Do you have lungs?

Spread the word – if you have lungs, you can get lung cancer.  And, it creeps up on you, disguised as anything but lung cancer.  At least that must be what it does, because so many of us are diagnosed at the metastatic stage.  Why health care professionals don’t think of lung cancer when seeing a patient with symptoms such as a little cough cough that won’t go away, I just don’t know.  So spread the word.  Pay attention to your body.  Be demanding of your PCP.

In an attempt to spread the word, I was interviewed by a local paper.  Below is a link to that article and then the text of a letter to the editor that I sent as a follow-up.

Interview of me

Letter to Editor, Weekly Packet, Sept. 2017

Thank you to Monique Labbe for her thoughtful article on an unexpected turn in my life, lung cancer.  Ms. Labbe conducted a kind, compassionate interview on a difficult topic, while surrounded by the laughter and play of several nine to eleven year olds.

I’ve immersed myself in learning on this topic.  There are a few important “take aways” that I believe every breathing person should know:

  1. If you have lungs, you can get lung cancer.  The stigma associated with lung cancer and smoking impacts lung cancer education and research funding.  It also causes us to ignore the subtle symptoms, leading to many being diagnosed only when the cancer is metastatic.
  1. Lung cancer kills more women yearly than breast, uterine, and ovarian cancer combined.  For more information about lung cancer patient support and advocacy visit the Bonnie Addario Lung Cancer Foundation lungcancerfoundation.org .
  1. When you have a tumor biopsy, ask for genomic testing.  If a cell mutation,  a genetic driver is found, your oncology team may be able to treat your cancer with a targeted therapy, instead of the cancer with a more general treatment plan.
  1. Don’t be afraid of clinical trials.  This field of research is moving at an amazing pace.  Being a part of the research gives one hope, for oneself and the future.
  1. Cancer (any chronic disease) impacts more than the patient. It seems unavoidable that it takes an incredible toll, financially and more so emotionally, on the entire family.  Caregivers need support perhaps even more than the patient on this rollercoaster of a journey. 

I’m very grateful that I’m able to be treated at Dana-Farber Cancer Institute, where I’m currently in a clinical trial studying a targeted therapy drug that treats ROS1+ lung cancer that has progressed to the brain (in my case brain meninges). We’re hopeful that it will extend my life for a very long time.  The well wishes and prayers on our behalf from so many in our community are a great source of strength.

Respectfully,

Corinne C. Pert

Symptoms, side effects, or just part of living?

Sorting out what is caused by what, and when to be concerned or not, is tougher than you might think.  For example, everyone has headaches, but headaches caused by cancer progression to the brain, at least in my case, feel different and aren’t helped by ibuprofen , Tylenol , migraine med, or acupuncture.  I knew they weren’t migraines because I used to be tormented by migraines.  That was before acupuncture! Luckily for me, the cancer headaches weren’t bad, just chronic and different – a symptom of cancer, and as the new drug attacks the cancer, they’ve resolved.

Recently I’ve been plagued by serious hand neuropathy .  Now, that could be a symptom as it is caused by the Central Nervous System , and the meninges where my cancer progressed to is part of the CNS.  But, it’s not.  It’s a side effect of my clinical trial targeted therapy drug Lorlatinib.  And, to make sure of this, I was off the drug for a week.  Yup, relief came at day two.  So now I go back on at a reduced dosage.

Other examples include my new high cholesterol (side effect of Lorlatinb), and the body aches which I think are a side effect of the statin that I’m taking for the high cholesterol ! Or, perhaps it’s just regular sore muscles from aging or going back to the Y to work out.  Not sure, but not really much of a bother.

