Tag Archives: Diane Legg

Tough love for lung cancer

November is Lung Cancer Awareness Month. I have said before that I don’t do months. Lung cancer is weeks, days, minutes, seconds for me. Year round.

In November many of my fellow advocates devote a lot of time to raising awareness–the squishiest form of advocacy. This year I am seeing a lot of upbeat photos of people who don’t look for a minute as if they are living with a disease like lung cancer.

Passing for healthy has been one of my favorite party tricks. At the moment, there’s not a chance in hell I could pull it off.

So here’s the thing. I believe in positivity while also keeping it real. Really real. And the truth is, those pretty pictures are each of us at our best moment.

I don’t believe people care more about something like lung cancer when the message is that people are living. Yes–it is inspirational for our community. But the rest of the world needs to hear the other side. That even though anybody can get lung cancer, very few will survive it.

My friend Andy Lindsay died two weeks ago, almost two years to the day after he was literally at the top of the world. If lung cancer can kill Andy Lindsay, it can kill anybody.

You are aware of my current situation. Having exhausted all TKI’s for those of us who are ALK+, I am back to non-targeted treatments–infinitely less effective and with a greater range of side effects. My friend Diane Legg, diagnosed with lung cancer months before I was, found out two weeks ago that she’s got three brain mets–after sixteen years of her cancer staying confined to her lungs.

Diane and I remain exceptions–having lived far longer than anyone thought possible. But I’d be lying if I said it was getting any easier. Not only is cancer and continuous treatment beating the shit out of us, we each have become close to hundreds of people who have passed away. Wrap your head around that one.

So yes. Let’s stay positive and hopeful. But let’s also get it right–both out of respect for those who have died but also for the sake of those who are still living. We need more money for research and we need it yesterday. Because having an opportunity to get older if you are going to age out of treatment options is one hell of a bitter pill to swallow.

Diane Legg and the PMC

My friend Diane, a firecracker of a fundraiser for lung cancer, is having to make some adjustments this year due to the pandemic. She sent out this letter to her friends and supporters and I asked her permission to reprint it. Please consider helping her in this quest! xo


