Showing posts from 2016

There's a New Standard of Care for Lung Cancer

How many people have fully wrapped their heads around the recent change in the standard of care for advanced lung cancer? This change has rolled out bit by bit since May of 2015 (less than two years ago!) with FDA approvals of three new drugs, and now includes nearly all types of lung cancer. It’s part of the National Comprehensive Cancer Network (NCCN) guidelines for care, which means oncologists should know about it, and insurance companies should pay for it without a fight. When I look at the short amount of time in which this change has happened and the number of lung cancer patients who are potentially affected, it seems to me that this really is big, big news.
I’m talking about the newest innovative treatment for lung cancer - immunotherapy.

It doesn’t work for everyone - in fact, it won’t work for most of us. No one treatment yet does, probably no one treatment ever will. But 40% of patients with non-small cell lung cancer respond for a while, and 20% respond for a long time. Eve…

New Posts in a New Place

As a new year approaches, I have a new platform for some of my posts. I am now a Community Blogger for the Free to Breathe site on the HealthUnlocked platform. HealthUnlocked is an international site bringing together non-profit groups dedicated to helping people with serious and chronic illnesses, and offering a place for people to connect with others, be they survivors, patients, or caregivers.

While I'll be posting regularly on the Free to Breathe site, I'll also continue to post here from time to time. I still need a place to post about my knitting, and I also have some long form pieces I want to do that more properly belong here. A post about the new standard of care for lung cancer is done now, and I will put it up in the next few days.

My first two posts for Free to Breathe are:

A meditative piece on how I have in effect skipped ahead a generation due to my diagnosis of lung cancer, and I now stand with my elderly parents, with much the same concerns and outlook on life…

Knitting Blog: A Legacy in Knits Part II

A new knitting goal for me is to envision the next person who will use any knit that I make for myself. I am still busily knitting for myself, because I love wearing clothing that I made for myself, and knitting is my preferred craft - and because it is harder than you would think to knit something for anyone else. I’ve gone wrong more often than I care to admit, giving a hand knit that I was proud of, only to see a lukewarm smile on the recipient’s face.
This particular project, the Endless Circle Vest designed by Julie Farmer, is especially personal, because I spun all the yarn for it. That process took a lot longer than I expected, and I ended up with a bulkier yarn than was my goal when I started the project. The yarn was consistent, though, and very knitable, so I searched for a project that would work with the amount of yarn I had and that would be forgiving of a yarn that wasn’t mill perfect. The vest is kind of funky, but so is the yarn, and so, for that matter, am I.
It was …

Knitting Blog: A Legacy in Stitches Part I

I continue to knit nearly every day. These days I think of my knitting as my legacy in stitches.
Legacies. What will persist beyond our lives? This is something that surely other people think about when they realize that the end of their lives may be nearing. When I think of my life and my work, I realize that my knitting is the work that might endure the longest.
My accounting work? The general ledgers of each year I closed will live on as PDF files on a server in Ithaca, but with a document retention schedule of 6 years for nearly everything else, almost every piece of paper I carefully filed away during 13 years of work will be shredded within five years time. I did leave the organization in a healthy financial position so it is more likely endure for many years, and there is a plaque on the wall of a kitchen memorializing my name and my work. I cannot take credit either for the work that the agency continues to do or for its continued operation.
My knitting will survive me. I hav…

Mutation Envy

Seen in a lung cancer foundation’s chatroom recently:
A: I wish I had a mutation. B: I’ve got one. If you want it, you can have it.
This is something we don’t talk about in the lung cancer community, at least not out loud: that we might be envious of someone else’s cancer mutation. While personalized medicine is still an ideal rather than a reality, some lung cancer patients find themselves on the frontier of a different approach to medicine, one where each person’s treatment is based on her or his disease’s genetic profile.
in 2003, a medicine called gefitinib was approved by the FDA for treating lung cancer in all patients who had had chemotherapy. After additional research, this approval was rescinded in 2005, because the drug did not extend life over the population of patients as a whole. Doctors noticed, however, that the medication helped a minority of patients a lot, even as it didn’t help other patients at all. When researchers investigated why this was so, they discovered th…


Several years ago I set about writing a condensed biography to use on my blog and on other social media sites. As I’ve changed the bio over the years, I have kept one phrase: “I’m very content to be one of the little people, whose names aren’t recorded in history books and who are remembered only by family and friends after they die.” Perhaps memories of my voice and my face may fade, but it seems that my name will be around for a while. I had a kitchen dedicated to me on September 9, 2016.

