"Be conservative in what you do; be liberal in what you accept from others.” Jon Postel

"Knit on, with confidence and hope, through all crises." Elizabeth Zimmerman

"My job, for the rest of my life, is to AMPLIFY." Me 10/29/2016

Friday, January 6, 2017

Finding Support as a Lung Cancer Patient: New Posts at Free to Breathe

The question of where we can find emotional support as lung cancer patients is a huge one, and I break it down into two sections in two blog posts this week for the Free to Breath lung cancer patient support site.

We reach out for support first from family and friends. There are caveats, however - they are also having a difficult time with your illness, and maybe you can't talk with them about everything you are thinking about, or discovering.

Finding Support as a Lung Cancer Patient: Family and Friends














Photo credit: Creative Commons CC0 Public Domain image from Pixabay

In part two, I discuss places to find support if you decide to reach out beyond family and friends: phone calls with other patients, church, support groups, conferences, and counseling.

Finding Support as a Lung Cancer Patient: Reaching Out














Photo credit: Unmodified image by Colin Gray, taken for the Govanhill photoshoot at the Arches, Glasgow, licensed under terms of Creative Commons Attribution 2.0

May we all find support for ourselves. One point I did not mention: I have found support by deciding to support others. A virtuous circle may be the strongest support network there is.


Wednesday, December 28, 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. Even trials with small cell lung cancer patients have shown enough response so that immunotherapy is now included in NCCN guidelines as a possible second line treatment. These statistics might seem disappointing, but they are a lot better than the other second-line chemotherapy drugs available to us.

The side effects can be very serious, including pneumonitis and auto-immune reactions. If you decide to try immunotherapy, you’ll need to be vigilant and to know when to call your doctor, and your doctor needs to prepare to handle a wide range of possible complications. An in-depth discussion is obviously in order between you and your doctor so that you make sure that you are both ready for this new and different lung cancer treatment. 

Researchers are still working to improve these drugs. The current thinking is that they will work even better in combination with other lung cancer treatments, including other drugs, chemotherapy, and radiation therapy. There are many, many clinical trials happening right now that are testing various combinations. By the end of the decade, we are going to know a lot more about the best way to use immunotherapy drugs.

Who can use immunotherapy? 
- All newly diagnosed non-small cell lung cancer patients not eligible for targeted treatment if they have enough PD-L1 biomarker. (FDA approved!)
- All non-small cell lung cancer patients after initial treatment with either platinum-based chemotherapy or targeted therapies. (FDA approved!)
- Small cell lung cancer patients after initial treatment, per NCCN guidelines. This is not FDA approved yet, so expect some discussions with your doctor and your insurance company if you want to try this new class of drugs.

One group of patients who will want to approach immunotherapy with caution are those with targetable mutations - EGFR, ALK and ROS1. I attended the Targeted Therapies in Lung Cancer Patient Forum in Denver, CO, in August 2016, and the doctors there said that analysis of data from drug trials shows a lower rate of response to these new drugs in EGFR patients. They strongly suggested that this group of lung cancer patients should use chemotherapy first before using immunotherapy drugs.

It’s not a miracle or a cure, but immunotherapy puts a healthy serving of HOPE on the table for nearly all of us. I know several lung cancer patients who have already benefited from these drugs, in some cases showing a remarkably good response. As I think about everything that has happened this year, I put this new standard of care firmly in the category of “good news”.


Link to my chart of FDA approvals of immunotherapy drugs at end of 2016:
https://docs.google.com/spreadsheets/d/1HIUkKJiiHXVxxANgh8s-ikNCRFvVqsX4Zj8YEVrBCO4/pubhtml?gid=0&single=true

Sources:
“Hematology/Oncology (Cancer) Approvals & Safety Notifications”, FDA, http://www.fda.gov/Drugs/InformationOnDrugs/ApprovedDrugs/ucm279174.htm
“Nivolumab alone and nivolumab plus ipilimumab in recurrent small-cell lung cancer (CheckMate 032): a multicentre, open-label, phase 1/2 trial”, PubMed.gov. https://www.ncbi.nlm.nih.gov/pubmed/27269741

Photo is in the public domain.
Source: National Cancer Institute/Duncan Comprehensive Center at Baylor College of Medicine
Creator: Rita Elena Serda





Tuesday, December 27, 2016

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.
On Being on the Same Page as Elderly Parents

A look at how lung cancer changes our relationships with food and body weight.
Food, Glorious Food: Lung Cancer, Food, and Weight Loss

Sunday, November 13, 2016

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 a delight to knit my own yarn. Spun from combed merino top, the yarn was warm and elastic between my fingers. It was also fun to finish a project quickly - that is if you don't include the time spent spinning the yarn.

The finished product:






























Kinda gappy around the armholes in the back, but I love it. I’ve been wearing it using a shawl pin to hold it closed in the front. I will wear it a lot this winter. 

