Felt it was time to give some updates on Inspire, hoping to help Inspire the recently diagnosed. First, my background and experience with lung cancer. Then, what I've learned that might help others survive.
I was "informally" diagnosed June 18, 2010 when I had a sharp pain in my back that initiated a call to my primary care doctor, Dr. Beth Carlson. She told me to come in immediately and then set me up for an immediate ultrasound at a local imaging facility. They found fluid in my chest so Dr. C ordered a follow-up X-Ray which showed a spot on my lung. She asked me to stay for a CT scan and of course, that found the tumors on my pleura in addition to the main one, plus the pleural effusion. I asked Dr. C if it was cancer and she didn't back off, telling me that it didn't look good. All of this was confirmed later as Stage IV NSCLC, adenocarcinoma by my local pulmonologist, Dr. Orlando.
My brother was a surgeon in Texas at the time and told me that if it was him, he would go to MD Anderson for treatment, which is what I did. Since I didn't have my tumor biopsy there, I also didn't have mutation testing on the tumor. My mutation testing was done on the fluid drained from the pleural effusion. It did not show any treatable mutations, so I continued on a combo of carboplatin/alimta/avastin for 6 infusions every 3 weeks. It stabilized the cancer and held the pleural effusion in check, so I went from there to Alimta maintenance every 3 weeks. I had my infusions at the Lee Moffitt Cancer Center in Tampa and continued with my doctor at MD Anderson.
After the Alimta became ineffective, my new doctor asked if I would like to try Tarceva, for people with an EGFR mutation and I rejected that option because my mutation testing was negative. So he suggested a 6 round series of Docetaxel (taxotere) infusions. This was successful in reducing disease after 6 infusions, so he suggested doing 2 or 3 more.
And then I broke my left ankle and snapped a nerve to my foot, by slipping when making the bed. It require me to keep my legs up for a couple of weeks, and then using crutches or a wheelchair. I was not feeling great from the chemo and this was a downer. The trauma and chemo combo resulted in my having a permanent problem with the lymphatic system drainage in both of my lower legs and neuropathy in my feet. After the 6th infusion, I started retaining water and my albumin and protein levels dropped.
I continued on Docetaxel, going for another infusion Dec 29, 2011. I was huge and had to buy some bigger clothing just so I had something to wear. On New Year's Day I did not feel well. I awoke about 4 in the morning and couldn't breathe. (My lungs had filled with fluid.) I told my husband to call 911 and sat up by the door waiting for the rescue unit. They started an IV and gave me some oxygen, but it barely helped. I passed out in the ambulance. When I finally got to the ER, George told them that I was a cancer patient and what had happened. They put a respirator on me which felt wonderful. My terrific pulmonologist was on duty that night and he put me on Lasix IVs and Potassium to start draining the fluid from my body. I had gained 20 lb. of fluid. I was in the ICU for a night and then the hospital for another week. The doctor discharged me due to worry about my ability to fight off disease at the hospital because I had such low red and white blood counts.
As I left off, I was confined to home for two weeks with neutropenia. I had to avoid all fresh fruits and vegetables as well. Then for the next few weeks, I wore a mask when I ventured out. It took two months for all of the fluid to be urinated out of my body as I continued on oral lasix and potassium. At my doctor's suggestion and my total agreement, I went without treatment for a total of 4 months in order to get my blood chemistry back to normal. During that time, my tumors grew and Lit up and I had two thoracenteses to drain my now recurring pleural effusion which had gone away with chemo. Mutation testing done on that fluid also showed no EGFR mutations.
I also had "drop foot" from severing the nerve to my foot which didn't allow me have a proper stride. I walked with assistance from a cane for about a year until the nerve (luckily) grew back and restored my ability to walk without drop foot.
At that time, I knew I wasn't going to start treatment for another month and said, "I want to go to Italy." So we did and even though I struggled with the fluid on my chest, and painful leg, I had a wonderful time. I think all of the walking helped my ankle/foot heal faster, but trudging up subway stairs and the climb to Montepulciano was challenging, but also uplifting. It was great for my morale.