Planning for the kitchen was well underway at the time I retired. Since then, my former boss and Executive Director of the agency, Patrick Ames, put together the funding for the project. What made the project possible was a change in funding rules that allowed USDA Rural Development to partner with the agency.

The dedication ceremony was as good an experience as I could have imagined. There were speeches by State elected officials, a County executive, Patrick, the Board President, and me. The other…

Going Blind

Feet on the sidewalk I feel kinda sick Hands out front I need a white stick Blurred in the morning Bruised at night Falling in the darkness Could've been a fight
My blind life I can’t see the road I can’t see the light  - My Blind Life by Chris Dreja, sung by The Yardbirds
Those lyrics are exaggerated, but I am going blind. Thanks to rociletinib, the experimental drug I took for eight months, I have rapid onset cataracts.
From Wikipedia
Fortunately, this problem can be pretty easily fixed. Massachusetts General Hospital sent all of its patients who took rociletinib and developed cataracts to a specialist from Tufts University, but we are lucky to have a very skilled eye surgeon locally. He has scheduled me for surgery as early as possible; I get my right eye fixed on July 26, and my left eye fixed on August 9.
It’s a fascinating experience. The first sign was in late April, when my eyeglasses no longer corrected for distance vision. After years of not seeing anything in focus without glasses, i…

Conference Fever

Does it sound strange to spend a weekend with 300 lung cancer patients and caregivers? Does it sound gloomy or frightening? It turns out that if you are a patient or caregiver, such a weekend could be a highlight of your year, one filled with hope and fellowship.
In late April, Robert and I set out on a two week trip that combined conference going with vacation. Our first stop was Burlington, VT, where we attended a day-long Lung Force Expo. This was an interesting day, filled with good information about managing one’s health with a serious lung disease and with information about the great promise of lung cancer screening. I was able to meet some fellow patients and some doctors who are relatively close to me in what is a terrific little city to visit. It also served as a warm up event for what was coming up next: the annual HOPE Summit put on by LUNGevity in Washington, DC.
We flew from Burlington to DC, thanks to a travel grant from LUNGevity that paid for my airfare and for two ni…

Anita's Excellent Adventure: I Speak Before the FDA ODAC

During a clinical trial clinic visit in January, my trial coordinator at Roswell Park Cancer Institute asked me if I would be interested in speaking before the FDA’s Oncologic Drug Advisory Committee about my experience as a patient taking the experimental drug rociletinib. Clovis Oncology, the company that makes and is testing the drug, was hoping to receive accelerated approval to start being able to sell this drug on the market, and a hearing scheduled for Tuesday, April 12 before this important advisory committee was key. The company was looking for patients to speak about their experience with the drug. 
I immediately said yes. Such opportunities are rare, and it’s exciting to have an opportunity to be part of the important process of drug approval beyond taking a drug as an experimental subject. As a bonus, the hearing would be held in Silver Spring, MD, near where our daughter lives, and I would get to see her and her husband.
In February, I talked with an executive from Clovi…

One Stop Shopping: The Benefits of Care at a Comprehensive Cancer Center

There are two types of centers that treat cancer: community cancer centers, and comprehensive cancer centers. I recently had an experience that made it clear to me that if you can get yourself to a comprehensive cancer center, you will likely find that the additional travel and related expenses are worth it.
I began care at a community cancer center, the Richard E. Winter Cancer Center in Ogdensburg, NY. I love this center and my doctor there, and continue to have a relationship with it - that’s where I get my bi-monthly Xgeva shot. Community cancer centers are necessary and valuable, especially for standardized treatments, but they offer little access to clinical trials and highly specialized services. I need my local center, because if I need a standard chemo treatment, it’s crazy for me to travel 5 hours one-way for the same treatment I can have only an hour from home. My doctor there is very sharp and good at seeing me and my situation holistically, but she is a general oncologis…

A Tale of a Trial

If there are demerit points for bloggers, I’ve surely earned quite a few by going through a clinical trial from entrance to exit without blogging about the experience at all. I will do my best to make up for this omission of potentially useful information with a synopsis of my experience.
If you have decided that a clinical trial might be your best next option, the first step is finding a clinical trial for which you match the profile of a qualified participant and that is at a logistically possible location. When my search for a clinical trial began in earnest in March 2015, I knew that there were two possible drugs that might be my best second line of treatment. One drug, AZD9291, had closed its trials and was moving towards FDA approval. The second drug, CO-1686, also called rociletinib, had an open trial at Roswell Park Cancer Institute in Buffalo, NY. I met the initial qualifications and I have family in Rochester, just an hour and a half from Roswell. So, game on!
How does a cl…