By Michael McCarty, lung cancer survivor and advocate
Michael in a meeting on the Hill, September 2014
It was a hot day in early August, 2012 and I was out running and ran into some friends on the road and decided to join them. I knew for the last several months that my running pace was off and my workouts were less than to be desired but I kept thinking I was simply lacking motivation after running a half-marathon earlier in the summer.
As the four of us started off, I called on my body to push itself and set a healthy pace but my body had no answer and its silent stubbornness left me frustrated. And after falling behind from the group, I stopped running and started walking. My friends were kind and tried to reassure me that the heat was the cause. However, I knew better. And less than a week later, I felt a lymph node to start to pop out on the right side just above my clavicle.
After x-rays, CTs, several doctors’ visits (the doctors knowing I wasn’t a smoker and in good shape could only believe that I had some type of pulmonary infection) and a referral to a pulmonary specialist who couldn’t see me for another eight weeks, I was able to get a general surgeon to do a biopsy on the lymph node.
I will never forget the day he called me into his office to tell me I had lung cancer and it was advanced. My wife and I left the doctor’s office and we sat down in the first chairs we saw and I then pointed to the survival rate I had written down on a piece of paper and I started to cry. And for the next month, I was lost in a fog of anxiety, fear and anger as to why this was happening to me – a 43 year old runner, a lifelong non-smoker, a husband and a father of three. Prayer seemed to be my only comfort.
I was originally diagnosed as Stage IIIB (adenocarcinoma of the lung which quickly became deemed Stage IV). As to no surprise, I was deemed inoperable but was able to get into a trial at MD Anderson. After 11 doses of chemo and 38 trips to the proton center, I received the glorious news that I was NED. This lasted for about 11 months until I went into the hospital with double pneumonia.
There I discovered I had pleural effusion, pericardial effusion, nine (9) cm mass in the right upper lobe, nodules on the left lung, cancerous tumor on the spine, cancerous lesions in the eyes, many lymph nodes lighting up throughout my chest, and two lymph nodes pushing against my esophagus preventing me from eating.
Even though I made it home, I was in tremendous pain, on oxygen 24/7 and during a short month’s time I lost 40 pounds. My local oncologist gave me months to live as the cancer was spreading and spreading quickly. However, I was tested for the second time for the ALK mutation. This time, I unequivocally tested positive for the ALK fusion.
I was placed on XALKORI (crizotinib) and within a week, my pain was gone, I was off oxygen, and felt well enough to get into the gym (although only for a very light workout). Within weeks, my family and I were vacationing in the Keys giving God praise for what we call the “Magic Pill”. My first PET scan showed no evidence of my disease and my last scan confirmed that I remain NED.
My doctors cautioned me that I am not in remission but merely suppression. Call it what you wish, I have been given time, precious time, and during this time, now two years and counting, I want to help organizations like Lung Cancer Alliance to develop awareness about lung cancer and ensure that lung cancer receives equitable funding for research. Through research more drugs, like crizotinib, can be developed and hopefully not just providing survivors like me suppression but real life sustaining remission.
So get involved and set yourself free by helping others fight and beat this horrible disease. We too can build an army of survivors.
Hello Michael. I just read this story and see some similarities with my husband. He is a runner and was diagnosed in September with nsclc 3a. He has gone through chemo and radiation and is now in an immunotherapy trial. We have rarely seen or read about anyone that is a runner with lc. My husband’s treatments seemed to have gone better in some ways (chemo/radiation) and not so well (first dose of immunotherapy) in part, I believe, due to his level of fitness. Just wondering how you are doing and if you encountered similar results as a part of your own treatments. BTW, he has continued to run throughout everything. I hope you have had continued success with your treatment. Thank you, Anne
My son, 27 years old, also a runner was having trouble keeping his pace and would cough a lot at night. He finally went to the doctor (thanks to his wife) and was diagnosed with Stage 4 with Alk mutation. He started taking Alectinib about a month ago and cough is much better. He’s even planning on running a marathon in December. I know that with targeted therapy your body eventually grows a defense, but praying that there will be something else when that happens.
There is a private face book page called ALK POSITIVE if anyone wants to join. The support and information this group has is amazing!
There is an Alk positive Private Facebook page with lots of ALK patients who give support and lots of information about this cancer. If you are interested
I have a different type of cancer, but my local oncolgist told me I had only months to live . That was two years ago. That is when I went to MD Anderson and doing fine so far.
Yay! 43 yr old. You have inspired me. I have stage IV lung. Has metastasized to my breast. They just put me on xalkori. Last night I took my first one. I have a different outlook on this whole thing after reading your story. Thank you.
Keep up the strong fight, Emily! If you have questions about your lung cancer or just need someone to talk to, please contact our HelpLine at 1-800-298-2436 or email support@lungcanceralliance.org. Sending positive vibes your way!
Hi Michael, keep positive!
I was diagnosed with NSCLC stage 4 (metastasized to the bones), this was discovered after I had a fractured vertebrae. I had to have surgery to stabilize the spine (7” of rods and screws. One month after surgery I had radiation for the spine. Three months later I started chemo. I also had radiation for the left side of the skull, sternum, hip, femur, pelvis and a couple more for the spine. After 9 months of chemo, I was told that the chemo was no longer working as there was progression in the bones (oddly, I haven’t had any symptoms where the lung is concerned). I then started on immunotherapy, again after 9 months I was told it was no longer working. My oncologist referred me to one of her colleagues who is working in a different hospital, she works on clinical trials. After doing blood analysis, she told me they identified the mutation gene and that I could start treatment with Xalkori. I started 3 days ago, I can’t believe how quickly this has made a difference! I am no longer in pain, I am walking normally, I can go up the stairs without any problems (two weeks ago I ordered a stairlift, it will get installed next week, hopefully I will never have to use it!) I’ve stayed positive throughout all these challenges and will continue to stay positive and live my life to the fullest! Have faith, have hope!
Hi my mother diagnosed with metastatic adenocarcinoma Lung primary. She has bad plural effusion and chest tube is placed on her with drainage which drains fluid. She had one chemo which did not made any difference she caught infection and fluid turned into pus. She had to go under small surgery to cleanse the pus. She was tested for ALK positive which was the only hope we had. And our Oncologist in Pakistan prescribed Crizotinib which was extremely difficult to get and extremely expensive. We have managed to buy one month does in Indian make Crizotinib. As we could not afford to buy Xalkori. She has started to take pill but her plural effusion remains the same no difference to her condition as yet. We are very hopeful that this drug will work and stops her plural effusion which has made my mother’s life extremely difficult and painful. Reading all your experiences gives me hope.
We will keep your family in our thoughts, Ali. We do not currently offer our services internationally, however, if you’re looking for additional support we would recommend contacting Pfizer Pakistan (linked here: https://www.pfizer.com.pk/). We will be keeping you and your family in our thoughts at this difficult time. Sending positivity your way.