When I returned, I saw Dr. William in Houston and this time when he recommended Tarceva, and I said, "but I don't have an EGFR mutation. HIs response was to just try it and we would know in 2 months if it is working or not. So I agreed and the next scan showed a significant reduction of disease and a couple of scans later, a complete resolution of disease. It was miraculous. I stayed on Tarceva for 24 months, although I had slight progression after 18 months. During that last 6 months, I was surprised that there was very little additional progression. I lost most of my hair with chemo and Tarceva just turned my remaining wisps into a frizzy mess. Thank God for wigs.
One reason I stayed on Tarceva was because I was trying to get into a new trial for CO1686 for patients who had progressed on Tarceva. I appreciate how Dr. William advocated for me to be included when it seemed all positions were filled. I had some reduction of my main tumor the first scan, but I felt terrible. I was on the drug for 4 months and during that time I had hyperglycemia (blood sugars ranging up to 400), had to take meds for diabetes and finally insulin shots.
I also had such severe body spasms that I believe an abdominal spasm actually bruised my lung resulting in a painful episode of pleurisy. Due to the pain, it was suggested by my primary care doctor to have a CT angiography to rule out a pulmonary embolism. I have bad veins and was told there would be someone at the CT scan who could access my port. But she had gone home. I suggested that I return another time, but the nurse cautioned that if I had a blood clot, it could be too late. So I regretfully consented to have the contrast shot into my arm and after about 3 seconds, I was screaming for them to stop. The infusion at such a high rate ruptured the vein in my arm, swelling and bruising it from wrist to armpit for a couple of months. It also required me to change my diabetes meds. Finally, I was terminated from the trial due to significant progression. My main tumor went from about 2 cm to 4 cm. I was going to quit if I hadn't been cut because the overall feeling of sickness was terrible and I was tired of having out of control diabetes. The only good thing was that I lost 15 lb. on the diabetic diet.
Dr. William then suggested trying Afatanib (Gilotrif) even though I had progressed on Tarceva. I returned in 5 weeks for a scan and had really good results. The damage from CO1686 was just about eliminated. I started on 40 mg. but due to very bad D after the second month, I went down to 30 mg. I had some progression after about 10 months but stayed on it for 14 months to get as much time as I could. My biggest problems with Afatanib were parenychia, a constant infection of my fingernails or toe nails. On Tarceva, I had two toenails removed and the half of one removed, but Gilotrif affected my fingers more and I had multiple treatments on them. Shots of lidocaine in your fingers and toes are pretty painful, but brief, and much better than the constant pain of infected tissue surrounding nails. Hair started growing back with Afatanib too.
My good luck continued because just as Afatanib failed, Tagrisso was approved and Dr. W started me on it December 15, 2015 and am still enjoying its mild side effects. I'm praying that it works for a long time. I had slight progression in January but my March scan showed tumor reductions and I haven't had a pleural effusion of any consequence since I started Tarceva. I even have hair again. Entered May 4, 2017
WHAT HAS HELPED ME SURVIVE FOR 7 YEARS: What I've learned over the past 7 years is that first, you have to have good or great insurance or be quite wealthy in order to be a survivor. I have great insurance. Then you need an excellent thoracic oncologist, like mine, who cares whether you live or die. I believe going to an NCI approved facility can improve your chances of survival, with exceptions for some well-known stars in the field. At least get a consultation for a second opinion. I've had the support of loved ones to help me through the rough times - both emotionally and physically. The other positives - friends who prayed for me and lifted your spirits - the birth of a grandchild - wonderful trips - and taking joy in everyday living - have been motivators and morale boosters. Plus, Inspire has been essential in terms of support and knowledge from all of those who contribute. I feel connected to everyone on this site. When they pass away, it hurts. And when they have successes, I'm elated. Cancer isn't for sissies but we all need to know someone else cares about our struggles.
Thanks to all for acknowledging this lengthy journal and sending me your warm thoughts