is significantly different before they tell me the results versus after, the only difference is my knowing. That kind of helps. I have tried to comfort myself with numbers which, incidentally, is how I had such a wonderful drug-free birth with Zander (keep the mind busy so it cannot address the pain!). Currently, I am trying to quantify my fear of various outcome. If there are between 1 and 2 new mets, then I will feel somewhat fearful. If there are 3 to 5 new mets, then I will feel moderately terrified. If there are greater than 6 new mets, then I will feel very scared. This has been somewhat helpful. I would be nice to use a lovely bottle of wine to address the fear, but I am trying to protect my liver so that option is out. I heard from a fellow lung cancer survivor that she pops a Valium to ge...

I am realizing that I have been, perhaps, too delicate in describing my health situation. People keep asking me questions that indicate that I need to be more blunt about the current state of affairs.  So here are the bold facts, no holds barred: I have Stage 4, metastatic adenocarcinoma, a non-small cell lung cancer (NSCLC). It is incurable, and considered terminal with an average life expectancy of eight months. Since there is no cure, there is no end date to the treatment.  I will continue to have chemo (or other treatments) for the rest of my life. There is no plan to do surgery since the cancer has already spread throughout my body, making removing it from my lung pointless according to current thinking on the subject. As of my last CT scan, my current chemo regiment appears to be working. This is a great thing, but it is by no means permanent. The tricky thing with cancer is that is can mutate and become resistant to the chemo at any time.  I am currently on a ...

When I was in high school, our well-meaning cheerleaders painted the inspirational phrase, "ATTITUDE IS EVERYTHING" on the wall of the lunchroom. While their intentions were good, the execution was poor in that they chose to paint it in our school colors, yellow and purple. They alternated the color with each letter, and unfortunately chose a very light shade of yellow. When painted on the off-white walls, the saying looked like this: A T T D  I  E E Y H N I remember staring at it for ages, wondering what this cryptic message could mean. ----- I have received a number of beautiful cards and messages from people, many of which have remarked on how I am keeping such a positive attitude through all this. I definitely appreciate the kind words, but I'm not quite sure how else I could proceed. I certainly have my moments where it hits me how totally crappy this all is, but I don't see much point in dwelling on that, since it is pretty hard to function if I just feel sad al...

I love summer. I loved it as a kid, and I love it even more as a mom. The long, lazy days, the ease of going outside to play without bundling up in winter gear, the festivals (especially in Ann Arbor - I think they use anything as an excuse for a festival). My first chemo went really well. I felt nauseated for the first several days, but the anti-nausea medicine helped quite a bit. As I have told several people, it brought it down to the "pregnant with twins" level, so I was already familiar with that. The fatigue is rough, since I am used to going non-stop all day. So, I guess I am finally learning how to take breaks and slow down a little.  The second week was my "danger zone" week, since my blood counts (read: immune system) were very low, leaving me susceptible to infections. I stayed home that week, and washed my hands religiously. It reminded me of that month when the girls were in the NICU, and everyone had to be so careful around those tiny babies and their ...