Fifth Time’s the Charm

Today marks cycle 8 of my every-three-week chemo schedule. I’m tolerating it pretty well, I’m happy to say. The antiemetics work wonders, and I just plan for about a week of being super wiped out, so it is manageable.

Oh, did I mention that I had an allergic reaction to the carboplatin during my fourth infusion? Thankfully it was caught and reversed quickly, so no big deal. But it does mean that I cannot have carboplatin again. I was only scheduled to have 4 rounds of it anyway this time, but it is a little scary knowing that it is out of the arsenal now.

Also, fluid has slowly been building up around my right lung (the good lung) so I had a thoracentesis and they drained a liter of fluid. Sigh. I continue to drain my left lung at home every three days, so the fun goes on.

In some very exciting and hopeful news, my wizard from Colorado told me that he has been growing my cancer cells in his lab and he thinks he knows why my cancer has stopped responding to the TKIs (yay research!!). It seems my cancer has developed a resistance called IGF1R, Insulin Like Growth Factor 1 Receptor. AND there is a TKI that targets this, ceritinib.

Commence the hoop jumping! These drugs aren’t cheap, so step one was getting it approved by insurance (it is approved for ALK, not ROS1) which we did! But the copay was really high, so the hospital helped me apply for a program through the manufacturer. After lots of paperwork, hours on the phone, and shipping delays, I finally got the meds on Monday. The moral of the story for my fellow patients is that there is usually work around these high prices, so don’t give up.

The plan now is to continue on with the chemo in addition to my 5th TKI. While ceritinib worked great for my cells in the lab, there is no guarantee that it will work as well in my body, so the safer route is to keep the chemo going and add the new med.

To recap my years spent on TKIs:

1. Crizotinib = November 2013-December 2017 (4 years and 2 months)
2. Entrectinib = December 2017-October 2018 (11 months)
3. Lorlatinib = November 2018-January 2019 (3 months)
4. TPX-0005 / Repotrectinib = February 2019-July 2020 (18 months)
5. Ceritinib = January 2021-???

Let’s hope that my wizard’s theory is correct, and that ceritinib will give me a nice, long run.

A Reprieve

I had scans following two cycles of chemo and it seems that the medicine is working its magic. The cancer has been knocked back in my lungs and my heart, the new stuff that showed up in my abdomen in July is gone, and sclerotic bone mets have appeared, which indicates that they were hiding out but are now dying. (I guess I also had some broken ribs?!? Who knew.) Much to my surprise, even my brain MRI showed improvement, with mets and edema showing reduction. Whew!

Cancer is a thief that steals by inches and by miles. Sometimes stealing pennies, sometimes pearls.

For the past few months it’s has stolen my breath. It’s startling to look back on how frail I was just a few weeks ago. Jason had to push me in a wheelchair for my first chemo, since I was too weak and short of breath to get there under my own steam. During that time, I couldn’t walk more than a few steps.

And now, thanks to chemo, I can walk again. I can yawn again. I can hold my breath. I can (mostly) take a deep breath.

I still have a very long way to go, but I can feel my lungs slowly getting stronger.

My balance issues have remained, meaning it wasn’t the trial drug causing those. They are likely the result of brain surgery and several bouts of radiation. Which also means there may not be a ton of improvement there, even with effective cancer treatment. Wobbliness may just be part of me now.

Cancer has stolen my gracefulness. It has stolen my handwriting. It took my naïveté years ago.

But chemo has given me back my breath, so I willingly continue my cantankerous partnership with this prickly friend.

I can go for a walk again. I can cook a meal again. I can take my kids to the park again.

I am slowly clawing my way back.

What a Week

A lot happened last week. In a nutshell, I’m out of my clinical trial, and I spent 4 days in the hospital dealing with malignant fluid around my heart. 

I had been doing my monthly clinical trial visits virtually since March, but as things have been getting more worrisome (increasing shortness of breath) my Wizard wanted to do a full evaluation in person. So, I went from extremely careful pandemic behavior to getting on an airplane. I’m very glad I went. I had a full battery of testing, and discovered that I had fluid around my heart (pericardial effusion). My doctor was going to admit me on the spot, but understood that I wanted to come back home first, and felt it was safe to delay to later that day. My beloved family picked me up at the airport and dropped me off at the emergency room. At least I got to spend a few minutes with them. 

Thankfully, the heart issue was not what they considered “emergent” (no need to rush right into a procedure), and they were able to wait until the next day, make a plan, and get me scheduled. And I got a private hospital room, so that was nice. 