But it is really important to pay attention to the body and the subtle differences as they provide clues as to whether something is a symptom, side effect, or “normal”.  Here’s another example – When I was on crizotinib I could count on bouts of diarrhea every four or five days.  Solution? Imodium.  With Lorlatinib I had no digestive issues, and then a few weeks into the trial I began to have bowel incontinence.  Not diarrhea.  No explanation. Scary.  Because it could mean that the cancer was in my spine and messing with nerves to bowels.  Luckily for me, the first statin drug I was on didn’t work for the cholesterol and I was taken off it.  Why luckily?  Because it was causing the bowel incontinence we think.  It stopped a few days after stopping that med.  It isn’t a known side effect of that med and the Dr. was ready to scan my spine in my next scans.  But, no more problems with that!

Another side effect of Lorlatinib that I’ve not heard a solution for is weight gain.  Now that too is part of life, but in this case it really is a side effect.  How do I know?  Because I gained 9 pounds while on this medication for nine weeks, and I’ve lost at least five in the week I’ve been off it.  Now, I’m hoping that with being careful about diet, along with walking and working out, that I’ll be able to control this weight gain.  But I’m not going to beat myself up over it anymore than I did the high cholesterol . Out of my control.

Today I went back on that reduced dose of Lorlatinib.  I’m really hopeful that it will not cause neuropathy at this dosage.  Two fellow ROS1ders have been through this and the lower dose worked for them.  My oncologist really pays attention to the balance of fighting the cancer and quality of life.  He was concerned about how the neuropathy was limiting what I could do and affected my sleep. We didn’t discuss options for if the lower dose still causes neuropathy.  Fingers crossed (and hope they don’t fall asleep)!

Gratitude and Joy

Every day I make sure to embrace the gratitude and joy in my day.  It’s very easy as I live in a beautiful place with the most wonderful people, and I have everything I need to sustain a truly fulfilling life.  Today my joy and gratitude is in thinking about everyone and everything that makes it possible for me to be here.  I’m thinking especially about the clinical trial I’m in.  Tomorrow we travel to Dana-Farber for my quick three week check-up (no scans).  Dan will drive, once there I’ll have blood work and an EKG, and then meet with “my” oncologist and the clinical trial research nurse.

I’ve little idea how this particular trial drug was developed, but it is one of now several targeted therapy drugs being studied for targeting ROS1 in lung cancers and other cancers.  Lorlatinib, the targeted therapy drug I’m on, hopefully does what crizontinib did for me in targeting ROS1, and then it goes where crizotinib seemed to not be able to – my brain.  In my case, my brain meninges. When you think that only 1% of lung cancer patients have ROS 1, it is mind-blowing to me that there is a clinical trial at my treatment center that is specifically designed for my situation: ROS1+ lung cancer, progression to the brain with first line of treatment.  A Study of Lorlatinib in Advanced ALK and ROS1 Rearranged Lung Cancer With CNS Metastasis in the Absence of Measurable Extracranial Lesions

I’m ever so fortunate to live close enough to Dana-Farber to be treated there. Participation in the trial is relatively easy for us.  Driving to Boston every three weeks is doable.  Clinical trials aren’t offered everywhere.   This trial isn’t available to many in my situation because they are unable to make the commitments necessary, specifically traveling to the clinic site of the trial. The Bonnie Addario Lung Cancer Foundation is working to address this problem and help to make trials more accessible for patients anywhere.  ALCF Centers of Excellence  Thank you to them for this advocacy work.

I’m so grateful for the researchers, the doctors, the patients in prior trials, and the countless others that I’ve no idea about who have and continue to contribute to this and all the clinical trials.  It gives me joy to know I am contributing to something that will help a patient in the future, whether it is living with lung cancer as a managed chronic disease through targeted therapy, immunotherapy, combination therapy, or advances in early detection or finding that real C word, cure.

The New “Normal”

I am ever so grateful for my ROS1+ FaceBook group and my fellow ROS1ders.  They are my greatest source of information, inspiration, and support (outside of my network of family and friends).  In addition to this group, I follow several blogs of fellow lung cancer survivors, groups, and foundations.  From all of these sources I glean varied things that help me in a multitude of ways.