I was wondering about this vest’s legacy as I was making it. Who the heck would want this some day? I’m pretty sure that it’s not to my daughter’s taste for herself. Well, my best friend Bonnie loves it, and it fits her. I hope that she gets it someday when I am finished with it. The vest will be a big hug from me to her, from the twist in the yarn to the loops of the stitches.

My final project for this post is a lace shawl that was two days short of being two years in the making. What that means, of course, is that most of the time I was NOT making it, and it was in a bag waiting patiently for me to get back to it. I cast it on a few months after being diagnosed because I thought It would be good to do something with the yarn, but realized not long after that I didn’t need a lacy shawl. I wasn’t sure if I even wanted it. Earlier this year, though, I took it out, pondered working on the project again, and realized that the shawl wasn’t for me. It’s for my sister Julia. All at once knitting this shawl was easy, and it was my travel knitting this summer.

Lace shawls make wonderful travel knitting. They take up little room in luggage or a purse and are not intimidating on an airplane, because the needles are small. I find them easier to knit on the go than socks, because the stitches are more open.

The pattern is by Myrna Stahman from her book Stahman’s Shawls and Scarves. It’s a Faroese style shawl and features extra shaping in the shoulder area so that it drapes beautifully and stays put when you move. 

Here’s a montage of the finished shawl being blocked. Ah, blocking - it’s magic, taking a crumpled thing and turning it into a smooth, fluid garment. 
































And here is a picture of the shawl on my dear sister Julia. I gave it to her last weekend. Do you think she likes it? Now the shawl is part of her story.






Monday, November 7, 2016

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 have sweaters that are over 20 years old, and they look nearly as good as new. If you use good yarn and the moths stay away, knitting can last for decades. Of course, good yarn is key. I made many sweaters from crappy yarn in my early days of knitting, and they are long gone from my closet.

As I knit any project these days, one of the things I think about is who will use the object I’m creating after I’m gone. That has become part of my personal mission statement for the project. I don’t worry about socks, someone will want them. I’m being mindful of the final disposition of other items; it’s hard to think of spending my precious time knitting something that I will use for a relatively brief time, and that then will languish, unwanted and unloved.

I’ve completed five major projects in the past 14 months. I’m confident each of them will find a home someday - or already has one, because two of the projects were gifts. I’ve divided those projects between two blog posts.

The Lush Alpaca Cowl

Special yarn needs just the right pattern, and this was special yarn - Owl Ridge 100% alpaca in “Ortiz”, a lovely natural deep silver. The name of the yarn most likely comes from the alpaca who provided the fleece that became the yarn.  A search on Ravelry turned up the perfect pattern: Cowl Fushia by Izzie Ophelie, a French designer. This pattern is an undiscovered gem.



I don’t know who will claim this some day. Karma suggests that it should be my sister, because she gave me the yarn. It’s not going to molder in a drawer, because it is buttery soft and looks great.

Robert’s Vest

My husband has loved getting knitted vests from me over the years, and I decided it was time to make him another, from a high quality pattern and materials. The pattern comes from Veronick Avery, one of my favorite designers. Robert is picky about yarn, feeling the prickle easily, so I chose Berocco Ultra Alpaca in colors that reminded me of the very first vest I knit for him. This one is a lot nicer.



One nice detail - a turned up hem rather than ribbing at the bottom of the vest. The vest glides right over the belly, and is much more flattering on a guy than one that pulls in below the waist.

Travel Shawl

This project is emotionally satisfying on many levels for me. It is a big square shawl that can also be a blanket, knit from a US sourced yarn in a fascinating colorway (Peace Fleece’s “Distant Maples), and it is another Veronik Avery pattern. This is a comforting piece that I can envision using in many ways through sickness and health.

It is also one where the legacy was clearly in mind with every stitch I knit. I want my daughter to have this shawl some day. I love the color, but I also chose the yarn because I knew that she would love it as well.

She took some evocative pictures of me wearing it at a favorite place.






















Here is a photo of the yarn. It is a blend of purple and a bright lemony green with bits of blue. Who would guess what a fascinating color would result? The intent is to echo the bark of maple trees after the leaves have fallen.


And with that, I will end this post because it is long enough. Part II with two more projects will be posted in a few days.




Thursday, October 13, 2016

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 that the patients who responded to gefitinib had an epidermal growth factor receptor mutation in their cancer, or EGFR. The discovery set off a flurry of research into mutations in lung cancer tumors, and the current state of this research looks like this:



Source: “ALK Positive Lung Cancer” presented by Shirish M. Gadgeel, MD, at the Targeted Therapies in Lung Cancer Patient Forum, University of Colorado Cancer Center, August 20, 2016.

These mutations are nearly always somatic, not inherited, existing only in the cancer, and not in the rest of the body. Three of these mutations, EGFR, ALK and ROS1, have at least one FDA approved targeted treatment, and clinical trials are searching for effective treatments for others. In the case of EGFR mutations, the one I know best, there are now three generations of targeted therapies available, one of which treats a new mutation that arises during initial treatment. Mutations upon mutations!

