A Non-Small Cell Lung Cancer Survivor Shares Her Story

March 2, 2021
Darlene Dobkowski, MA

CURE, Winter 2021,

Advocacy Groups | <b>Lungevity</b>

A young mother and athlete discusses receiving a shocking diagnosis of stage 4 lung cancer and her incredible response to treatment with a single, targeted drug.

In September 2016, Tabitha Paccione was an active 35-year-old who competed in endurance events like Tough Mudder and 10K races in addition to caring for her 11-year-old son and 8-year-old daughter. She was also a full-time first-grade teacher, so when she developed a persistent cough, she attributed it to her profession. She visited her primary care provider several times for the cough over a 10-month period, and the focus shifted from bronchitis prevention with antibiotics and cough medicine to an inhaler and steroids for allergies after a chest X-ray came back completely clear.

“It still was getting bad, and at this point, it was pretty bad,” says Paccione. “There were nights when I would wake up and I would be choking. I just couldn’t control myself.”

At her third primary care visit, the doctor told her that it must be acid reflex, which Paccione thought could be a stretch but trusted her doctor regardless. Over time, her cough was accompanied by tremendous back pain, which she originally thought were muscle spasms from weightlifting. Her primary care provider prescribed Paccione muscle relaxers and pain medicine to alleviate the pain.

The straw that broke the camel’s back, Paccione says, was when she became breathless after walking up four stairs during a date night with her husband.

“At that point, I (thought), ‘OK, there’s something desper- ately wrong because I run 10Ks, and now I’m going up four stairs and I can’t catch my breath. And so that kind of scared us,” Paccione says.

She also noticed that she was becoming increasingly tired after working four-hour workdays as a summer school teacher. She was taking eight-hour naps after coming home, yet still felt awful. Because she felt something was seriously wrong, she pushed for her doctor to perform testing.

Test results showed that she had a 5-centimeter mass in her left lung and stage 4 lung cancer, which had spread to other areas including her brain, bones, liver and lymph nodes.

“It was devastating because, honestly, other than those few symptoms that could be attributed to other things, I felt fine,” Paccione says. “There’s no way I could have lung cancer. I never had any history of cancer on either side of my family. I was healthy. I’ve never smoked a day in my life. And, I mean, I was young. How do I have stage 4 lung cancer?”

No Time to Waste

Paccione had biomarker testing performed at the advice of her doctor because the cancer was progressing so quickly. At that time, it typically took three weeks for the results. Because her doctor was worried how much the cancer could progress during that time, Paccione underwent one round of chemotherapy (carboplatin and Taxol [paclitaxel]). Once her biomarker testing came back and indicated that she was ALK positive (meaning her ALK gene had fused with another gene, resulting in a mutation that can cause cancer, and is found in about 5% of non-small cell lung cancer), Paccione’s doctor decided to treat her with the targeted therapy Xalkori (crizotinib), developed for patients with metastatic non-small cell lung cancer.

Compared with chemotherapy, during which Paccione experienced side effects such as hair loss and severe neuropathy, Xalkori provided her with a more positive experience.

“My hair grew back. I was able to go back to work. I felt great,” says Paccione. “I had energy again. I wasn’t suffering from any neuropathy anymore. ... I felt really lucky to be able to be on the targeted therapy because the side effects were so much more manageable.”

After taking Xalkori for three months, Paccione underwent her first post-therapy scan, which showed that she was having a complete response to the therapy, with a 60% reduction in the primary mass and responses in her lung, lymph nodes, liver and bones. Because the brain metastases showed no improvement (Xalkori cannot penetrate the blood-brain barrier), Paccione also underwent two rounds of stereotactic radiation.

“But as far as my body was concerned, it was a complete improvement,” says Paccione. “I went from not being able to say a complete sentence because I would not be able to breathe and (would) cough uncontrollably, waking up in the night, sometimes throwing up because I couldn’t stop coughing, to not coughing at all, being able to walk again and breathe, and not being completely out of breath after taking a few steps. It was shocking because you always hope for the very best, but you’re also very cautious as to what you allow yourself to (hope) until it happens.”

Paccione emphasized the importance of a strong medical team, which she attributes to her treatment success.

“You’re in the fight of your life, so you need to make sure your medical team is right,” she says. “(My doctors) are just phenomenal not only in the sense that they’re just very brilliant and very well versed in lung cancer, but emotionally and mentally, I feel safe with them. I know that they’re going to fight for me.”

Targeting Brain Metastases

Paccione was treated with Xalkori for exactly one year before switching to Alecensa (alectinib) in October 2017 in an attempt to penetrate the blood-brain barrier, since the metastases in her brain kept returning. Her next scan showed that all the brain lesions had disappeared, enabling Paccione to forego the next treatment option: brain radiation.

Paccione is still taking Alecensa, four pills twice per day. This treatment allows her to work full time and participate in the lives of her children, who are now 16 and 12. As thankful as she is for her positive response to the treatment, Paccione understands that everyone may not have the same experience.

“The side effects are minimal, and I know this is different for everyone,” Paccione says. “I will stress that not every single person feels exactly like I do. It’s different for everybody, but I have great energy. I can breathe. I don’t cough anymore. Sometimes I get tired, but I think that just comes with the territory of being a mom, too, and doing everything else.”

Less Worry, More Living

Compared with chemotherapy, this monotherapy allowed Paccione to not be sick and in bed. “Maybe (you) have the quantity of life when you’re on chemo, but the quality really isn’t there,” says Paccione. “You can’t sleep at night. You can’t really eat anything because you’re nauseous. You’re tired all the time. And you can’t go out and do anything because you’re so susceptible to (getting) sick.”

Paccione credits the research to develop this monotherapy for giving her the opportunity to watch her son play water polo and to attend birthday parties with her daughter.

“These treatments are saving our lives. They’re giving us time,” says Paccione. “Lung cancer is not a death sentence anymore. Thanks to all the research and to (this) monotherapy ... we have more time. When I was diagnosed in 2016, I was told that I would have between three and six months. And so I spent so much time worrying about the future and worrying about whether I needed to write these birthday cards to my kids for all the years that I wouldn’t be around. Thanks to these therapies, it’s been four years.”

In October 2019, Paccione was told she was in remis- sion — something she thought would not be possible. After everything she’s gone through, and the perspective
it brings, Paccione advises and encourages every patient and survivor to share their stories to help others. Hearing someone else’s story early on in her own journey with lung cancer would have been beneficial, says Paccione.

“When I was diagnosed, I didn’t know anyone that had lung cancer, and it’s an overwhelming ... isolating feeling,” she says. “But I remember the very first time I met one of my friends that has cancer. I remember looking at her and thinking, ‘Oh my gosh, look at her. She has three kids, she’s working and she’s advocating. One day, I really want to be like that.’ Now here I am, and the only reason I share my story is because I want to give that next lung cancer survivor the help that they need to push forward and to live their lives.”

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