Tag: LCSM

Stability ain’t what its cracked up to be!

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This is my favorite time of year. I don’t know what it is about the weeks leading up to the holidays, but I just love them. My heart is warmed by twinkling lights adorning all the neighborhood houses and people seem just a little bit more cheerful. Just the other day it snowed, not just a dusting either, a real good snow. It was magnificent. Looking out our windows Sunday night and seeing a fluffy white blanket covering everything made me giddy. Everything seemed magical and pristine.

Winter Wonderland
Guess we have to shovel out the car
Perfect Finn Prints
Doorway to Narnia
Most wonderful time of the year

That day I spent the day in my jammies watching movies with the pups and a good cup of tea, it was heaven! A stark contrast to the hustle and bustle of the week before. It was a scan/check-in week preceded by a very long scare & scan day the previous Friday. Needless to say I had an x-ray, two chest CTs (one abdominal and pelvic), an MRI, an ECG an ECHO as well as blood work (thank you port) all in the span of 5 days and my body was feeling a little worse for wear. Thankfully, the scare turned out to be a chest infection and nothing more. Amidst all that my scans still say stable.

img_4782
Blargh!!

I am learning to live with stable, even though I don’t like it, even though I’d feel so much more secure if I was NED. NED allowed me imagine no cancer in my body, whether it was true or not, I don’t know. Its hard and sometimes torturous knowing that inside you there is a ticking time bomb or in my case many little time bombs just waiting to grow and spread (and kill you). The uncertainty makes it easy to go down the rabbit hole so much so that the thoughts permeate into everything, even my seasonal happiness.

While trimming the tree, I caught myself thinking… Wow! This is our first Christmas in this house, how truly amazing. I wonder if it will be my last? I wonder how many more Christmases I’ll get? I wonder if Patrick will decorate like this after I’m gone?

You see how easy it can be to get sucked in.

I don’t know if it is because I live my life in three week increments or six week milestones, but looking at a full year is truly daunting and scary. I felt the same way planning my wedding. It felt like a mixture of joy and sheer terror! Life can change so quickly. I have seen it happen too many times.

And then I remember to breathe.

Despite all these crazy emotions and being sick (my lungs sound like bagpipes warming up), my soul is happy. I find myself sitting on my couch sometimes, and I look around, and I am awed and I am grateful for all the blessings I have in my life. My husband, my family, my friends, my dogs, my home, and my health. My life is so rich! That is what I need to hold on to. That is the light that guides me out of the rabbit hole.

 

AM

 

Magic Happens

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

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

 

 

The Need for Lung Cancer Literacy

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November 1st marked lung cancer awareness month in Canada and the US. It received little fan-fare and still largely goes un-noticed. After all we don’t have cute logos, fancy ribbons, big marketing campaigns, and many media outlets just don’t pick up the lung cancer story. So what do we have? We have numbers, we have stigma, and we have hope.

screen-shot-2016-11-04-at-8-16-07-pmEvery year 28,4001 Canadians and 221,2002 Americans are diagnosed with lung cancer. Of those diagnosed, 20,8003 in Canada and 157,4994 in the US will have their lives taken from this disease. The truth is that while many other cancers have improved 5-year survival rates, lung cancer still remains one of the lowest at about 17%5.

One of the many reasons for this in my humble opinion is the lack of lung cancer literacy, or for lack of better words awareness. With most diseases, awareness doesn’t always mean action, but for us, awareness and education is key in convincing people to act. Most North Americans think that breast cancer is the largest cancer killer, but in fact, it is lung cancer. Actually, lung cancer takes more lives than breast, colorectal, and prostate cancers combined6.

screen-shot-2016-11-04-at-8-16-44-pmIf one has asked me what type of cancer I thought I may get in my lifetime, seven years ago before lung cancer happened to me, I would have thought it would be breast cancer. After all, I am a woman with breasts and like many, I didn’t think that because I was human and had lungs that I’d be at risk. The reality is, one of the fastest growing segments in lung cancer is the population of young, non/never smokers (17.9%)7. Add to that the population of people who had previously quit smoking (60%)8, and you begin to get a different picture of lung cancer.

The sad truth is that lung cancer is usually diagnosed in late stages (Stage 3 and 4) meaning the disease is already advanced, complicated and difficult to treat. Another reality faced by patients and their caregivers is the stigma associated with the disease. We have known the connection between tobacco products and cancer for decades, the problem is the widespread assumption that it is the only cause of lung cancer, leading to a blame the victim mentality. The truth is, the greatest risk factor for getting lung cancer is having lungs. That of course is followed by tobacco, radon, genetic and many unknown factors.

Lung cancer is not just one disease, it is far more complicated than was once thought. It is categorized as small cell (SCLC) or non-small cell (NSCLC), but can then further be divided by cell type and beyond. In the past decade alone, they have discovered numerous genetic drivers to lung cancer, each requiring a treatment plan that caters to the nature of the cancer.

