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.

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...

"Security is mostly a superstition." - Helen Keller I like reason and facts. I question everything, and always want to see evidence. I think I am a pretty sensible, level-headed person. And yet.... I wear the same socks for each CT scan. I wear my favorite shirt for each appointment where I get scan results. I wear two "charmed" necklaces every day. And I have saved every empty bottle of my cancer drug Xalkori. Saving my first bottle of Xalkori didn't seem so strange, since it was such a momentous occasion when we found my driver mutation and I started taking this magic medicine. And then I kept the second bottle so the first wouldn't feel lonely, and by the time I got the third bottle I couldn't bring myself to throw that one away because the medicine was working so well. So now here we are, a year later, and I have over a dozen bottles cluttering up the shelf. Ridiculous, yes, but that totally irrational part of me thinks that maybe if I get rid of th...

I've been following musician Zoe Keating's struggles with their insurance company after her husband's recent diagnosis of stage IV lung cancer with mets to the brain, and it occurred to me how many people in my lung cancer family have fought that same battle. When diagnosed with advanced lung cancer - one of the deadliest cancers out there - we should be focusing on fighting for our lives, and enjoying time with loved ones. Instead, so many of us have to expend our energy fighting with insurance companies. Example #1: Zoe Keating's (@zoecello) husband Zoe has been wonderfully public about this fight, posting images of their bills and transcripts of phone conversations with their insurance company. Thanks to the power of social media, Anthem Blue Cross had agreed to cover his initial hospital stay. Here's hoping they continue to cooperate throughout his treatment.   To Read More: "Read the fine print" - tumbler post that includes photos of th...

Medicine is expensive. Healthcare is expensive. Research is expensive. Life is expensive. Is it worth it? I read an article (thanks to @BrendonStilesMD for tweeting it) which purports that crizotinib (aka Xalkori, aka my life-saving medicine) is not worth the expense.  �Crizotinib Not Cost-Effective, Says Canadian Study� Yes, this is a very expensive medicine (about $10,000/month), and I am grateful to Pfizer's co-pay assistance program which lowered my co-pay from $1,600/month to $10/month.  Perhaps what bothered me even more than the article were some of the comments, left by doctors: "It would be justified if this drug really cures the patient and save a life. After all life cannot be measured in dollars. But it does not cure any cancer at all, merely delaying the inevitable end by a few months or (if the patient is very lucky), one or two years. What right have drug firms to charge such a huge price by pretending that a modest palliation is a cure?" or "O...

There are few times in your life when it is nice to be called "unremarkable." At scan time, it is quite nice. My liver is now "unremarkable." It looks just like any normal liver, meaning no mets. The bone mets are sclerotic, essentially like scabs or scar tissue. My primary tumor in my lung is 16mm, which is slightly smaller than a dime. Unremarkable feels pretty remarkable to me.  

The past few weeks have been pretty challenging. The side effects from my new superdrug, Xalkori, hit me hard. Hats off to fellow stage IV fighter and Xalkori user Kim (you can read all about her at aquariusvscancer.com ), who warned me that I should give myself a good month to settle into the side effect routine with this drug. Boy, was she right. I've had a crazy number of side effects: nausea, vomiting, reflux, taste changes, constipation, diarrhea, stomach cramps, dry eyes, blurry vision, achy knees and hips, fatigue, and strange strobe-like visual effects. That last one is pretty fascinating. When I have been in a dark room for a while (such as watching a movie) then move into the light, for a few minutes I get tracers around moving objects, sort of like those stroboscopic photos I remember seeing in Boston. I went to the eye doctor to check out my intermittent blurry vision and he determined it was because of how dry my eyes are ("they look like stucco"). While a v...

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...