Dear Friends & Family, I hope this email finds you well and safe! What a crazy time we are currently living. I don’t think any of us expected to experience a pandemic like this in our lifetimes. As I write, I am “sequestered” at our home in Maine. I’ve been in Maine for over 12 weeks. The first eight weeks I was by myself (well I did have Ziggy, our dog with me). Dean came up for weeks 8 & 9 but he had to go back to Boston on Memorial Day, as his work from home was winding down. Cole and Will joined me week 10 and are with me for the remainder of the summer. Dave continues to go to work every day as Charm Sciences is an essential business. We’re trying to figure out how best to keep me “safe” but still allow he and Dean to visit us in Maine periodically.
Like so many things in our lives right now, things are uncertain. Many activities and events that we participate in are on hold, postponed, or canceled for the time being. Our annual Pan Mass Challenge (PMC), an annual bike-a-thon across Massachusetts, benefiting lung cancer research at Dana Farber Cancer Institute (DFCI), is no different. Usually the first week of August, Dave & I join more than 6700 cyclists and 4000 volunteers to raise money for life-saving cancer research and treatment at Dana Farber. This was to be Dave’s 12th PMC and my 9th. This year the PMC is being “re-imagined”, and both Dave and I are trying to figure how that is going to look for us.
Riding in large groups is not going to be an option for us this year. Dave is planning a Pan-Mass ride with some fellow teammates but is looking at perhaps a northern route rather than the typical southern one…they are still figuring out the logistics. The good news is, if the weather doesn’t look good the first weekend of August, they can choose a different weekend. I may join them for a leg or two of their ride but again will depend on what’s happening in our world at that time – for me riding in any group may not be an option.
So what will I do? I have been inspired by a story about another Stage IV lung cancer fighter, Isabella de la Houssaye, who just completed a cross country cycling trip from San Diego, CA to St Augustine, FL … that wasn’t quite enough so she added an additional leg from FL to Washington DC….all to raise awareness about lung cancer. You can read her story here: https://ridewithgps.com/journal/4698-user-spotlight-isabella-de-la-houssaye?otu= and on her website http://www.bikebreathebelieve.org. I’ve decided since there will be no actual PMC this year, I am going to do my own “virtual” cross country ride using my Peloton and road bike…3,000 miles by year end…hopefully much sooner than that!! I will keep you abreast of my progress via social media!
Our mission at LUNGSTRONG is to raise funds for innovative research so that lung cancer is a treatable disease and no longer fatal. 100% of the money that Team LUNGSTRONG raises goes towards much needed Lung Cancer Research under the direction of Dr. Pasi Janne, Director of the Lowe Center of Thoracic Research at DFCI. Dana Farber has been leading the way in lung cancer research and we know that the money that Team LUNGSTRONG raises is helping them find a cure. In the last 10 years, Team LUNGSTRONG has raised close to $3.5 Million!! Dr. Janne has used the money we raised to support a number of his junior investigators to fund development projects and “out of the box” research. To date, we’ve helped fund Dr. Oxnard’s work in circulating cancer cells, Dr. Ozers work in small cell lung cancer, and this year Dr. Cheng’s work on genetic changes in blood from immunotherapy. In addition, the money we raise is funding some of the research data specialists at DFCI that are working on the correlative science – looking at markers in tissue and blood samples. I’ve attached a letter from Dr. Janne that outlines the specific work that LUNGSTRONG has funded so you if you are interested in it, you can read the details. The bottom line is, the work that we are funding is truly making a difference in the fight against lung cancer. Our goal this year for our team of close to 90 riders, is to raise $500,000, Dave and I hope to raise $20,000 together.
Due to the current economic situation, the PMC has waived all fundraising minimums but this does not mean that the need for cancer research is less important. In fact funding cancer research is even more critical and funding lung cancer remains crucial to changing the face of this disease. We recognize that these are hard and uncertain times, if you are interested and able to support our ride you can do so by sending us a check, payable to PMC, or to donate on-line go to: http://www2.pmc.org/profile/DL0173 or http://www2.pmc.org/profile/DL0113. No donation is too small and if you are unable to donate – no worries, we appreciate all of the thoughts and prayers you send our way! Also, it doesn’t matter whose link you donate to…we share between us!!
Every day I feel incredibly blessed that I am still here and that I’m living well with Stage IV lung cancer, but this is not the norm. It’s been 2 1/2 years that I have been on this clinical trial. Currently, the standard of care, for my type of lung cancer, works on average for 19 months before becoming resistant. The clinical trial that I am on is specifically to see if this combination of drugs will give patients a longer time period before becoming resistant. This week my scans showed that my cancer continues to be stable, so this clinical trial is doing what we hoped it would. I want others to have this same opportunity.
Today only 18% of the people diagnosed with lung cancer live more than 5 years. It’s our dream that one day lung cancer will be treated as a chronic disease not a terminal one! We want to be a part of changing the stigma and to reverse the statistics!
Dana Farber is a leader in innovative lung cancer research and is working diligently to find a cure. There has been more progress in lung cancer research in the past 5 years than there has been in the last 30 years! We are blessed to live so close to Boston and to have this kind of care accessible to us. We are very excited to be part of a team that will continue to support this critical work, giving us the hope that we need.
I know that many people have been adversely affected by covid-19 and the pandemic. Know we are thinking of you and hope that you and your family are well and safe. We both feel extremely blessed for the support that our families and friends give us year after year, both emotionally and monetarily.
Many thanks for your continued love and support of our family,
Diane & David Legg
2 Main Street #735, Harrison, ME 04040
PS – Donations are tax deductible and 100% will go to the Dana Farber Cancer Institute. If your employer has a matching gift program, ask your Human Resource department for a form and follow the process for matches. To learn more about the PMC, visit http://www.pmc.org.
PSS – Please feel free to forward this email to you friends and family!!

