lorlatinib – Page 4 – polepole ~ breathe

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.

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.

What will tomorrow bring?

Today is the end of cycle 2 of the Lorlatinib trial for me. Each cycle is 21 days. Labs, EKGs, and oncology visits are every three weeks; MRIs and scans every six. Tomorrow will be my first scans and brain MRI since beginning the targeted therapy drug Lorlatinib (compliments Pfizer and Dana Farber Cancer Institute). After 16 glorious months on Crizotinib, it became evident that my dear friend Criz could no longer protect my noggin. But, miracle of miracles, a clinical trial appears tailor made just for my circumstances. Lorlatinib not only targets ROS1 (my cancer mutation) in the body, it treats the brain. You see, since March 2017 there has been increasing “enhancement” in my meninges on the MRIs of my brain. So, the change was made and tomorrow is the day to see how this new friend, the one with few side effects beyond making me chubby, is doing.

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