Despite the abysmal mortality rate and the growing number of newly diagnosed patients, funding for lung cancer research is grossly disproportionate. In the US the National Institute of Health Research (NIH) calculated the dollars allocated per death across many disease areas and found that lung cancer received only $1479 as compared to $2131 for heart disease, $5,804 for colon cancer, $19,250 for breast, and $9,647 for all cancers9. In Canada, only 7% of cancer specific government research funding is allocated to lung cancer but what is worse is less than 1% of private cancer donations goes towards lung cancer research10.

It may sound very doom and gloom, but there are many rays of hope. Through the dedication of researchers, oncologists, nurses, pathologists, patients, and so many more, a number of breakthroughs have been made in diagnostics, less invasive surgical options, revolutionary treatments such as targeted therapies and immunotherapy and are being used in clinics today. The winds of change are blowing and with more awareness and research dollars, real change can be made. You can help by donating to lung cancer research, volunteering at a local organization, being compassionate to patients, or by sharing this article.

References:

1. Canadian Cancer Society – 2016 Canadian Cancer Statistics. Available at: http://www.cancer.ca/~/media/cancer. ca/CW/cancer information/cancer 101/Canadian cancer statistics/Canadian-Cancer-Statistics-2016-EN.pdf?la=en. Last accessed on October 19, 2016.

2. American Cancer Society. Cancer Facts & Figures 2015. Atlanta: American Cancer Society; 2015. pp.4.

3. Canadian Cancer Society – 2016 Canadian Cancer Statistics. Available at: http://www.cancer.ca/~/media/cancer. ca/CW/cancer information/cancer 101/Canadian cancer statistics/Canadian-Cancer-Statistics-2016-EN.pdf?la=en. Last accessed on October 19, 2016.

4. Centers for Disease Control and Detection: Deaths: National Vital Statistics Report, Final Data for 2012. NVSR Volume 63, Number 9. 85 pp. (PHS) 2014 – 1120, http://www.cdc.gov/nchs/data/nvsr63/nvsr63_09.pdf

5. Lung Cancer Canada. 2015 Faces of Lung Cancer Report, Toronto: Lung Cancer Canada, 2015. pp6.

6. Lung Cancer Canada. 2015Faces of Lung Cancer Report, Toronto: Lung Cancer Canada, 2015. pp6.

7. Centers for Disease and Prevention. Morbidity and Mortality Weekly Report, “Cigarette Smoking Among Adults- United States. 2006,” November 9, 2007/56(44): 1157-1161, Table 2.

8. Centers for Disease and Prevention. Morbidity and Mortality Weekly Report, “Cigarette Smoking Among Adults- United States. 2006,” November 9, 2007/56(44): 1157-1161, Table 2.

9. Funding Source: http://report.nih.gov/categorical_spending.aspx Source of Actual Deaths: Centers for Disease Control and Detection: Deaths: National Vital Statistics Reports, Final Data for 2012. NVSR Volume 63, Number 9. 85pp. (PHS) 2014 – 1120 http://www.cdc.gov/nchs/data/nvsr/nvsr63/nvsr63-09.pdf

10. Canadian Cancer Research Alliance 2007, CRA 2009, Canadian Cancer Society 2010.

The New Face of Lung Cancer

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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.

 

 

 

A Personal Update

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I’d like to apologize for not posting my ASCO day 3 & 4 Update, but since I got home it has been a blur of appointments and dealing with a pesky head cold that I seemed to have caught in Chicago. So I decided I would write a personal update since I actually have something to update after a very long time.

I have been incredibly lucky for the past five years to be on a TKI (Targeted Kinase Inhibitor) that has effectively controlled my lung cancer. I can honestly say that I didn’t think it would work so well for so long, but it did and it has. Now after a number of months of careful surveillance and comparison, I have had slow but consistent progress. My cancer has finally outsmarted my drug. Without getting into too many technical details here, ALK+ patients have a number of places where we can develop resistance to our medications. I promise, that I will explain this phenomena in a later post, but suffice it to say, I needed to make a decision.

There has been a great deal of progress made in the TKIs ALK+ patients can take. They have developed second and even third generation drugs that address some of the “problems” with the first generation drugs have. Mainly, crossing the blood-brain barrier and addressing the variety or spots on the protein where we experience drug resistance. So with careful consideration and consultation with my oncologist, I have decided to enrol in a phase I/II trial at Princess Margaret. It is another reason I wanted to go to ASCO, so I could learn what the latest and greatest treatment options are for patients like myself. More on that soon!!