They placed a small drain into the pericardial sac and drained out the fluid. I had to stay in the hospital for three days to observe the draining, but it was largely uneventful (thankfully). The next steps are a follow up echocardiogram and then getting scheduled to start chemo. 

It’s funny looking back on how I have changed since I did chemo in 2013. Then, I was much more Season 1 Buffy (“give me something pointy and tell me where the big bad is”) and this time around I’m finding a lot of resonance with Season 6 Buffy (“Life isn’t bliss, life is just this, it’s living”). 

I’m going through the very painful repotrectinib withdrawal, which is certainly impacting my mood. The aches are remarkably similar to the entrectinib withdrawal I went through in 2018, so at least I know what these awful muscle pains are about. 

I’m holding out a lot of hope for my chemo redux. It worked amazingly 7 years ago, and all of my treatments since then have been laser-focused on the ROS1 mutation, so it makes sense to go more broad-spectrum.  

If you have some well-wishes to spare, I will happily accept. This is kind of a lot to absorb, plus pandemic and all. 

I love this song, and I feel like it could be the theme song for 2020. 

“Anger wants a voice, voices wanna sing 

Singers harmonize till they can't hear anything 

I thought that I was free from all that questionin' 

But every time a problem ends, another one begins 

And the stone walls of Harmony Hall bear witness

Anybody with a worried mind could never forgive the sight 

Of wicked snakes inside a place you thought was dignified

I don't wanna live like this, but I don't wanna die.” 

- Vampire Weekend’s “Harmony Hall”

Clinical Trial Lifestyle

I successfully passed all the tests and got accepted into the study! There is a weird sweet spot you have to hit in order to qualify for a clinical trial. If you don't have enough cancer in your body, you will not qualify because you do not have "measurable disease." If  you have too much, you will be too unwell to be considered as a candidate. I hit the goldilocks level of cancer! Yay for having measurable disease?!? What a strange thing to wish for.

I took the first dose on Thursday and now I just hope (and hope and hope) that it works.

I got to see both of the Wizards on my trip to Oz (my ruby slippers were a hit), and as usual they impressed me with their intelligence and compassion. They both have the remarkable ability to treat a patient as an equal partner in their care, something I have rarely found elsewhere. I love that they take the time to explain the science behind the treatments. I asked what I could do if this doesn’t work, and he explained that a chemo/immunotherapy combo (carboplatin, pemetrexed, and pembrolizumab) would be the next step. While most drugs need to physically reach the cancer (a challenge with brain mets), immunotherapy just has to stimulate the body. Well, here’s hoping I don’t have to find out for a while.

So now I set about trying to figure out the logistics of my new life, as an out of state clinical trial patient. With appointments once per week for the first two months, this is going to get complicated.

I have contacted several foundations to help shoulder the cost of all of this travel.

Here is a summary of what I have found (hopefully this will help someone else going through this). All of the folks I have spoken to in these organizations have been incredibly kind and helpful, even the ones that didn’t work out for me.

Air Charity Network
https://aircharitynetwork.org/request-a-flight/
This is a collective of independent pilots who will fly patients for treatment.
They need at least 7 days to arrange the flight.
Challenge: small planes can only fly about 250 miles, making longer trips (like mine) impossible.

Lifeline Pilots
https://lifelinepilots.org/
Independent pilots.
Challenge: same as above

Corporate Angels Network
http://www.corpangelnetwork.org/
This organization works with corporations to let patients fly along on their private planes for free.
Challenge: apparently no one is flying between Detroit and Denver for business.

Mercy Medical Angles
https://mercymedical.org/
They work with commercial airlines to give unsold seats to patients traveling for healthcare. They will provide a maximum of 3 flights per year, with at most 1 flight per month.
Challenge: they require a ton of paperwork (of the “prove you are poor enough” variety), and need at least 21 days advance notice. I am in the process of completing this.

Lazarex Cancer Foundation
https://www.lazarex.org/
Their focus is on helping patients overcome the financial burdens involved in joining a clinical trial. Exciting that they say they even help with the other costs, like hotels and taxis to and from the appointments.
Challenge: not sure yet, still in the process of completing paperwork.


In the mean time, I have had a few wonderful people reach out to help with flights. Emily Bennett Taylor, stage IV lung cancer survivor, offered to buy me a plane ticket to Colorado. (If you have never read her story, you should. It is amazing. https://embenkickscancer.wordpress.com/) She said that a lot of people helped her during her treatments, and she wanted to pass along the kindness.