This girl’s busy

At WCLC
with the famous Janet Freeman-Daly

Getting home from Barcelona was a bit of an adventure as our flight was delayed and it looked as if I would miss the connection in Zurich. However there were three of us traveling to Boston and when we landed in Zurich, they had a van waiting on the tarmac. We were zipped off to two passport checks (everyone running) and then through a tunnel under the runway to our waiting plane. Very James Bond.

There was no time to indulge in jet lag as I had a commitment the day after my arrival home. An awards ceremony, Xconomy Boston 2019 . I had been nominated in the Patients First category and was one of three finalists. It was an honor to be nominated but I also felt I was way out of my league. However the prospect of sitting at a table for the evening with my oncologist Alice Shaw and her husband Stan (I work with Stan at HMS)–this was reason enough be in attendance.

Well surprise, surprise when they announced my name as a winner.

Alice Shaw, Linnea Olson, Stan Shaw

It was a fun, fun evening out with two of my favorite people. Two days later I was in Amesbury for the annual Live It Up! LUNGSTRONG, hosted by Diane Legg and her husband Dave. Held at their charming Victorian in Amesbury, the party looked as if it might be rained out but the cadre of volunteers–friends of the Leggs and their three sons–kept the food and good cheer coming.

Diane, who has been living with lung cancer for more than fifteen years now, founded LUNGSTRONG in 2011. This grassroots organization has now raised over $4,000,000 (yes, four MILLION dollars) for lung cancer research. Diane is not only a dear friend, she is one of my personal heroes.

Fatigue slowed me down a bit for the next few days, but I finally had a window in which to start pulling together my new living space. And then a guest appearance at a town hall meeting for Foundation Medicine on Thursday followed by reception at Harvard Medical School that evening and then a presentation to an international gathering of YPO the following afternoon.

At a time in our lives where so many of my friends are retiring, I often feel as if I am just starting my career. The good news is I love what I am doing.

This week I drove to NYC will my friend Bill Burke for the opening of his show with Lois Connor at Fordham University’s Idiko Butler Gallery (September 23–November 13 2019). Good times. The following morning I was to speak again at Harvard Medical School so I caught an early flight back. Friday I had scans and that evening I began training for a new volunteer position with C4RJ–Communities for Restorative Justice. I am passionate about criminal justice reform and it will be good to get out of the cancer wheelhouse just a bit.

I flew to Philadelphia this morning, and tomorrow I will be sitting on a panel at Fisher Scientific’s Allentown Innovation Summit–participating in a discussion on decentralized clinical trials. Back home on Wednesday and in Boston again on Friday for my scan review.

When first diagnosed with lung cancer, I made a decision that I’d just keep walking–because most people die in a bed. Motion creates an arc rather than a point in time.

No lying down on the job for me. My goal is to arc/flame out.

Spotlight on an advocate: Day 13

*In November (the month dedicated to lung cancer awareness), bloggers are highlighting a different advocate everyday. My first post is about Diane Legg and it is on Day 13.

It was March of 2006. Dana Reeves had just died and I was reeling. As a young woman with lung cancer, I’d hitched my star to Dana’s, and her loss felt terribly personal. But then I happened to pick up a copy of the Newburyport Daily News. Inside was a story about a young mother of three with lung cancer; Diane Legg. I found her phone number online and called her that afternoon. We chatted a couple more times but our plans to have coffee somehow never materialized.

Diane Legg and Hildy Grossman: two super advocates!

Diane Legg and Hildy Grossman: two super advocates!

In 2008 my path and Diane’s crossed once again. I was attending Lung Cancer Alliance’s annual Shine a Light on Lung Cancer at the Prudential Center in Boston because my trial buddy Kevin Brumett was speaking—Kevin and I were early participants in the first clinical trial for an ALK inhibitor. Well, as a co-chairperson, Diane was there too and we finally got to meet. And the rest, as they say, is history.

