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Monthly Archives: March 2016

Opportunity to honor Dr D Ross Camidge

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Camidge and daughters

Dr. D Ross Camidge, MD, PhD, at the University of Colorado (CU) Cancer Center has provided me and many other lung cancer patients and caregivers with hope, support, effective clinical trials, remote second opinions and excellent cancer care. On April 5, Dr. Camidge’s work will be honored as he formally accepts the newly-created Joyce Zeff Endowed Chair in Lung Cancer Research.
   
A patient speaker (not me) will be talking at the event about Dr. Camidge’s impact on patients. We have a unique opportunity to show Dr Camidge–as well as the donor Ms. Zeff and CU–how many people he has helped in lung cancer patient communities .
   
If you are willing to have your Camidge experiences and kudos shared from the stage at the recognition ceremony, please post them below. I’ll make sure they get to the patient who will be speaking. If you want your name (real or online) associated with the quote, please say so in your post.
   
Thanks in advance for your contributions!
   
Janet Freeman-Daily (AKA Squanch)

Crizotinib (Xalkori) approved for ROS1-positive NSCLC!

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The anticancer pill I take in my clinical trial, Xalkori (generic name crizotinib), was approved today by the FDA for my type of lung cancer: ROS1-positive non-small cell lung cancer.  I’m one of the 50 patients whose results were included in the clinical trial data.

In addition to being happy that I found an effective treatment for my lung cancer–I’ve had No Evidence of Disease for 36 months and counting–I feel proud to be part of the research that is making new cancer treatments available for more patients.

Precision medicine, targeted therapies, and clinical trials are awesome.

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Edit 2016-03-11 2 PM to add:

Some people have asked what this approval means to my participation in the clinical trial.

The short answer:
Nothing has changed for me. I’m still in the clinical trial, and I still get my drug free (but have to pay for my travel).

The long answer:

Last April, Xalkori for ROS1+ NSCLC received “breakthrough” FDA designation, which is one type of accelerated FDA approval. The accelerated approval process allows the FDA to grant approval before a Phase 3 clinical trial is completed, but still requires a Phase 3 trial to be completed eventually. So my clinical trial must continue until the Phase 3 trial is complete, or the FDA will pull its approval of Xalkori for ROS1 NSCLC.

Xalkori originally received breakthrough designation for ALK+ NSCLC, and was granted FDA approval through the accelerated process in August 2011 (the fastest drug approval to date). The Xalkori for ALK+ NSCLC phase 3 clinical trial still continues over four years later. So I suspect my clinical trial will be continuing for some time.

However, even if I left the clinical trial, Xalkori is already covered by most insurance plans, and today’s FDA approval means pretty much all plans will cover it. However, the copays vary considerably.  Some plans cover it as a pharmacy benefit with a substantial out of pocket expense.  Others cover it as a medical expense, with a standard deductible.  I haven’t checked to see how (or if) my plan covers it.

I plan to stay in the clinical trial at the University of Colorado for the forseeable future.  I like having regular access to some of the top experts in the world on ROS1 cancer and molecular testing for precision medicine.  My writing income goes to fund their Lung Cancer Colorado Fund for lung cancer research.  I also participate in their research as a patient advocate on the NCI-sponsored CU lung cancer SPORE (Specialized Program for Research Excellence) and get to learn about cutting-edge cancer research, which satisfies the geek in me. Besides, I’ve grown fond of several people I’ve come to know at CU.  It’s become a second home of sorts.

So, yeah, this approval does not change my treatment. But hopefully it will make the treatment more available to more patients ASAP.

Communing with a Giant on Cancer, Life

This past week I attended the Rainforest Writers Village with twenty or so other science fiction writers.  The resort where we stayed is on the southeast tip of Lake Quinault, adjacent to the southern border of the Olympic National Park in Washington State.  It was quiet, beautiful, and slow-paced—the perfect place to take a break from everything and focus on my writing.

