Tag: #Breakthroughs

Intentional Magic (Fog Cancer)

These are My ScarsLeave a comment

Intentional magic describes the alchemy that happens when you bring together a group of random people (who happen to be between 18-40) that share a common experience. That the common experience is living through or with cancer. You’d never know that was it, at least by looking at us. Young adults with cancer making lemonade from our lemons. Cancer is different for young adults.

When you are a young adult that has been diagnosed with cancer, it changes your life profoundly, in ways you don’t even know yet, and won’t know how far the ripples reach until you are looking over the wreckage of your life. It changes everything. It changes who you are. It changes who you will become. Nothing is the same as it was and nothing will be what you thought or planned for. Now add in that most of the patients in the waiting room are your parents age or older (yes I had medical staff talk to my mother instead of me and have had to correct them). That the majority of funding for support, care and treatment is focused on 45+ or 18 and under. That you will likely never get insurance, may never have children or will suffer from reproductive difficulties, are at risk for secondary cancers, and feel isolated and alone in an experience that few will share at lease at this age.

Now put these people all together and its magic.

As a young adult with cancer and a rare one at that, I can attest to the feelings of isolation and loneliness, confusion, frustration, grief, anger and sadness at losing the trajectory I had planned for my life. I have mourned my fertility and financial security. I have feared for my life, and sometimes still do. I know scanxiety, and loss. So much loss, my own and of others. Too many to count. It physically hurts to count, the beautiful vibrant lives this community has lost. I know, and so do those at Young Adult Cancer Canada. That’s why they are wizards. They create this intentional magic every year and every year its a homecoming for me. Every year we gather as a group to learn, laugh, cry, dance, and remember.

Its magic!

It has been about a week since I came home from my trip to Newfoundland for YACC’s Fog Cancer conference and I have say it has been a challenge getting back into the swing of things. I normally expect to experience withdrawal, but this year it seems even harder. I don’t know why, maybe its because I just turned 39 and I fear my time in this incredible community is winding down, or maybe I over extended myself, or maybe I fear that one day it will be me being remembered up on Signal Hill. Whatever way, life hasn’t been as vibrant and comfortable as it was a week ago. I feel a little more alone, a little more isolated, a little more mired in my own crap. I miss the cocoon of just getting it.

AM

 

Magic Happens

These are My ScarsLeave a comment

Something magic happens when you gather lung cancer patients together!

On the evening of Thursday November 17th Lung Cancer Canada hosted their annual Evening of Hope Gala. What was different this year was that our Gala would kick off our first Hope is Here Patient Summit.

Views from the 6 or 24th floor.
City Hall
Dr. Wheatly-Price
Me and the lovely Deb Maskins
Dr. R Juergens, Casey Cosgrove, and Dr. N Leighl
Our hosts with the most!

We welcomed Canadians from all over the country to the first ever lung cancer patient summit for a one-day conference held at the Sheraton Centre in downtown Toronto. The Summit featured educational break-out sessions, inspirational speakers (including myself and other patients), and the opportunity to connect with people from all over Canada who have had a lung cancer diagnosis.

The day was opened by our President Dr. Wheatley-Price. I followed him in welcoming our guests by sharing a bit about my story and all the breakthroughs in treatments and diagnostics that have been approved and are in practice since I was diagnosed in 2009. Our  morning program began with New Advances in Lung Cancer and covered a number of topics: Screening and Surgery; Radiation Therapy; Immunotherapy and Targeted Therapies; Future Direction of Lung Cancer; and a question session moderated by Dr. Wheatley-Price.

Adenocarcinoma drivers
Clinical trials save lives!
Images like this always blow me away!
Faces of lung cancer

Dr. Gail Darling gave us a comprehensive overview of the roll-out for Ontario’s Early Screening Lung Cancer Program for high risk populations. This is fantastic news because all the research surrounding early detection programs is very positive. The NIH’s National Lung Screening Trial (NLST) 2011, showed a 20% decrease in mortality in the screened group. That may not seem like much, but consider that for the same number of breast cancer patients screened there is only a 3 to 4% decrease in mortality. They showed that the number of lung cancer patients needed to screen to save one life is 320. For colon cancer the number is 600 and for breast it is 1000, proving early screening for this targeted population is truly effective and does indeed save lives.

Radiologist Dr. David Palma provided a very passionate presentation about radiation in populations that may have previously been denyed an opportunity to have radiation as a viable option after metastasis. He also championed the idea that in order for patients to be partners in their care and recieve the best care, they need to know how to advocate for themselves, decipher reports and how to compare their care against published guidelines.

Dr. Rosalyn Juergens gave us the low-down on Immunotherapy and Targeted Therapies. A very informative session illustrating complexity of lung cancer and the variety of new therapies designed to treat them. She discussed the numerous targeted therapies available for both EGFR and ALK, but now also for ROS1 and other driver mutations. Immunotherapy is another area where a number of agents are being tested and approved for use in patients with great success and lasting effects. Finally, there is hope for lung cancer patients.

With our brains and notepads full, it was time for a break and a bit of socializing. Following the break, we continued with the McAlpine’s who shared their story with us. The crowd was brought to tears as Ian and his wife Cathy shared the ups and downs of accessing treatment. To my amazement, I realised that I had seen them many times and that we had shared a doctor. Their tenacity brought them from British Columbia to Ontario to get care, and I am so happy that the journey has been successful.

My former oncologist Dr. Jeffrey Rothenstein gave his presentation about participating in and accessing clinical trials. According to his presentation, only 3 out o f 100 patients take part in clinical trials and even fewer lung cancer patients participate. What is mindboggling is that 85% of patients aren’t aware that clinical trials are viable treatment options. I can attest that clinical trials save lives! I literally wouldn’t be alive today if it weren’t for that option.

