Magic Happens

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.

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.

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.

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

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.

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The New Face of Lung Cancer

Receiving a cancer diagnosis is devastating and life altering, but as a young adult with lung cancer the challenge was even more daunting. Like most people I was oblivious that I could get lung cancer, after all as a young woman I thought I was more likely to get breast cancer because I had breasts. I never fathomed that because I had lungs I could get lung cancer2013-08-14-20-48-46. I know differently now.

Even after beating the odds of living 5 years beyond diagnosis, the first question I’m asked when people find out I am living with lung cancer is “did you smoke?” The idea that smoking causes lung cancer is so entrenched in our psyche that most people have no idea that up to 60%1 of lung cancer patients have either never smoked a day in their lives, or quit decades prior to their diagnosis resulting in an unfair stigma being placed on patients and their families.* The notion that someone deserves their disease is a ridiculous concept to me, but a 2010 national poll showed more than one in five Canadians said they feel less sympathy for people with lung cancer than those with other cancers because of its link to smoking2.

I started down this road in 2009 when a small bump on my collarbone sent me to my doctor. Despite being unconcerned he sent me for an x-ray. That simple action would lead to the cascade of tests that would ultimately lead to the diagnosis of locally advanced adenocarcinoma of the lung. I am lucky! Things could have gone differently, I could have been inoperable, I could have been sent home, I could have been ignored, I have many friends who were, they didn’t get diagnosed until they were very sick, and sometimes even too late.

Once I peiced the tatters of my life back together, recurrence hit. I was devastated once again. My worst fears had come to pass. Beating Lung Cancer once was hard, I knew beating it twice would be damn near impossible, after all, at 17%, the five-year survival rate for lung cancer remains one of the lowest of all the major cancers3.

Finding out that I was a mutant was a relief…I know what you are thinking?? What! I’m sure most people would opt for a super power, but knowing I had an ALK-EML4 fusion meant I had options, so for me it was just as good. Prior to this revelation, I had few to no options left as a 32 year old stage 4 recurrent lung cancer patient. I was literally waiting to get sick so I could get treated and hope it wasn’t too late knowing full well I’d likely become one of the 85% of lung cancer patients. Dead.

I found information about a targeted therapy in clinical trial in a blog, much like this one. At the time I didn’t know anything about trials, targeted therapies, or driver mutations but I immediately jumped on this and looked for any way I could get in to the trial. Luckily there was a trial close to my home. In Sept. 2011 I was admitted and randomized to the drug group and began taking an ALK inhibitor. From that time until July of this year I had been NED (No Evidence of Disease, the best letters of the alphabet) and being unrmarkable was fantastic, but things change. I have always known that change would come, cancer is cunning and insidious.

Fear not dear reader, I am in a new trial for a third generarion targeted therapy. Targeted therapies mean I can live a fairly normal life. I don’t have to worry about neutropenia and infection, or other damaging side effects. I am able to live and travel. I am able to advocate and volunteer. I am able to plan a wedding, buy a house and plan on a long life ahead. It isn’t a cure, I will likely never be cured, but I gladly put my faith in research, after all it has given me five years and counting.

What’s disturbing is that every year, 26,100 Canadians will be diagnosed with lung cancer, 20,800 of those diagnosed will die4. It takes the lives of more Canadians than breast (5,000 lives), prostate (4,000 lives) and colorectal cancers (9,300 lives) combined5. Yet it is one of the most underfunded.

It is exciting times in lung cancer research and diagnosis. Less invasive procedures, genetic testing, screening procedures, and many new targeted therapies are being developed and improved upon and patients are benefitting in so many ways. From prolonged life and higher quality of life to the freedom of taking their treatment at home and living life unremarkable or not to the fullest. You may think, great! They don’t need funding or support, but in actuality, the disease receives only 7 per cent of cancer-specific government research funding and less than one per cent of private cancer donations6. I can only imagine what they could do with 3%.

Living with a chronic disease, isn’t about how many days we have to live, it’s the ability to live life in the days we have. When it is my time to leave this earth, I will do so having no regrets. I will know that I did not let my diagnosis define me but allowed me to be the person I was meant to be.

AM

*Current smokers had smoked 100 or more cigarettes and currently smoked. Current non-daily smokers were current smokers who smoked only on some days. Former smokers had smoked 100 or more cigarettes and no longer smoked at all7.

  1. Lung Cancer Canada, Lung Cancer Accessed at: http://www.lungcancercanada.ca/Lung-Cancer.aspx
  2. Ipsos MORI, Perceptions of Lung Cancer in Canada, An Ipsos MORI report for the Global Lung Cancer Coalition, April 2010. Accessed at: http://www.lungcancercanada.ca/ resources/site1/general/PDF/CanadaReport.pdf
  3. Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 64
  4. Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 50
  5. Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 50
  6. Canadian Cancer Research Alliance 2007, CRA 2009, Canadian Cancer Society 2010.
  7. Husten, C. G. (2009) How should we define light or intermittent smoking? Does it matter? Nicotine Tobacco Research 11(2), 111-121.