And then! The awesome person and excellent musician Zoe Keating gave me some of her miles to help with flights. Zoe and I became friends when her husband was going through treatment for stage IV lung cancer. He has since passed away. Cruel disease, this is.

I’ve met some of the most amazing people because of this horrible diagnosis. It’s the club no one wants to join, as they say.

Knowledge is Power

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't face seeing it in black and white.

Eventually, I took a deep breath and started reading.

Terminal.

Eight month median survival.

Gulp. Well, now I know. Now I will learn all that I can.

So, THEN I started wading through journal articles that were way over my head, desperately trying to understand this thing that was taking over my body.

One very interesting area of research is the driver mutations for adenocarcinoma. By analyzing a sample of the tumor, the doctors can sometimes determine what is causing the cancer to grow. This has been a game changer in the world of NSCLC. Rather that using chemotherapy, which as Jason said is like a shock-and-awe campaign on the body, there are now a handful of drugs that are specifically designed to target a few driving mutations.

Early on in my treatment, my oncologist tested my tumor sample for two common driver mutations with targeted drugs, EGFR and ALK. Sadly, I did not test positive for either. Over the next few weeks, as I gradually started to understand a bit more about this cancer, I learned that there are actually over a dozen known mutations, each that seem to correlate to certain population characteristics (smoking status, age, race). I went to my next appointment with my long list of possibilities and said that I wanted to be tested for all of them. Unfortunately, the sample that they had taken during my biopsy was too small to send off for this full battery of tests. Since the chemo was working, it made more sense to continue on and wait until my cancer started growing again to biopsy more tissue and test for mutations.

But something kept nagging at the back of my mind.

Fast forward to my sixth cycle of chemo. My oncologist was out of town, so I had a short visit with the nurse where she mentioned that I would be starting maintenance with avastin, or alimta, or alimta and avastin. I left feeling a bit unsettled and dove into researching maintenance therapy.

And that nagging feeling came back.

Then it dawned on me: there wasn't enough tissue left to test for a dozen mutations, but I bet there was enough to test for one.

I emailed my oncologist and asked if we could test the sample for the ROS1 mutation. I had a hunch.

I bet you can guess where this is going.

Yes, the test came back and revealed that we have found what is driving my cancer. And even better, there is already an FDA approved drug to treat it, crizotinib, plus several others possibilities currently in clinical trials. 

This chart shows the breakdown of mutations in NSCLC. See that tiny little pink sliver at 1%? That's my tumor's mutation!

Source: Targeting Tumors Early: Trials Push Novel Agents to Forefront

Targeting Tumors Early: Trials Push Novel Agents to Forefront

- See more at: http://www.onclive.com/publications/oncology-live/2013/january-2013/targeting-tumors-early-trials-push-novel-agents-to-forefront/2#sthash.IHaQjWge.dpuf

Targeting Tumors Early: Trials Push Novel Agents to Forefront

- See more at: http://www.onclive.com/publications/oncology-live/2013/january-2013/targeting-tumors-early-trials-push-novel-agents-to-forefront/2#sthash.IHaQjWge.dpuf

This is pretty exciting news, as it opens up a whole new treatment path. I will be meeting with my oncologist on Tuesday to discuss starting crizotinib. I have heard that this drug comes with its own set of challenging side effects, and it can take weeks to months for your body to adjust to it. Most people say that once you settle in, it becomes more tolerable than chemo. Plus, it is administered in pill form, so I will get a break from IVs for a while!

Most importantly, though, it means I have more options. I know that I will be dealing with cancer for the rest of my life, so the more tools I have to work with, the better. I keep reminding myself to temper my excitement, that there is always the chance that I will be in the minority for whom the targeted drug does not work, and cancer can eventually mutate again in response to treatment. For now, though, I am going to revel in my mutation.

Targeting Tumors Early: Trials Push Novel Agents to Forefront - See more at: http://www.onclive.com/publications/oncology-live/2013/january-2013/targeting-tumors-early-trials-push-novel-agents-to-forefront/2#sthash.KPAklSr7.dpuf

Farewell Carboplatin, Thanks for the Dead Cancer Cells and Painful Hands and Feet

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 (after over 3 hours in the waiting room), they call me in for my infusion. The room is a large U shape with recliners and IV pumps set up around the perimeter, and a nurses' station in the center. I settle into my comfy recliner and ask for warm blankets to wrap up my arms. This helps to make the veins pop out more and hopefully make the IV access easier. Jason pulls up a not-as-comfy chair and goes to get us something to eat from the snack room. The steroid hunger is kicking in big time.

