Profiles in Lung Cancer Day 5: Lysa Buonanno

In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show you the many faces of lung cancer.

Today's lung cancer survivor and spectacular advocate is Lysa Buonnano, who impresses me more each time I talk with her!

Twitter handle: @thelysabee

Blog: https://lysabuonanno.wordpress.com/

How are you connected with lung cancer? “I was diagnosed with Stage IV lung cancer four years ago. I have been through chemo, radiation, four surgeries, and now targeted drug therapy (my miracle pills).

How do you spend your time? “I have done eight advocacy trips in the past four or five months, such as testifying on Capitol Hill to increase funding for cancer research, and doing other public speaking. I'm also a Lifeline mentor with Lungevity, and I'm a peer reviewer for the Department of Defense's Lung Cancer Research Project. I do something to support people that I know with lung cancer at least once a week, such as researching treatment options, and helping someone in my support group get insurance benefits for treatment. When I’m not doing advocacy, I spend a lot of time with my daughter and my family.”

How did you first get involved with advocacy? “I connected with my local chapter of the American Lung Association, and I have become their spokesperson for television and other media. That led to getting paired up with the national office of the American Lung Association. They fly me to D.C. a couple of times a year to meet with congress.

Why are you an advocate? “This is my way of giving back, and contributing to other people. I want to give other survivors hope that their life can still carry on.”

What does a typical day look like for you? “I get up and turn on my tablet to check emails, and then I do an internet search. I have Google Alert set up for key word searches: ‘Lung Cancer,’ ‘Medical Research,’ and ‘ROS1 (my genetic mutation).’ After that I try to have time for coffee on my patio. I enjoy looking at my waterfall.”

What gives you hope?  Research, and other survivors. To know ten-year survivors and to learn about all the new clinical trials makes me think I'm going to be around for a while!

What is something that people may not know about you? “I’m teaching myself to paint. I’m not great, but it’s therapeutic.”

“I made these for my kids. My daughter is a big Marilyn Monroe fan, and my son plays the guitar.”

Do you have a guiding mantra you live by? “Every day is a gift… even on my not so great days.”

What else do you want people to know? “Anybody with lungs can get lung cancer. It doesn’t discriminate.”

To see yesterday's profile, go to http://bit.ly/1PnCeYI.

To see tomorrow's profile, go to http://bit.ly/1Wx8sXo.

To see the profiles for the entire month, you will find a link at http://lcsmchat.com/profiles-in-lung-cancer/.

Turtle Rescue, Meet Your Ambassadors, and More

Friends and Family,

What a week! First, there were turtle rescues.

No, not THAT kind. Rescue OF turtles, not BY Ninja Turtles. The second option would stretch believability even more than if I told you that I was still alive after nine years with lung cancer.

No, I'm talking about rescuing REAL turtles. That means we're back in Hawaii again, taking our usual morning beach walks. Only this walk was far from usual. First, we  came across this distressed-looking adult turtle, out of the water, baking in the sand.

While Genevieve called the Turtle Rescue hotline (yes, there is such a thing in Hawaii), I found a five gallon bucket and poured ocean water on the poor turtle.

Meanwhile, the Turtle Rescue man told Genevieve that finding this turtle on the beach either meant that it was in distress, or that it was taking a nap.

When I poured the bucket of water on the honu (Hawaiian for turtle), it immediately did a 180 degree spin in the sand and headed for the ocean at full speed.

So depending on your point of view, we either rescued this poor turtle, or made him grumpy by waking him up from a good nap.

Next, on the same walk, we come across a family with a young boy that has been stung by a Portuguese Man-of-War, which is a tiny blue bubble of a creature with a three-foot tale that feels like a bee sting on a string.

The boy had been touched on the leg, chest and arm, and welts were forming. Genevieve instructed us to get the white berries off the naupucka shrub that grows just about everywhere along the beach. We gathered berries, mom rubbed them in, and the boy immediately got some relief. Genevieve told them to go to the ER if symptoms worsened or he had difficulty breathing. The mom thanked us for the instant relief, and for saving the family a trip to the ER.