 

 

 

Its #LCAM

Please excuse the late post! I was truly hoping to have this post up earlier, much earlier infact, but today was one of those crazy days where life goes topsy turvy. Now before I get to that, I wanted to share a few Halloween pictures since this was our first in our new home. After prepaing for a barrage of kiddos, we ended up only getting about 20, so leftovers abound as evidenced by some of the pictures.

Okay now back to the crazy day! It was November 1st yesterday marking the beginning of Lung Cancer Awareness Month. Usually I am busy attending or participating in Lung Cancer Canada’s press conference where they present our Faces of Lung Cancer Report that details the current status of lung cancer in Canada, however this year it was held in our Nation’s Capitol, Ottawa. I made the choice to stay home in Toronto as I had a project of my own that I wanted to launch. Since I hadn’t gotten a good sleep the night before (hello 7am sleepy time) I was just getting up, when I got a call to see if I was available to do an interview. Of course I said yes! Anything to help raise awareness!!

So up I got and scrambled to get my self and the house ready incase they came here. Needless to say, I just had enough time to shower and meet with the interviewer. The topic of the interview was the rising incedence of lung cancer in women and lung cancer as a women’s health issue. Now far be it from me to tell the media that they missed the ball on that one (It was one of the main topics of the first Faces of Lung Cancer Report), but I answered as best as I could. It went well and I went home and set the PVR. Here is the link. If I had a wee bit more time, I know I could have avoided all the ums and ahs.

When all was said and done, I got to work on my #LCAM project. Some may or may not have noticed a new menu button on my home page, but one has been added and it links to my new storefront (Hope Happens). If you click it, you will find handmade jewelry made by yours truly. It is symbolic of the hope I have for myself and for others who have been diagnosed. All the jewelry features pearls as pearl is the colour for lung cancer. It is my hope that I can raise $21,000 by next year at this time for the almost 21000 Canadians who will die from this disease in 2016. So please take a look and help me to support research and programs for patients and their families.

AM

 

 

 

 

 

 

 

 

 

 

Its not always sunshine and roses

IMG_4004Life is hard enough under normal circumstances, but you get thrown into the lion’s den when you are diagnosed with cancer. Its something that changes you forever, whether you want it to or not. The diagnosis and the fallout usurp every fiber of who you are before cancer. If you are lucky, you get cured, but you can’t forget. Some of us are able to shake it off or move on and become survivors. I am not one of them.

I am not a survivor. I am clawing and groping my way through this. I am a liver. Everyday I live. Living is hard. Some days when I am lucky, I live very well. I wake up and I am refreshed and ready to take on the day. I don’t resent taking the pills that keep me alive and I happily gulp them down and start my day. I don’t hate my achy bones and I don’t frown at the image I see in the mirror, because it’s full of life and joy. I go out and take on the world like I own it, then come home and fall into bed feeling fully satisfied, and not once throughout the day do I feel like I have cancer. I sleep soundly. Those days are rare. Like a purple unicorn with a four-leafed clover rare.

Most of my days are quite different, I often wake up tired and achy. I’m sluggish and struggle to get through the day, despite the list of things to do. Cancer is almost always on my mind. With every ache, cough and bout of fatigue, I am reminded. Yet I claw and crawl and live.

Living with cancer is exhausting, you never get a break. There are no days off. It is an ongoing slog up hill, sometimes you get a reprieve and there’s a rock you can sit on, but you can’t sit long, because rocks are uncomfortable and you know you need to keep going.
Often that is exactly how it is. One foot in front of the other, wash-rinse-repeat. It is the only way to get through the day.

I have been living with cancer for over seven years and its great that I am alive to speak about it, but it isn’t without cost. It warps you. Your sense of self and how you relate to others is forever tainted by the experience of having and living with cancer. Living with cancer makes you myopic to the detriment of relationships and to our own selves.

It is a never-ending carousel of ups and downs and it is exhausting not being able to stop the ride. Maybe I sound pessimistic because I am in a funk, or maybe because I am waiting for results of the first CT on a new trial, or maybe its because I’ve had progression and I’m terrified that if this new trial doesn’t work I’m out of options, or maybe I’m tired, or maybe I’m just being real?!