I treasure Diane as a close friend but also as an inspiration; the first person I saw a little further down this path than myself.

Diane was only 42 when she was diagnosed with NSCLC. She’d strained a muscle while picking up her one year old and when the pain didn’t go away, she was scanned to rule out a pulmonary embolism. What they found instead was lung cancer.

The fact that Diane has lung cancer is not the reason she became a passionate advocate. Instead it was the death of a close family friend who had been diagnosed at the age of 43 just a few months prior to Diane. Devastated by how quickly her friend passed, Diane was galvanized into action: “I turned her loss into advocacy.”

Her first act of advocacy was to become co-chair of the Massachusetts chapter of the Lung Cancer Alliance. All those Shine A Light on Lung Cancer events? That was Diane’s brainchild. She also teamed with her husband Dave to form TeamLUNGStrong, part of the annual Pan-Mass Challenge. Monies that they raise are earmarked for lung cancer research at Dana Farber and Massachusetts General Hospital. Despite the fact that her cancer is now advanced Diane herself rides in the PMC (amazing, truly amazing).

I asked this mother of three and super advocate what motivates her. She responded very matter of factly that ‘you don’t have a choice, you just go on–everyday is a gift.’ And then I wondered what she would want if she could have anything in the world. Her answer? ‘Not to worry.’

Fitting somehow that this post is going up on Friday the 13th. Diane and I both had some really bad luck; non-smokers diagnosed with lung cancer at a young age. However, we also know when to count our blessings. More than a decade after diagnosis we’re still here. Through this journey we have had experiences and forged relationships that have helped make the unbearable bearable. Diane, I am grateful for all you do on behalf of everyone with lung cancer. And I am oh so proud to be your friend. ❤

#lcsm  #LCAM

Two!

David and Linnea:  photo by Billie McLane

David and Linnea: photo by Billie McLane

Time flies—an entire week has gone by since David and I attended Dave and Diane Legg’s Live It Up LUNGstrong fundraiser. A combination party/silent auction, this mega party is an annual event to raise awareness and money for lung cancer research.

Diagnosed with cancer more than eight years ago, Diane Legg immediately poured her almost endless energy into advocacy, including many years as co-chair of the New England Chapter of The Lung Cancer Alliance. Diane was featured in an article in The Boston Globe not long after my own diagnosis and I decided to call her. Although we talked on the phone several times, a few more years passed before we crossed paths; now we are close friends. My admiration for her is boundless—as is my gratitude for all the work she and her family do on behalf of all of us with lung cancer.

In addition to advocacy, Diane is committed to pushing herself to incredible physical distances, and this year she will be riding in a leg of the Pan Mass Challenge for the second time. Keep in mind that she has stage IV lung cancer.

But back to the party:  Live it Up LUNGSTRONG was both fun and incredibly meaningful. A plethora of delicious bite sized delicacies, prepared by a loyal cadre of volunteers and served by Amesbury students. Wonderful music, a cash bar and a rousing speech by Diane herself, as well as her two oncologists, Dr. Jeffrey Engleman of MGH and Dr. Pasi Jänne of Dana Farber. And then Diane asked the lung cancer survivors in the crowd to come forward. Arms around each other’s shoulders, we joined together for one powerful group hug.

Carol Cormier, Diane Legg, Ann Campanella, Linnea Duff, Liz Morris photo by Billie McLane

Carol Cormier, Diane Legg, Ann Campanella, Linnea Duff, Liz Morris
photo by Billie McLane

 In Diane’s own words, more about her upcoming ride:

Once again both Dave & I committed to raising money for cancer research at the Dana Farber Cancer Institute (DFCI) by riding in the 2013 Pan Mass Challenge (PMC), an annual bike-a-thon across Massachusetts. The PMC channels 100% of every rider-raised dollar directly to Dana Farber Cancer Institute. It’s the most successful fundraising event for charity in the nation, and also among the leanest. It’s one of the reasons that we ride and support the mission. We also ride because as you may know…I am living with Stage IV lung cancer; I’m a rare 8 year fighter, so this is also personal.