This week, I have had a battery of diagnostic tests, it began with a biopsy, so we could see exactly what is going on in my tumors. Although this wasn’t 100% necessary, the tissue on file so to speak is 7 years old and may not represent an accurate picture of what is going on. So for me, it was an easy decision to make and now we have a fresh sample. After that, I had an MRI of my brain, a new experience for me. It wasn’t a wholly unpleasant experience, but man is it noisy!! Clanks and bonks and at some point I felt like I was in an early 90’s Nintendo game.

Today I had my port inserted, something I wish I had done years ago! After 6 months of infusions and 5 years on a trial protocol that required frequent CTs with IV contrast, my veins aren’t what they used to be and I was tired of the anxiety of whether or not the technicians could get a vein or not. Usually it was not and I’d end up looking like a heroin addict, bruised and scabby from multiple pokes. So in it went. As I write this, I am still doped up, so I hope this all makes sense! Tomorrow I go for a bone scan and Monday I go for my screening exam and get to use my handy dandy new port for the first time. In a warped way, I am looking forward to Monday so that I can find out the results of both my latest CT and biopsy. I will also get randomized and get to start.

After being NED (no evidence of disease) for so long, it’s a bit of a mind f*ck having to go through all of this again. I wonder what my reaction to the new meds will be? What will my side effects be? One of the new and more common side effects of this drug is hypercholesterolemia, which kind of sucks, but is a small price to pay. If I do have this, I’m sure it will be controlled with more meds. What I’m really hoping is that my edema will go away! With my luck though, it probably won’t, but fingers crossed!

So it is a brave new world I’m entering and I am hopeful and excited for what the future holds. The last 5 years have been unexpectedly eventful and productive. It is strange looking back on all that I have done and accomplished, given I never thought I’d survive 5 years. Now I am looking forward to the next 5 and the 5 after that. My painkillers are kicking in so before I get completely incoherent and nonsensical, I will end here. Thanks for reading and keep your peepers peeled for my ASCO update and future posts.

I’ve got my eyes on you Momma.
Hey Momma I’m right here by your side k
My nurses. Shhhh Momma is tryin to sleep!

AM

ASCO Overview Day 1 & 2

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IMG_3825Well I made it! By the time I got to my hotel after taking the “L” into the city, I wasn’t able to attend any of the sessions presented on Friday June 3rd, so I did what any keener would do and went to the McCormack Center to pick up my registration package and scope out the place. The place was HUGE!!! Still undaunted I found my way to registration and afterwards went to check out the Advocates lounge. It was here I found some of my tribe.

There is a truly amazing phenomenon that happens when you meet others like you. There is an immediate kinship and bond forged through mutual experience that immediately makes friends out of strangers. Mind you it helps that many of these individuals are my online heroes and I follow them on Twitter, chat, or through their blog. Who ever said you shouldn’t meet your heroes was dead wrong! I was immediately swept into their kindness and invited to dinner. How could I not love these people, when we have both cancer and food in common?!

Exhibition Hall
Lung Session
The ASCO Madness, just you and 40000 friends

Day 2 was in earnest my first day at the conference. As my first time here at ASCO, I can honestly say I was overwhelmed by the sheer enormity of not only the facility, but with the number of participants, presenters and exhibitions. To give you an idea, I walked 10km yesterday and that was only in the McCormack Center. I was most interested in the lung cancer track, for obvious reasons, so it was a busy day. Poster sessions began at 8am and ended at 11, followed by oral sessions at 1 and at 3. In between, the advocacy lounge generously provided lunch. Because ASCO is so huge, many sessions overlapped and besides being in two places at once, I decided to view some of the sessions at a later time (thank goodness all sessions are recorded). At 5, I attended Lucy Kalnithi’s “book club” session where she discussed her late husband Paul’s book When Breath Becomes Air. It was a beautiful insight into their lives as patient/supporter and as clinicians. From there, I ran up to the official ASCO Tweet-up where I got to meet a few more individuals I know from the web. All in all, it was an eventful and full day at the conference.

Before falling into bed, I looked over all the handouts I had collected and planned my day for tomorrow.

First blog post

This is the excerpt for your very first post.

These are My ScarsLeave a comment

As Jerry Seinfeld said “Hellooooooooo”. Welcome to These are My Scars. In a very long and arduous decision, I have closed my previous site and blog and decided to begin anew here. If you would like to read previous posts, you can always view them at http://thesearemyscarsorg.tumblr.com at least until I familiarize myself on how to archive here.

My goal with this blog is to not only share in some of my personal experiences, but to serve as a resource for others who have been diagnosed with lung cancer. I have always thought that being “in the know” was important, but even more so when you are trying to advocate for yourself and your loved ones. There is so much information out there, but it can be daunting for a patient to find it or even understand it, which is where I want to fill the gap.

As I type, I am sitting in the airport lounge getting ready to head to the Mecca of oncology meetings ASCO, where I hope to fill my brain with lots of useful information that I can share with you. Stay tuned and please forgive our appearance while we build the blog.

Anne Marie