Often times though I think there is an assumption that if you aren’t “sick” and “dying” you must just be fine and dandy. The thing is, we are “sick” and we are “dying”, just not yet. Most people just don’t or can’t understand this crazy life we live, how could they? We live in Bizarro Land! They don’t understand why we can’t commit to a vacation date six months down the road. We live scan-to-scan, doctor’s appointment to doctor’s appointment and we have been doing it since diagnosis. They don’t understand our dark humour. We joke about dying. If you can’t laugh about it, all you’d do is cry, I’d rather laugh. They think we are morbid; we talk about the songs they’d play at our funeral. I want a party, a full on party! I wasn’t a sad sop in life; I refuse to be one in death! The list goes on, and this is our life minus doctor’s appointments.

It can’t all be sunshine and roses, and I try to remember that struggling makes you a stronger person, that adversity makes you thankful for what you have. I have life. It isn’t an ideal life, but it is my life. It is a life that I am grateful for, that I will claw for, that I live for, as long as I can. I’m a Liver. I’m a Lifer.

** This peice was originally published on CKN (Cancer Knowledge Network) Aug 3rd 2016.

 

 

And sometimes life gets in the way…

Now I remember why I had a hard time blogging before. Life just gets in the way! I suppose that is a good thing, it means I’m busy doing and being. So let me update you on some of the doings.

There hasn’t been much change in life lately, it has actually been remarkably calm, which is a reprieve from the last six months, which were a whirlwind! Let me explain.

In February my husband (Patrick) and I took ownership of our very own house. Something I thought could and would never happen to me after getting sick, but there I was with keys in hand to my own little slice of heaven!

 

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Our slice of heaven

Almost immediately afterwards I began the search for a reliable and reasonable contractor to do the work we wanted to our home. Those who know me, know I’m a Type A, so I wanted everything done on a very detailed schedule and so far that wasn’t going my way. No shows, delayed appointments and “I’m too busy, maybe I can do it in August”, was how things were going.

Around the same time, a dear friend and fellow lung cancer survivor was going into her 3rd surgery and asked me to take care of her beloved doggies, how could I resist! All the while my own disease status was changing. For a few months, some very small spots began making an appearance on my CT results, and for those few months, we waited, watched and discussed what treatment might come next. We were going to be patient and cautious (very unlike me).

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As time ticked on we found a contractor and our renos got going and we started packing. Then unexpectedly on April 9th we brought home Finn our 2nd rescue dog. I have always been a softy for animals and when we heard about him a few days prior we knew he had to be part of our family. Of course we had talked about getting another dog once we had settled into the house, maybe in the fall or next year, but there we were and couldn’t be happier.

After spending an extra month in our apartment we finally were able to move, which was an ordeal in and unto itself!! I won’t go into detail but it gave me nosebleeds and spontaneous bouts of hysterical weeping. Thanks to my family, friends, and moving angels for getting us into our house.

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In mid May I met with Dr. R. my oncologist we looked at my latest scans, and it was decided that it was time to move. While I was busy moving he was busy doctoring and looked into a number of 2nd generation ALK inhibitors, some that have Health Canada approval but are not yet funded, and others that are in trial. There was a 3rd generation inhibitor too, that was the one we were looking at. Of course, that meant leaving the comfort of Lakeridge and going to swim with the big fishes at Princess Margaret. It meant I’d be entering into another trial. It also meant I would be leaving my care team of 5yrs.

The trial we wanted would be opening in June, and I would be patient #1. We scheduled all my preliminary scans and biopsy after my trip to ASCO (I know I still haven’t posted part 2) where I would actually learn about the drug I’d be taking. After getting back I was subjected to a barrage of appointments. CT, MRI, biopsy, ECG…but I started the drug.

It has been an interesting change. With the previous TKI (Tyrosine Kinase Inhibitor- AKA protein inhibitor) Crizotinib I had to eat a full on meal before taking it and couldn’t lie down for an hour or I’d be riding the porcelain bus. With Lorlatinib, I take it on an empty stomach once a day. Another major difference is I can now enter a bright room and not have an acid trip. My edema didn’t get better, I actually think its worse and I’ve noticed I seem to be more forgetful, but that could be due to the insomnia. Regardless of the challenges, I’m glad to be on the trial.

My first set of scans were completed last week and I am (not) patiently waiting to see the results. Anecdotally, it seems to be working, the persistent cough I had is mostly gone and the x-ray that was done 3wks ago showed or rather didn’t show a spot they had seen on my baseline. So I am hopeful and optimistic, but I am dying to see the real evidence. So I guess until then, I’ll have to keep calm and keep myself busy being and doing.

Until next time.

 

 

 

Update to the last Update ; P

UPDATE: I have taken my second dose and so far so good, breathing is better and my cough seems to be less intense. It could be placebo; it could be meds. I actually noticed a slight improvement yesterday too. Walking to the hospital from the car< I was very winded after going from the hospital to the car, I noticed I was ok. Today I can actually take a deep breath and not hack my head off!! WOO HOO HOPE!!