It takes two nurses and three needle sticks, but they finally get an IV going. No shots today, so that is the last poke for me. They start the anti-nausea pre-meds, and by 1:30 they finally get the chemo started. Jason and I get out the iPad and headphones and start watching "Orange is the New Black."

There is some drama when we hear a nurse from the other side of the room call out, "Guys!" Her voice has that blend of urgency and forced calm that speaks volumes. All the nurses run over and we hear an assortment of rapid-fire orders about Benadryl, call a code, history of asthma, allergic reaction. A tense quiet falls over us as all the patients freeze, hoping for the best and knowing that this could be any of us. Several minutes later the situation appears to be under control and everyone goes back to their business.

My final drug infusion wraps up around 3 pm and we head out. I feel okay, just very worn out. And STARVING. I stop at Panera and pick up a sandwich that I take home and proceed to devour. I spend the rest of the evening going back and forth between my bed and couch, plus enjoying a lovely Korean dinner thoughtfully brought over by a friend.

Day 2: I feel generally run down, but not terrible. Tired, vaguely yucky. Thankfully, Aloxi (the anti-nausea drug) works really well for me. I have a couple of nice bruises on my arm from the IV attempts, and some soreness at the infusion site. The tingling and sensitivity is starting in my hands and feet, a neurotoxic side effect of carboplatin. I spend most of the day on the couch or in bed, "lounging out" as Zander would say. There are also the other GI side effects, but in the effort of avoiding TMI, I will just say that Miralax is great, as are those flushable wipes made for potty-training toddlers. And Activia is really helpful. Who knew?

Day 3: Still tired and run down, increasing tingling and sensitivity in my hands and feet. It becomes uncomfortable to open jars and use hot water. The funny mouth taste is starting, a bizarre and rather gross side effect. It tastes like I have some strange after taste from something sour or slightly off. The only things that seem to help are sucking on hard candies or nibbling on snacks. More lounging out.

 

"Resting" on the couch with my girls

Day 4: My mouth tastes gross. Just gross, gross, gross. It makes me want to sip on something all day - which is a good thing overall, I just wish I could get rid of this weird taste. Salty snacks seem to help. The tingling in my hands and feet is pretty constant today. I feel worn out still, but managed to have a short outing for a hair cut. I have a chronic runny nose and itchy eyes, a side effect from the Alimta. Not terrible, it just feels like I have allergies all the time and I go through a LOT of kleenex.

Day 5: I keep thinking I have more energy, but little things tire me out very fast. I feel sort of foggy-minded, I guess it is a mix of the fatigue and "chemobrain," or the impact of having lots of harsh chemicals coursing through my system. I find that it manifests in that I have a harder time multitasking. If the kids are talking to me and the TV is on and the water is running for the dishes, I have a really hard time following all of the sounds. I have to turn off the faucet and look right at the person talking in order to really follow what they are saying. A very strange feeling when I am used to doing a million things at once. I do manage to do some studying and take the online quiz for my Statistics class (I aced the exam! Woo-hoo!). I just need to focus a lot harder than I am used to.

Day 6: Things are improving. The sensitivity in my hands and feet is decreasing, making washing dishes way less painful. I managed to do a bit of vacuuming, did a quick grocery shop, and carved pumpkins with the kids. Still tired, but things are looking up.

Day 7: I am a marathon sleeper (really, if there were a contest I could totally win), but I am starting to feel more like myself. My feet are still a little sensitive, but cozy slippers and socks make them much more comfortable. Time to get back on my exercise routine!

So, there you have it, a glimpse at chemo week. I am very thankful that I am one of the luck ones who is still able to function somewhat normally while on chemo. Now comes the "nadir week," where I feel more and more okay, but my immune system takes a nose dive. Lots of hand washing and Purell!

Health Kick, or Is It Possible to Get Healthier on Chemo?

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 room was enough to require at least half an hour of bed rest to recover. 

Somewhere over the past few months, that has all started to change. I can now walk around carrying my daughters (one at a time, mind you!). I discovered this quite by accident when Mikaela was fussing and I picked her up purely on instinct and started walking. After a minute or two, I realized that I wasn't puffing for air. That was a wonderful moment. 

My new found ability to breathe has put me on something of a health kick. About 2 weeks ago, we bought this lovely new toy.

Mikaela working out

I decided that, since my lungs actually seem to be working again, I have an obligation to keep them as healthy as possible. I appreciate the ability to breathe so much more than I ever have before.

