"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, February 17, 2017

Knitting Blog: Still Knitting Sweaters

A new sweater came off of my needles and onto my back, and I’m happy to report that I was able to finish this one in early December, in time to actually be used this winter.

I started this sweater last summer when my vision was deteriorating day by day due to rapid onset cataracts. One day I could no longer knit socks because the stitches were too small for me to see well, and I needed a project using larger yarn on larger needles. I kept trying the sweater on as I knit it and it seemed awfully snug, but denial was on full display as I kept telling myself everything would be OK - “It will block out to size.” Ha! Those famous words have doomed many a knitting project to failure. After I had knit approximately half of the sleeves, denial no longer worked. They were so snug, I could see my skin through the stitches. So I ripped back half of a sweater to the beginning, and cast on again, this time two sizes larger to accommodate both a gauge discrepancy and my need for (literally) more breathing room because I had gained back a few pounds after I had started the project. It was worth starting all over again.

The pattern is Ysolda Teague’s Vivian, a pattern published in the Twist Collective’s Winter 2008 collection. I made a few changes, with the assistance of my brilliant daughter. I detest knitting zip-up cardigans, because I have never been able to install a zipper in a knitted garment and be happy with the result. Ana designed a 12-stitch plait that could divide in half and become a neckline edging, and I substituted the plait for the cardigan opening, converting the sweater design into a v-neck pullover. I also deep-sixed the hood in the original design, and modified the waist shaping in the back to account for the fact that I am shaped more like a tube than a wasp.

The yarn is Berroco’s Lustra, a soft single-ply yarn that is 50% wool, 50% tencel. Singles are known to pill easily and to skew, and this yarn needs to be knit into a densely textured sweater like this one to minimize both potential issues. The tencel makes the yarn very shiny. The color is labeled “Rust”, but I felt like I was knitting with molten copper.

Legacy: I have no one designated for this sweater, which is one of the most spectacular ones I have knit, if I do say so myself. I have visions of my relatives fighting over who gets it after I’m gone. My sneaky hope is that fit my daughter can wear it. It’s stretchy and her kind of color, and just maybe it will fit her.

Two Blog Posts at Free to Breathe/HealthUnlocked: What It's Like to Be in a Clinical Trial

Another two-part series, this time looking at what it's like to be in a clinical trial. The first part covers some basic information about clinical trials in general: what are the different types of clinical trials? What do they require? Who pays for them?

The second part describes my experience in a phase II trial for an experimental drug. I have talked about this trial in a previous post on this blog, but this piece has been freshly written.

Blog Post at Free to Breathe/Health Unlocked: Sorting Out the Stuff after a Lung Cancer Diagnosis

The weight of a lifetime's accumulation of stuff may seem especially heavy when you realize in your gut that your life is finite - and that someone else is going to have to deal with all that stuff some day if you don't.

This post has been one of my most popular at the Free to Breathe patient support site.


Blog Post at Free to Breathe/HealthUnlocked: Why I Have Two Oncologists

I see both a very smart general oncologist who practices at a local cancer center and a very smart research oncologist who practices at a major cancer research hospital. I talk about why in this post.

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:

“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