After we began this cancer journey, and I’d completed radiation, started Xalkori and begun to regain strength, we were finally at a place where we could stop, take a deep breath (well, Dan could – not so much me…), and reassess where we were.  That’s when we began to hear the term “New Normal”.  I know it is meant to be a helpful term, I think it’s a way of saying that you can find normalcy in this world of cancer.  I think it helps people think of managing a chronic disease or living with metastatic cancer as a change in how things are done that can actually feel normal.

I’m fairly certain my first few months, as hard as they were, were much easier than many in my condition and situation because of Dana-Farber doing the genomic testing that found my ROS1+cell mutation.  Instead of chemotherapy , after my radiation I was given a targeted therapy drug, a pill taken twice a day.  So while Xalkori(crizotinib) was shrinking the tumor, my ribs were healing, my esophagus was recovering, and I was slowly regaining strength.  That’s when we tried to embrace this concept of New Normal.  Yes, we settled into new routines and adapted to the changes quite well.  Taking a backpack with a change of clothes, Imodium, and adult wipes with me whenever I leave home has become my normal.  Taking medication regularly, something I’d managed to escape in 58 years, has become normal. But, try as hard as I can, I do not think of our everyday life as normal.

Normal: (noun) the usual, average, or typical state or condition. (adjective) conforming to a standard; usual, typical, or expected.

We (my support system) do an incredible job of living life fully and finding joy in all the normal things of life.  Yesterday Dan and I had the chance to “high five” three of our four youngest grandchildren at a soccer event.  The fourth was playing baseball (we watched him last week and likely will next week).  Upon seeing a pic of her little brother playing soccer, our eldest grandchild spoke wistfully of “those times” while at college studying.  That’s all normal!  It’s what our family does.  And, Dan and I find lots of “normalcy” in our days at camp, seeing the sun rise and set, happy and in love as we’ve been for well over forty years.

Maybe I’ve made normal a “feeling” and it really shouldn’t be.  But I refuse to think of some aspects of this journey as normal.  Especially, not my normal. Things from the complex to the very simple.  For example, hurrying up the hill.  I’m convinced it is not normal to huff and puff going up our hill.  That may be what happens to me right now, but even for me, in my condition, it isn’t going to be my normal.  You see, I’m going to get these lungs in such great shape that I can run up that hill with no puffing!  Okay, so maybe that wasn’t as simple an example as I thought.  Here’s another – that cloud that hangs over you when you have metastatic cancer and you have scans every six to eight weeks to monitor medication effectiveness or disease progression.  Now really, does anyone consider having to deal with that normal?  Yes, it is now a routine that we’ve figured out how to manage without it intruding upon everyone’s daily life too badly, but normal?

All in all, we live a pretty ordinary life. It’s an incredibly rich life, filled with joy.  That has only been enhanced by this cancer journey.   My new normal?   Being present, joyful and grateful every moment of every day!

 

The “Fight”

People talk about “fighting” cancer, “courageous battle” with cancer, and similar terms.  I don’t really see it that way for me personally.  I don’t see myself as “fighting cancer”.  There’s a real battle going on inside me, no question, but my role is somewhat removed as I see it.

cancer crept into me and grew slowly over time.  (lowercase “c” intentional) It happened while I was in the best physical condition of my adult life.  Then, somehow (I’m still not clear how), this cancer guy named ROS1+ hopped into the cancer driver’s seat.  That lazy cancer that was creeping through me took off, with ROS1+ as driver, like the energizer bunny! Zoom!  Whoosh!  Doing donuts in my left lung and heading off to the liver land.  I don’t know how that cell mutation happened, and for my purposes now, it doesn’t matter. (Figuring it out for others’ future does matter, and I hope researchers at DFCI can learn from my journey.)  All I know is I was going along my merry way, climbing mountains and playing with children, when something happened.  And that thing, at that time, was good ole ROS1, putting the pedal to the metal.  Who knows how long I had gone merrily along my way with cancer growing in my left lung hilum, where some pretty important stuff happens, or how much longer it would have taken to show up if ROS1+ hadn’t jumped in.

