I am happy to report that my latest scan was stable. Just in case I’m not paying attention, the radiology report noted “Multiple unchanged bilateral and ground glass semisolid nodules since 6/7/10, although significantly increased since 7/09, likely represent a multifocal lung cancer/BAC” The word significantly, though possibly accurate, seems unduly harsh. I prefer the final impression, which reads: “Gradually worsening multifocal lung cancer/BAC…”
At any rate, I can stay on the 1066 for at least another two months (it will be two years on trial October 1st). Yippee!
On Tuesday morning, Peter and I drove south for a two day sentimental journey to some of our favorite spots in Ipswich, Massachusetts. Peter spent the first ten of his thirteen years in Ipswich, and although he has a good life in New Hampshire, he misses the coast of Massachusetts dearly.
After picking up one of Pete’s long time friends, Durin, we stopped for lunch at a deli in the village. Ipswich being yet another small community, we immediately ran into another friend, Elizabeth, and her son Luke. They joined our small party. After lunch it was time for some chocolatte frappes from Zumis, a wonderful little coffee shop in Ipswich owned by our friend Umesh and his wife.
We joined up with Jemesii, who was able to spend a little window of time with us (that girl is always working).
And then, Crane Beach! Crane Beach was definitely one of the very best things about living in Ipswich. A mere ten minutes from our house, it was an unbelievable natural resource. Swimming in the summer; but also a lively (if sometimes brutally cold) place to walk and beach comb in every other season as well.
We stayed at the beach until the sun was quite low in the sky, and then we dropped Durin off. Pete was invited to bunk at Durin’s, so Jem and I enjoyed a girls only evening, including dinner out and the night in a hotel.
Jemesii had to head home in the morning. After I picked up Peter at Durin’s, we went to Elizabeth’s. Pete and her son Charlie hung out while Elizabeth and I hit the beach again for a long walk/talk. For lunch, we went to the famous Clam Box for fried clams, onion rings, french fries and cole slaw. So, so bad for you and so very yummy as well. We changed into our swimsuits and returned to the beach for a couple of hours, said goodbye to Elizabeth and Charlie, and made one last stop on the way out of town for key lime pie ice cream and raspberry lime rickies at White Farms, another local institution. Totally satisfied but also completely stuffed, (and mildly horrified by this respite from a healthy diet) Peter and I opted to forgo a plan for dinner. After agreeing that we would do it all again before summer ended, we pointed the car north and got back on the highway.
life and breath: outliving lung cancer 
YIPPEE is right!! You go, girl!
Hope to see you, David and Peter later this month in Meredith!
Let’s have a drink (or two!) together!
Will and Pat, you can count on it (all of the above). Linnea
Yay for being able to stay on-study!
And glad that you got fried clams there! It sounds like a wonderful trip. 🙂
Suzanne, yay is the word! And yes, those clams were yummy (in the way of all fried things…) Linnea
Yeah! Time to start planning your trip with Aug!
Amy, I’m on it! Linnea
Wonderful news Linnae! I am 9 weeks on 1066 and my first scan showed the largest tumor had shrunk a cm and the multiple bilateral nodules are less prominent. It was not quite 30% reduction in disease but I rarely cough and feel so much better than I did. When your LFTs went up, which specific ones did and did they eventually level off or return to normal? All mine are slightly elevated.
BTW, I visited Crane Beach for the first time in June 08, shortly after I was diagnosed. We stayed in Annisquam and I still have the most beautiful surreal looking photo of the lighthouse on my frig. We had fresh strawberries from, I believe, White Farms and ate at the Clam Shack too. It is a special place! Is that the beach you painted in the picture with the child in it?
I’ve enjoyed reading about Marfa and your adventures there too.
As always, thanks for your help!
Sharon
Sharon, congratulations on a positive response. I love that you are feeling so much better (it makes it so much easier to stay positive).
You know, we don’t discuss my LTF’s–so I can’t answer that question (I’ll be sure to ask it next time though).
Annisquam is one of my favorite places on the north shore. A gorgeous little beach where it looks almost as if the sea level is higher than the sand. There is not much better than lying in the sand and listening to the waves. Take good, good care! Linnea
Dear Linnea,
I’m so glad that stability reigned for you! It did for me, also, on my last CT scan 3 weeks ago. Now I will hope that next time the result for each of us will be stability again, or perhaps even better – perhaps more shrinkage of our cancers due to the 1066. I just found your website this week. You write beautifully, and I very much relate to what you write, as our paths have similarities. I was first diagnosed with NSCLC, with BAC characteristics, in December 2003 at age 51; I had no symptoms, and the tumor was found on an x-ray as part of a routine exam. I never smoked and had never thought about the possibility of this diagnosis, hence was shocked. I have two wonderful children and a supportive husband, so I became determined to do whatever was necessary to continue life with them. Two lobes of my right lung were removed, and then I had adjuvant chemotherapy with 4 rounds of carboplatin and taxol. I then took Iressa for five years (as additional potential adjuvant therapy; the EGFR tests weren’t established at that time). After six years of NED, I thought I had beaten the cancer, but it reappeared in 2009, and once again I was devastated. I was put on Tarceva, but later learned (after test results were re-examined by a more careful doctor) that I didn’t have the correct EGFR status, so then did six rounds of cisplatin, Alimta, and Erbitux. By this point we knew that I have the ALK mutation, so my oncologist researched where I could get into a clinical trial with 1066 (now “crizotinib”) since there are none in my state. I was admitted into a Phase II trial and began taking the drug in April, 2010. I travel every three weeks for checkups, and have CT scans every 6 weeks. So far, my first 2 CT scans showed shrinkage of my cancer, and my most recent CT scan 3 weeks ago showed stability. I had gotten my hopes up that the shrinkage would continue, so at first I was worried when I got the stability report. Now I hope that my next CT scan will show stability, or better yet, more shrinkage of the cancer. I feel good and continue to work (I’m a biologist), travel, garden, exercise, and live fully with my family and friends. I have fairly minor side effects from the crizotinib (some visual disturbances in low light, a little digestive upset; I do have neuropathy in my feet and hands, but it may have developed because of the cisplatin that I had prior to the crizotinib, although I guess a few people are reporting numbness and tingling as side effects of crizotinib – have you had any?). I am thankful for this advancement in treatment and hope that more new targeted therapies will be successfully developed. Thank you for your inspiring writings and for facilitating communication among those of us on similar journeys. (Please feel free to contact me at my email address if you’d like more information)
Joy, Thanks for writing. One of the bittersweet joys of this blog has been the number of people who have in turn reached out to me. Our paths do indeed some similar (as well as our desire to fight). Although I do prefer shrinkage (better yet, resolution), I have learned that stability is an acceptable state of being. Even in my particular case, where we know the cancer is becoming resistant to the 1066, my oncologist feels that it is yet at least partially effective (finger in the dike, if you will). For those of us with an ALK mutation, there have been been feww effective treatments in the past, so it is all really remarkable. And yes, researchers are hard at work on alternatives to 1066.
I also developed some increased neuropathy while on crizotinib. It is nowhere near as intense as what I experienced after cisplatin/taxotere, but as it suddenly cropped up, I would assume it was because of the 1066. Dr. Shaw suggested that I take over the counter vitamin B6 and it did seem to help. Anyway, I wish you the best, stay in touch, and I will as well. Linnea