At first, I struggled to do more than a few minutes on the bike. However, after 2 weeks of dedicated practice, I can go 20 minutes nonstop. It's not so impressive - I have to keep it on the lowest setting, but remembering that it was only a few months ago that I could not climb a flight of stairs, I feel pretty excited.

I have also been drinking protein shakes to help keep me at a 2000+ calorie a day diet. Weight loss is a major problem for cancer patients, both because the cancer steals nutrients, and from chemo related nausea. Thankfully, the anti-nausea meds have been very effective for me, so I have been working to pack on the pounds. I am pleased to say that I have gained back all of the weight I lost, and then some!

Hopefully, Cycle #6 will be relatively tolerable, and I will be able to continue (slowly) improving my fitness level. It's not much, but it makes me feel good to be able to do something to keep myself in good condition. I hope to be in this fight for a very long time. 

An Exciting Time to Have Cancer

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 triplet of chemotherapy drugs: Carboplatin, Pemetrexed (brand name Alimta), and Bevacizumab (brand name Avastin). The standard treatment is to do four rounds with this trio (assuming it continues to work) and then go onto maintenance of Pemetrexed for as long as that keeps working. 

At my last appointment, my oncologist suggested that I do two additional rounds of this powerful trio since it seems to be working and I am tolerating it. I am totally on board with this decision, and actually walked into the appointment armed with a list of arguments to convince her of this approach. I was pleasantly surprised when she suggested it before I had a chance to launch into my pitch.

Let me back up for a moment and clarify what it means for the chemo to "work." There are essentially three possible verdicts from a CT scan.

1. The cancer is shrinking

2. The cancer is stable, meaning neither shrinking nor growing

3. The cancer is progressing, meaning the current tumors are growing and/or there are new metastases. 

My first CT showed verdict #1. Yay! In order to continue on the current line of chemo, you need either verdict #1 or #2. If you get #3, then you need to pursue other options. These take the form of other chemotherapy combinations or clinical trials. 

And that brings me to the title of this post.

I am discovering that a whole lot has changed in the 20+ years since I had treatment for my childhood cancer. Not only do they have MUCH better methods for managing all the terrible side effects of chemo, the whole way of thinking about treatment is undergoing an interesting and exciting shift.

It used to be that the three tools for cancer treatment were to cut it out (surgery), burn it out (radiation), or kill it with poison (chemotherapy). While these three are still used extensively, there are a few new approaches. For example, one of the chemo drugs that I am on, Avastin, is technically not chemo at all, but biologic therapy. Rather than killing the cancer outright, it starves it by preventing it from creating blood vessels to feed the tumors.

Another very exciting treatment is based on finding the driving mutation of the cancer, meaning figuring out what went wrong to make it grow out of control, and stopping that mechanism with a targeted drug. There are two well researched mutations for NSCLC, EGFR and ALK. My cancer does not show either of those mutations, but there are many others being researched currently. If we find my driving mutation and match it with the correct drug, controlling my cancer could involve a daily pill, with fewer side effects than chemo.

The third, and perhaps most innovative line of research involves using the patient's own immune system to track down and kill the cancer. There is a trial for this therapy going on in Karmanos, just down the road in Detroit. My doctor and I discussed at my last appointment that this is a possible option for me if/when the time comes to switch to a new plan of attack. 

So, although the prognosis of my disease is pretty much horrible, I do not feel entirely foolish for remaining perpetually optimistic. With all the changes going on, the statistics are becoming outdated. Also, I am young (the average age at diagnosis is 72) and healthy (I mean, other than the cancer!), which will (hopefully) put me on the good side of the bell curve.

-----

A few days ago, Mikaela had a follow up appointment with her cardiologist and we learned that the last of her premie issues has resolved. Resolved. Over. All those nightmarish months when we prepared for the worst, not sure if the girls would survive, and if they did what sort of lives they might have. Now, they are simply two happy, healthy, and dare I say adorable little two year olds.

No one knows what the future holds.

I hesitated quite a bit before posting this, knowing that it is a lot if information to digest. But I believe it is best to face the truth, and step boldly forward.

My next scan is on Friday, September 27. We will get the results on October 1, and if things are still working I will begin my next round of chemo that day. Thank you for all the well wishes, prayers, good vibes, FOOD, and endless love and support. I am so fortunate to have so many wonderful people in my life. You are all superheroes.

It's okay, even superheroes get tired sometimes!