Okay – the “fight” and how I see it.  I believe the fight is between my medication and the cancer.  My body is where the battles take place.  The many doctors (radiologists, oncologists, neurologists, pathologists) at DFCI are monitoring and assessing all the battlefields, and making decisions based on those assessments – they’re the generals.  (Ultimately I’m Commander in Chief, but I’m a wise person and they know what they’re doing!)

The generals sent in my first hero Xalkori Crizotinib, and she was brave!  She fought back cancer and I could breathe.  My poor little left lung re- inflated! Xalkori hunted down ROS1+, tied him up, and sat on him.  (Sorry, just sounds like a male name.)  ROS1+ cancer was still for months, a year even, until finally one night as an exhausted Xalkori slept, cancer tiptoed past the Blood Brain Barrier to my meninges.  No joke, that’s how I see this! Time for the generals to put their heads together for a strategy meeting.  The outcome?  The next weapon!  Lorlatinib.  It not only protects the body like my friend Xalkori, it boldly crosses the Blood Brain Barrier, hunts down, and attacks cancer as it sneaks around and around my brain, looking for places to settle.  The generals’ plan is that Lorlatinib will cause the cancer to retreat to a point where cancer is again contained and managed, never to escape again.  Just weeks into the battle I can feel the battleground shaking.  Lorlatinib is powerful!

Now, I’m not letting myself off the hook or being passive here – I have an important role too, just not in the heat of the battle, sword to sword.  That would be too exhausting,  to be in fight mode all the time.  My job is to strengthen the fortress, to give the generals and the warriors the best support I can so they may win each battle, and so, I don’t see it as “fighting” – on my part anyway.  My work is essential to the battle, and it is both joyful and exhausting.  Believe me, I want this cancer gone, but that’s not what’s expected, so I see this as a journey.  Medically, it is managing a chronic disease. I’m in it for the long haul, a marathon, not a sprint.  Likely more battles such as the ones described above will occur in my body, maybe many.  Hopefully a time of quiet management will come soon and last a long, long time, with the ever present sentries scanning the skies, land, and oceans of this body for cancer.  I will be living life, taking the best care of my mind and body that I can, supporting the work of DFCI and its staff.

Dr. Pasi Janne, Dana-Farber, and Bonnie Addario, ALCF

Below is a short video of my oncologist with Bonnie Addario, both heroes.  He is the head of Thoracic Cancer at Dana-Farber Cancer Institute.  She is a 13 yr lung cancer survivor who founded the Bonnie J. Addario Lung Cancer Foundation.  “The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. ”  The foundation is doing some pretty amazing work with/for the ROS1ders. (ROS1 Global Initiative)

Dr. Janne and Bonnie Addario

Phone calls

Funny thing thinking about phone calls and this journey.  It was that phone call on my cell phone in a restaurant that first caused alarm.  Thursday (8/24/17) afternoon, sitting in traffic on 95 north of Boston, we were waiting for a phone call.  Usually my MRI and scans have been read by the oncology radiologists and seen by the oncologist before my appointment last thing in the day on my TEST DAY (MRI, Scans, BloodWork).  This time, the first TEST DAY since being in the clinical trial and on Lorlatinib, the oncology radiologist wanted the neurology radiologist to look at my MRI before making a firm statement.  Everything in the rest of the body was the same (radiation scarring, but not tumor showing in the chest, and same tumors, but no bigger on the liver), and the radiologist and the Dr. said the brain meninges changes are so subtle that all they could say is that there wasn’t any worsening – good news. I am glad they were doing this, just anxious to leave without REALLY knowing.

So, here we were, headed home, with the news that MAYBE the med was working.  Luckily for us, the research nurse understood that we really needed to know, and she said she would call us as soon as the neurology radiologist read the MRI.  She did!  Sitting in four lanes of stopped traffic, chatting about all the cars with just the driver and how many people were texting while driving, my phone rings through the car system,  True to her word, as soon as she heard she called, and the news was not to be dreaded, but hopeful.  A partial response to the drug after six weeks, 40% reduction in the “enhancement”.  Time to cry in relief, and then move on.

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