Upsides and downsides, advantages and disadvantages, it’s always a mixed bag in Cancerland if you are stage IV and trying to live with your cancer as a chronic disease. Having a mutation can give you an edge and extend your life by giving you access to targeted medications that are easier on the body than standard chemo, but different people with the same mutation respond differently to treatment. Some may be stable for years on a targeted therapy, while others may develop resistance rapidly. There are no guarantees. I had a shock of realization when I saw these targeted treatments described as “palliative” in an article. They can hold the disease back and improve quality of life, but they do not cure.

Resistance is inevitable when you rely on targeted treatments. It has happened to me. After three months of treatment with erlotinib, my cancer had almost entirely melted away. At six months, however, it proclaimed, “I’m back”, and by ten months, when I changed treatments, it had grown to be larger than it was on diagnosis. I’ve heard of one case of a man who seems to have had a total response to erlotinib that has lasted for 10 years and who chose recently to go off treatment. He is a remarkable exception, and is truly stepping out into unknown and unique territory. It is more usual for patients to get an initial reduction in their cancer followed by stability  that lasts until resistance develops and the cancer starts growing again. If you are lucky, there will be a next generation drug you can switch to for another good year or so. If not, you join the rest of the lung cancer patients sitting in the chemo infusion chair.

Just because you have a mutation does not mean that you can find a treatment specific to that mutation. The science of identifying mutations and finding effective treatments is in its relative infancy. A good example is KRAS. As of this writing, no targeted therapy has proven effective in trials, and standard treatment (and prognosis) is the same as for a patient with no targetable mutation. Thus, “Take my mutation. Please.”

Ironically, having a targetable mutation may mean other good treatments are less likely to help you. Immunotherapy is a case in point. This is the hottest development on the lung cancer scene, and two FDA approved drugs are now available for patients who have had chemo. A very recent study demonstrates that one of these drugs, pembrolizumab, is more effective than chemo in newly diagnosed patients, a finding which is going to rapidly change how lung cancer is treated. Meanwhile a third drug has successfully completed trials and is expecting imminent FDA approval. However, subgroup analysis indicates that response rates to immunotherapy in people with the EFGR mutation are lower than they are to crappy second line chemo, and indications are that the ALK and ROS1 folks are in the same situation. For those of us with these mutations, immunotherapy is probably a Hail Mary treatment to try after everything else has stopped working.

I’m now on my third targeted therapy for EGFR mutations. I took erlotinib from August 2014 through June 2015, and developed the resistance mutation T790M during this first line of treatment. I then enrolled in a clinical trial for rociletinib. This drug did an impressive job of shrinking my cancer by 43%, but it was also very toxic. Fortunately I was able to slide on over to osimertinib when I was booted from the trial in February 2016. This EGFR and T790M inhibitor had been FDA approved only three months earlier! I’ve been on it for eight months now, which frankly is longer than I expected to benefit from the drug, because I had already taken a T790M inhibitor for eight months. I’m stable and feeling great. We shall see what we shall see when I have scans in December.

The future I am hoping for is one with many effective treatment options so that it doesn’t matter anymore whether you have a mutation in your cancer, or which one it is. I’m looking forward to the day when all patients with stage IV lung cancer can live a goodly portion of their expected lifespans with good quality of life. Then we won’t be envious of anyone, or at least of each other.

References:

For a comprehensive and detailed discussion of lung cancer mutations and treatments, I recommend the following article, written by Lecia V. Sequist, MD, MPH and Joel W. Neal, MD, PhD.

The history of gefitinib:

On pembrolizumab’s successful trial as a first-line treatment:

On nivolumab vs. docetaxol, with data showing poor response to nivolumab in EGFR patients included in discussion portion:

General presentation by J. Soria, includes slide from Hellman presentation at WCLC 2015 showing poor response to pembrolizumab in EGFR patients (original presentation slides behind paywall) - 48th slide:





Tuesday, September 20, 2016

Remembered

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 speeches talked about how the kitchen will be used in the future and about the partnerships that made it possible. I talked about the history of the facility and how the kitchen gives this Cooperative Extension agency its heart. There is more about the background of the project in the attached newspaper links.

Best of all for me were the people who came to remember me - friends, former coworkers, and family. My sister Julia took a day off from work during a busy time to bring our 90 year old mother to the dedication. Mom is a retired Cooperative Extension Foods and Nutrition Agent, and it seemed especially fitting to see her standing in the kitchen.


IMG_4528-2016-09-13-00-55.JPG
From left: Julia Figueras, Jan Hickman, Anita Figueras, Robert Best
Photo credit: Judy Andrus Toporcer, www.WizenedEye.com

Newspaper articles:

http://www.watertowndailytimes.com/news05/new-commercial-kitchen-celebrated-at-st-lawrence-countys-cornell-cooperative-extension-farm-20160912&template=mwdt

http://www.northcountrynow.com/business/new-kitchen-cornell-cooperative-extension-canton-could-be-big-help-farmers-looking-market