My husband, Don, was diagnosed with non small cell lung cancer September 7, 2019. He was 54 at the time & has never smoked a day in his life. He did grow up in a house where both parents & most of his 5 siblings smoked. Both of his parents were diagnosed with lung cancer, though we’ve not been able to get any records related to it. His mom was 60 when she died 20 years ago. His dad had the tumor cut out of his bronchial tube & never had another issue. He died more than 10 years later of a heart attack. Interestingly, both of them quit smoking on the same day, 20 years prior to diagnosis. They were diagnosed with lung cancer 6 months apart. The lung cancer they had was attributed to Downwinders, meaning they lived in the path of the Nevada nuclear test sites in the late 50’s and until the year before my husband was born, certain cancers were attributed to that.
We were blindsided when Don was diagnosed with lung cancer (aren’t we all?). What he thought was severe constipation for a week ended up being a collapsed lung and tumors all through his pleural lining (primary), right lung, left lung, medial stinal lymph nodes and paratracheal lymph node. After a week in the hospital of trying to make his diagnosis be anything other than cancer, it was definitive. They did a biopsy & a million tests & we were sent home to wait for results.
The hospital “misplaced” the biopsy and caused a huge delay in his treatment. Mid October, when Don was admitted to the hospital for debilitating pain, the pulmonologist he had been seeing in the hospital, who told us that he had lung cancer, suggested that a blood biopsy be done simultaneously with a biopsy of the paratracheal tumor...just in case. While waiting for the results, nothing helped his pain. They tried every drug the hospital had. They called in every anesthesiologist to try to alleviate his pain. They did experimental nerve blocks. Pain pumps. NOTHING worked. 15 days of nothing touching his pain. Then finally, the blood biopsy confirmed BRAF. The oncologist put him on Tafinlar/Mekinist & his pain was 90% gone the morning after the first dose. It was incredible! He was able to go home on Halloween. The blood biopsy came back before the tissue biopsy results, which eventually confirmed BRAF.
During Don’s hospitalization a radiologist friend called & said that he would call in a favor for us at Banner MD Anderson if we were unhappy with Don’s care. Clearly nothing was going well, so we called in the favor. It turned out that our friend’s uncle was the Chief Medical Officer for Banner & he was able to get us an appointment for early November to see Jiaxin Niu, a research oncologist at MD Anderson.
MD Anderson is 3 hours from our home. Our nephew drove us down (he’s a firefighter paramedic & Don was incredibly sick & on oxygen) and we met with Dr. Niu. He explained how grave Don’s condition was & essentially prepared us for things to get much, much worse. He noted that he would have started with chemo/immunotherapy but since Don was already on Tafinlar/Mekinist & seeing resolution of his pain he would keep him on it.
Then in November, he was back in the ER for what we now know were Tafinlar/Mekinist side effects. Rigors, extremely high fevers and they thought he may have sepsis. He was in the hospital another week. Between September 7th and November 30th Don spent 22 days in the hospital.
Things started to turn around after that stay & switching oncologists. The rigors & high fevers continued every 3-4 weeks & we learned how to deal with them. Don went back to work January 22, 2020. He was off for We saw Dr. Niu every 3 months with PET scans & bloodwork & things were going along fairly well until July 2020. All of a sudden his rigors were 3-4 DAYS apart. He felt miserable all the time. A PET scan showed progression, which was a blow. Dr. Niu switched him to Braftovi/Mektovi, which our insurance denied. After many, many denied appeals, Dr. Niu was able to get Pfizer to give us the medication for free (it’s about $55k a month). This took 6 weeks, during which he stayed on the Tafinlar/Mekinist.
The main side effect of the Braftovi/Mektovi, we discovered, was iritis. It’s a pretty serious eye condition that is incredibly light sensitive & painful. We worked closely with our eye doctor to monitor & manage the symptoms. Then a PET scan December 31, 2020 revealed progression. Dr. Niu wanted to do a biopsy of the paratracheal tumor (it’s the easiest one to get to), which was done towards the end of January. The biopsy still showed BRAF. The February 25, 2021 PET scan revealed additional progression. So now his pleural tumors were returning, he had a tumor in his pelvis, one in his liver, several in the right lung. It was another devastating blow.
March 5, 2021 Don started chemo. Carboplatin/Alimta/Keytruda every 21 days. We drove to MD Anderson for every treatment. The May 25, 2021 PET scan showed that he was responding incredibly well to treatment! Dr. Niu could not say if it was because of the chemo or the immunotherapy & took a risk & put him on Keytruda every six weeks.
At the July PET scan, things were still looking good but Dr. Niu had a trial through Genocea that he thought would be an option for Don. He had another biopsy, tons of bloodwork, apheresis, and a CT scan. The CT scan showed resolution of all but the paratracheal tumor!
In September, Don had serious pleural pain and we scheduled another PET scan to make sure that his pleural tumor wasn’t returning. It showed only the paratracheal tumor, which was excellent news! We also found out that the biopsy that Don had did not collect enough tumor cells for the study and he was disqualified. That was a bummer because you always want to have something in your back pocket. But Dr. Niu smoothed that over saying that Don is responding so well to the Keytruda that he is pretty hopeful that Don can go into full remission.
Here’s what I’ve learned during this really hard 2 years: as a caregiver you have to be a fierce advocate. My husband could not wrap his head around his diagnosis & was just trying to survive. So all of the research, care, calls to providers all fell to me. People attribute his success to his will to live, and while that plays a part for sure, the amount of fighting I had to do to get him the care he deserved played a huge part. Don’t give up. Don’t take every answer as the gospel truth. Research. Connect with the amazing BRAF community. I find so much helpful advice from other patients of BRAF, so even if you’re “just a caregiver”, make the time to connect. You won’t regret it.
Kirsten Mead
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