After lunch the first day, I decided to take a meditation walk along the lakeshore in hopes of absorbing some of the abundant tranquility. When I walked this same path 14 months ago (December 2014), Washington was experiencing a drought. This year, we’d had our wettest winter EVER, and the level of the lake reflected the additional rainfall.  Tree roots normally anchored on the mossy bank now stood in a couple of feet in water.

The first hours of the retreat were graced with several downpours, but for the moment, the rain had stopped. I took deliberate steps along the soggy pathway, carefully placing my feet to avoid adding another fall to my medical file.  I concentrated on taking slow, deep breaths.  Gradually my thoughts came to rest in the moment.  I smelled the surrounding evergreens, felt the moist rainforest air, heard the enthusiastic creek swollen with runoff, saw a raven stepping carefully on puddled lawn.

I meandered past deserted trailer slots and a closed bathhouse to the end of the campground, where stood the World’s Largest Sitka Spruce Tree.  There I encountered a couple of other writers who were also taking a break from their labors.  We imagined the tree was lonely and had called for company.  Eventually, the others wandered off, leaving me alone with the tree, and my thoughts.

Despite hundreds of droughts and downpours, the thousand-year-old giant before me stood firmly anchored in the earth, continually adding rings to its impressive girth.  The diameter of its trunk exceeded twice my armspan, and the massive roots spread at least twice again as far.

Standing under its broad arms, dwarfed by its great size and age, I was struck by … Read more

A Crowning Achievement

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Here’s an example of technology making a huge positive difference in healthcare, with very little fanfare.

While waiting for the dentist to see me during my recent checkup, I asked the hygienist if they had an old printer running a large print job–I could hear a continuing buzz from somewhere in the office.  I was imagining a 1970’s style printers with those spiky little wheels feeding long continuous sheets of paper and a dot-matrix ink cartridge zipping back and forth, like those that ran our card batch jobs during my college days (yeah, I’m that old).

Turns out, it wasn’t an OLD printer.  She took me into the next room and showed me a device the size of a microwave.

My dentist can now create a custom crown using a 3D printer during one office visit. The system designs the crown using 3D imaging to ensure a good fit in your mouth–no more temporary, ill-fitting crowns.  More on the process is here.

3D crown printing

So we have a new variation on Precision Medicine–custom crowns designed while you wait.  Technology is so cool.

image from “New At The Dentist: 3D Printing Dental Crowns While You Wait”

 

Patient Advocate Scholarships Available to Attend #ASCO16

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Photo shows two mean chatting in the bustle of Annual Meeting.

If you are a cancer patient advocate interested in attending ASCO 2016, consider applying for the Conquer Cancer Foundation Patient Advocate Scholarship Program.

I have attended ASCO’s annual meeting in Chicago for the past two years.  While the five-day conference can be exhausting, it’s perhaps the best way to learn what treatments are up and coming for your type of cancer, become educated about the science behind research and clinical trials, and discover (and even chat with) the experts in your type of cancer.  It’s also a place to meet the people in your cancer community who you might only know online.

The ASCO (American Society of Clinical Oncology) 2016 Annual Meeting–held in Chicago June 3-7–will bring together over 30,000 cancer professionals from around the world for sessions about state-of-the-art treatment, results of clinical trials, as well as policy, advocacy, and survivorship issues.  You might strike up a conversation with a world-class expert in your type of cancer at a poster presentation or even walking between sessions.  The exhibit hall is a great place to learn about new biotech technologies (such as genomic testing panels and liquid biopsies) as well as what’s in each pharmaceutical company’s drug pipeline.

The Patient Advocate Scholarships are intended for expenses related to air or train travel, lodging, and meeting registration for advocates traveling from outside the Chicago area to attend the meeting (which can add up to $2K US or more).  Eligibility is based primarily on financial need as well as advocacy experience and current activities. Applicants will need to demonstrate why they would not be able to afford to attend the ASCO Annual Meeting without a scholarship award, and are encouraged to provide a compelling reason why their attendance at the meeting is vital to their advocacy role(s).

Although the application period for the doesn’t open until April 4, get an early start now on preparing your application –the application period will only open for three days!