On the first weekend of August we will join more than 5,400 cyclists; Dave will be riding in his 5th PMC and I will be riding in my 2nd. Although the PMC is actually a 2 day ride, Dave adds a third day to the start of the trip and will be riding from the NY/MA border to Sturbridge on Friday. In total, Dave, along with a few of our fellow LUNGSTRONG teammates will be riding 300 miles! This year the Friday ride, which is organized by Brielle’s Brigade, will be extra special and bittersweet, sadly Brielle lost her battle with cancer shortly after last year’s PMC, she was just 13 years old.

I will be riding in my 2nd PMC and will be attempting to ride the 2-day route which goes from Wellesley to Provincetown. (Last year I rode one day and 84 miles.) This route is 164 miles. As hard as this ride is for me, both physically and emotionally, I ride because I can. Most Stage IV cancer patients can’t.
Many of you have generously supported us year after year and for that we are extremely grateful. 100% of the money that Team LUNGstrong raises goes towards Lung Cancer Research at DFCI, under the direction of Dr. Bruce Johnson. Dana Farber has been leading the way in lung cancer research and we hope that someday soon they will be able find a cure. 

Although I have advanced lung cancer, aside from my initial surgery and adjunct chemo in 2004 – 2005, I have not been in therapy. The reason I have not started treatment is that the treatments today are not cures and only work for a limited time. I have been holding out in the hopes that better therapies will be found and developed. I am fortunate that the cancer is slow growing and not overly aggressive; this can change in the blink of an eye. In the meantime, I am living a very full & rich life. I feel extremely blessed to be able to ride with Dave and the rest of Team LUNGSTRONG in the PMC.

We have witnessed many friends battle this disease. A disease, quite frankly, that gets far too little attention and continues to be stigmatized. We want to be a part of changing the stigma and to reverse the statistics! Today only 16% of the people diagnosed with lung cancer live more than 5 years. It is the leading cause of cancer deaths, killing more people than breast, colon, pancreatic and prostrate combined! This year alone, more than 240,000 people will be diagnosed with lung cancer and over 160,000 people will die from the disease.

As I mentioned, DFCI is a leader in innovative lung cancer research and is working diligently to find a cure. There has been more progress in lung cancer research in the past 5 years than there has been in the last 30 years. We are blessed to live so close to Boston and to have this kind of care accessible to us. We are excited to be part of a team that will continue to support this critical work, giving us the hope that we need.

If you are interested in supporting Diane and David Legg or any of their other teammates for the 2013 Pan Mass Challenge, please follow this link: Team LUNGSTRONG.

 

 

 

Pan-Mass Challenge and my extraordinary friend Diane Legg

Since its inception in 1980, the annual Pan-Mass Challenge has been raising funds for cancer research and treatment at the Dana Farber Cancer Institute in Boston. A giant bike-a-thon-love-fest, the Pan-Mass draws thousands of riders from across the country, each of whom commit to meeting (and often exceeding) a minimum pledge based on the chosen route and distance that they will ride. 100% of the money raised by riders goes to the Jimmy Fund, and then in turn, to Dana Farber.

Sometimes the riders themselves are cancer survivors. This year, (today–8/4/12) my friend Diane Legg, who shares my preference for the term surviving cancer; will be amongst them. I became acquainted with Diane shortly after my own diagnosis when an article about her fight with lung cancer was featured in the Boston Globe. I contacted her and we have, in one way or another, been partners on this journey ever since.

Diane’s diagnosis propelled her directly into advocacy, and she is cochair of the New England Chapter of the Lung Cancer Alliance as well as director of LUNGstrong Inc, the team that Diane will, along with her husband David, be riding for.  A commercial featuring Diane:

And for a more in depth look, check out this interview with Diane by Heather Unruh of Channel 5, or Diane’s PMC page.

In a word, amazing.