My current oncologist Dr. Natasha Leighl presented her perspective on treatment access and cost. What was great about this presentation was that it wasn’t just literal cost of medications that was discussed, but the toll on the family, inequality of access, and a number of other factors that affect patients after a diagnosis of lung cancer. I had no idea that Canada was second behind the U.S. in out of pocket drug costs, and that 91% of cancer patients will suffer from financial toxicity. She also highlighted the fact that Canada is much slower than other countries when it comes to drug approval and funding. This was a focus of Lung Cancer Canada this year in their 2016 edition of Faces of Lung Cancer.

Before we dispersed for lunch, my friend and our Vice President Casey Cosgrove discussed advocacy and community involvement. Illustrating both the need for volunteers and advocates and ways to help. I loved his point that not everyone is good at or wants to do everything, but if we do what we’re are comfortable with, we can help in our own way.

During our lunch break, our keynote speaker Darrell Fox spoke to us about his older brother Terry, and the legacies Terry Fox left behind. The Terry Fox Foundation which has raised over 700 million dollars since Terry’s death in 1981 and the Terry Fox Research Institute. The TFRI is funding the Pan-Canadian Early Lung Cancer Detection Study. Darrell also shared his father Roland’s story. Rollie as he was known passed away this year from lung cancer making the Fox family a part of our community. It was a truly emotional speech and not many of us had a dry eye.

Terry Fox’s Legacy
Mr. Darrell Fox

The remainder of the day consisted of breakout sessions that included sessions in nutrition, breathing and exercise, financial planning and palliative care. Each session was very informative. The nutrition session provided ideas and tips to quick healthy meals that cater to health and healing. The exercise and breathing session demonstrated activities that one could do at home and that could be adapted to differing abilities. The session was sponsored by Wellspring who hosts a 20 week exercise program for patients. The financial planning session provided tips to help plan while ill, or to prepare incase of death. Finally, the session on palliative care discussed the variety of options and that palliative care isn’t just about dying.

After regrouping it was time to close the day with a photo and good-byes.

img_4746It is impossible to describe the feeling when you meet someone else like you.Therefore unimaginable when you meet 60. All I can say is my heart was full and I am so privileged to be a part of such a wonderful event. This was Lung Cancer Canada’s first Hope Is Here Patient Summits, I know it won’t be the last. I thank everyone in the office and all the volunteers and sponsors for everything you did!

AM

 

 

A Breath of Fresh Air

These are My Scars1 Comment

We must accept finite disappointment but never lose infinite hope.

-Martin Luther King Jr.screen-shot-2016-11-12-at-4-46-08-pm

For a very long time, lung cancer research had languished and little improvement occurred in treatments and patient care. Most required chemo, radiation, or invasive surgery, or perhaps a combination of all three. Despite these interventions, many patients died. It was a pretty hopeless time.

As recent as 7 years ago, targeted treatments were mostly theoretical, and immunotherapy a pipe dream. Today, both are realities and saving lives. The winds of change are blowing and hope is in the air.

I can tell you what it feels like to come to terms with a terminal illness, how difficult it is to wrap your head around dying before you are 35. I can tell you what it feels like to be written off because there really isn’t anything out there that will really help. But, I can also tell you about hope. Hope saved my life.

In the 7 years since I was diagnosed and 5 years since I was deemed “terminal” so much has happened in lung cancer research. In those days, physicians only really knew about two potential genetic drivers, now we know of 25 and learning of more everyday. In that time, pharmaceutical companies have developed targeted kinase inhibitors (TKIs) that target specific genetic anomalies or fusions such as EGFR, ALK, and ROS1 and testing others like MEK, KRAS and Her2. These compounds are better known as targeted therapies and are far more effective in treating patients with these targets than chemo. In many cases, these treatments are pills that one takes daily, they have milder side effects than chemo and can allow patients to live a fairly normal life. We have come so far in this area that second and even third generation drugs are being developed to address resistance to earlier drug compounds.

Another area that has revolutionized treatment is immunotherapy. Just in the last few years the FDA approved two immunotherapy agents for both non-squamous cell lung cancer and squamous cell lung cancer. These agents boost the use the body’s own immune system to target and kill cancer cells. For the first time in many years there is real hope for patients that have squamous cell lung cancer one of the most aggressive and deadly types of lung cancer.

In addition to new treatment options, and the discovery of numerous genetic drivers of lung cancer, diagnostic techniques and surgical interventions have become better and less invasive for patients. The use of computerized tomography (CT scans) and positron emission tomography (PET scans) allow physicians to see anomalies at earlier stages and allow for more accurate diagnoses. In addition to this, screening of high-risk populations using low dose CTs allows physicians to follow these patients and diagnose them at earlier stages of the disease, increasing survivorship and quality of life. Not only does this save lives, but it also saves money as these patients require less intervention and can be cured when diagnosed at stage 1 or 2, where surgery alone is curative. Video-assisted thoracoscopic surgery or VATS allows patients to undergo surgery, most often a lobectomy (removal of one or more lobes of the lung) with minimal invasion and less risk of complications from surgery, making recovery quicker and easier on the patient and their caregivers.

All these breakthroughs have been achieved despite minimal research funding allocation by governments and private donors. Regardless, patients have a real reason to hope as the dedication of researchers and physicians who are making these discoveries are ushering in a new era in lung cancer research and treatment. One can only imagine the possibilities if there was even small increase in the amount of funding given to this disease group. One can always hope.

screen-shot-2016-11-12-at-4-48-37-pm