Profiles in Lung Cancer: Naomi Farley, Caregiver
Profiles in Lung Cancer: Naomi Farley, Caregiver
Lung Cancer Awareness Month 2015
Day 4: Naomi Farley, Caregiver
“Hope is so important...”
November is Lung Cancer Awareness Month, and each day a lung cancer blogger will share a profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.
I knew that I wanted to interview Naomi Farley when I saw that she is a caregiver and that her husband Corky is in a clinical trial. When I talked to her on the phone and read her answers to my questions, I discovered that there are parallels between Naomi and Corky’s life and the life that my husband Robert and I share. Both couples have been together about 40 years, and each family has a child mid-20’s in age. Corky and I share the same EGFR driver mutation, and both Corky and I have retired due to our lung cancers. Finally, Corky and I are in the same clinical trial, a TIGER trial testing the efficacy of CO-1686, also known as Rociletinib, for EGFR patients who have developed a T790M mutation during treatment. Corky's trial is at USC Norris and mine is at Roswell Park, a continent apart from each other. He’s in cycle 10, and today I’m on the road to Roswell Park for day one of cycle 8.
Naomi’s connection with lung cancer:
I am my husband Corky’s caregiver. Corky was a coach running an after school athletic program when he was diagnosed with stage 4 adenocarcinoma. He has never smoked in his life. Our oncologist tested him right away for a genetic mutation, and found he has the EGFR mutation. Corky went on Tarceva as soon as we had his biopsy results. Tarceva was effective for 2 1/2 years until earlier in 2015 when he enrolled in the Clovis CO-1686 clinical trial. He is now in Cycle 10 of the Clovis trial (end of October 2015) and doing very well.
What is a typical day for you and your husband?
I go to work as a mortgage banker and my husband gets up, checks blood pressure and blood sugar and then takes his first dose of the day. He journals his meds and vitals. One to two nights a week he coaches an adult basketball league but he is retired and has not worked with kids since his diagnosis. He is a night person, so he’s up late at night reading, researching online and watching sports.
Tell us something we might not know about you and Corky:
There is always some kind of game on at our house: baseball, basketball, football, golf, track and field. If we want to watch a movie it's going to be after the game(s).
What do you want us to know about lung cancer?
The initial diagnosis is such a shock and very frightening, but we want people to know that with the rapid development going on with target therapies and immunotherapy it becomes more of a long term disease management lifestyle. And we hope that people getting diagnosed today learn of these options quickly as we did, because hope is so important when one is diagnosed with LC and it is stage 4. No one deserves this. My husband never smoked but still the assumption from outsiders is that he must have. We have learned how difficult it is to raise awareness of lung cancer due to the stigma.
How do you and Corky divide the work that comes with managing a serious illness? Who does the research, takes care of record keeping, and asks the hard questions of the medical team?
We share the work involved with this diagnosis. During the period when the doctors were staging his adenocarcinoma, he developed severe pain due to bone metastasis and was on morphine for 4 months. He went from being an active coach running an after-school athletic program to a week of hospitalization for pain management and then finally stability after treatment with a targeted therapy. This returned our lives to a new normal. He was not able to continue coaching and spent several months in a fog. As a result I managed the initial record keeping, but he soon recovered, recorded all of his meds, and started asking questions, reading, and researching. He wants me at all of his doctor appointments to help take notes and ask questions of the doctors because there are so many details to remember. We work as a team. I think it is so important for the doctors to hear from the patient, but I do a lot of gentle "filling in".
Tell us what it’s like to be in a clinical trial. How did you find out about the trial that your husband is in? What hoops did you jump through to get started? What is a typical day at the trial clinic like?
Being in a clinical trial is hectic at times but we are so grateful to be in it. We are also very conscious of how lucky we are to be close to USC Norris. We first heard about the trial from an acquaintance but at that time the first targeted drug was still working and the trial was not available near us. After 2 1/2 years on Tarceva, our doctor said that Corky’s options were to go on a chemo cocktail every 3 weeks or wait a little longer for the trial to open at USC. The decision was left to my husband and he held out long enough to have another biopsy, which showed that he has the T790 mutation needed to qualify him for the trial. He entered the Clovis trial in early April 2015. I think many people would have been nervous about waiting (I was), but my husband Corky's courage paid off. Having another biopsy is a leap of faith that participants in clinical trials must go through. The doctors thought it likely he had the right mutation but it cannot be guaranteed. Hopefully in the not-too-distant future there will be blood or urine tests that will reveal mutations rather than requiring biopsies. There is a lot of fantastic research going on.
The first several weeks we were back and forth to the clinic often. Again, we’re so fortunate to live close by. We were told the specific trial he is in closed a few months after he enrolled, so we continued to feel fortunate. Within a month of starting treatment he could feel positive effects with no more severe coughing. Our first scan showed significant shrinkage, however since then the scans show stable rather than shrinkage. But stable is good. There are lots of side effects that are different from Tarceva’s side effects, but with persistent stable results we continue to feel grateful.
A typical day at Norris starts at 7 AM with 8 hours of fasting prior and a stop at the lab where they draw 10-12 vials of blood. Then we see the doctor and research nurse. Vitals are taken, discussion of how he is feeling along with any side effects are noted, and then he is hooked up to the EKG machine. Once that is done we head out to a nice garden area to eat, take the morning dose and wait 2 hours. Then back we go to the clinic for another EKG before getting our supply for the next 3 weeks and heading home. The entire process usually takes 4 to 4 1/2 hours.
We are now seeing the doctor every 3 weeks. Scans are every 6 weeks up until cycle 10 so every other clinic visit had a scan visit in between. You never know what side effects will develop. My husband developed bronchial spasms in reaction to the contrast dye given during CT scans after many, many scans and now has scans with no contrast. We just passed the 3 year anniversary of his diagnosis and are very grateful for the fact that he has been on targeted therapies from the beginning. Last week we found out the scans will be less often from now on.
Everyone at Norris is so upbeat and positive and kind. Even though we are surrounded by people facing incredible challenges, there is hope everywhere around us.
Research and our oncologist’s calm assurance that if this stops working we will try something else. Learning about others who are living with this diagnosis.
What is your Twitter handle? I’m Nay on Twitter, and my handle is @ChancesR3.
Yesterday’s post in this series was on Lisa Goldman’s blog Every Breath I Take.
Tomorrow’s post will be on Dann Wonser’s blog Dann’s Cancer Chronicles.