This stuff never happens, but this day EVERYTHING was happening. We were almost back to our beach house, when we saw a fisherman struggling to get his line out of the water. At first we thought he had a snag, but eventually we saw what he was reeling in: You guessed it. A turtle.

I offered to help. He reeled it in until I could grab the turtle and lift it by the shell. I held it while he ran back to get his pliers, and then pulled the hook out of the poor turtle's mouth. Once it was out, I let the turtle loose in the water, and he swam off at Olympic speed. He didn't even say thank you, probably because his mouth was too sore.

So I'm starting to think that this is why I'm still alive: To rescue turtles. But then Genevieve reminds me that we have been invited to be ambassadors.

Sounds impressive, doesn't it? Now you're wondering, "ambassador of what?"

I guess "Cancerland" would be the best answer. This is four-day speaker training program in Chicago, so that Genevieve and I can become more skilled at public speaking, and then speak at regional cancer-related events when the opportunity presents itself. Now THIS has our full attention. I can't think of anything more fulfilling than providing hope and inspiration for other people that are going through what we're going through.

Last, but number one on my mind for the past couple of weeks, I want to give you an update on my friend Craig Blower. Craig and I have been on parallel paths with Tarceva and then AZD9291 for the past almost three years, although Craig started AZD9291 a few months before me. He has had growth in his existing spots, and metastasis to some new ones. The treatment course is unclear at this time. He is asking for virtual hugs across the miles. If you are so inclined, visit https://craigblower.wordpress.com/ and say hello. It would mean a lot to him, and to me as well.

Love,

Dann

Is Cancer Too Profitable to be Cured?

If you have been diagnosed with cancer for any length of time, then no doubt friends or family members have forwarded information to you about miracle cures from alternative sources that the medical community doesn't want us to know about. Inevitably, the information includes a statement that the cure has been kept from the public because "cancer is too profitable to ever be cured. This question was responded to on a public forum by Dr. Jack West, who is medical director of the thoracic (lung) oncology program at Swedish Cancer Institute in Seattle. Here is his response:

"As someone who cares for sick cancer patients every day and sometimes at night as well, a demanding job that takes a significant emotional toll, I'll start by saying that although I know you are only one of many people who is cynical enough to think along these lines, the question is callous and betrays ignorance.

First, cancer is not one disease but many. In fact, many cancers are cured, and we have made great advances over the past several years and decades.   I have many patients alive now who would have died had it not been for the efforts by my colleagues and myself.

Second, people who suggest that there is a cure for cancer available or readily attainable but not pursued because it's more profitable to continue the status quo have absolutely no concept how difficult an opponent cancer truly is. Cancer is cancer because it grows faster and better than the other tissues of the body, and its job is to mutate over time. That means that cancer cells throughout the body are not the same because they have different mutations, making some resistant to a treatment that is effective against many other cancer cells.  Even if a treatment is effective against 99% of cancer cells, the remaining 1% of cells that are resistant can not only survive but grow and divide and repopulate to create a newer, more and more resistant cancer. This is exactly what happens in many cancers, which can have dozens and dozens of different mutations in a single cell.

Third, I find it puzzling why people who suggest a vast conspiracy to avoid curing cancer ignore the unfathomable financial windfall for the company or institution that actually cures it. If you could cure previously incurable cancers, a company/doctors could charge an unprecedented amount for the treatment, even if they didn't need ongoing treatment. I assure you doctors would rather cure cancer than watch patients they care for decline and die despite their great efforts.

This prevalent theory that cancer may be too profitable to cure is perpetuated by ignorance, like climate change denial.  Unfortunately, there are always people who will abjectly refuse to recognize reality and continue to perpetuate ignorance.  I hope that after asking the question and getting a cogent answer that you aren't one of them."

You can see more from Dr. Jack West at one of my favorite websites, http://cancergrace.org/.

Portland's First Annual Lung Love Run/Walk was a Success

Here's something that gives me a lot of hope: The Lung Cancer Alliance held their first annual Lung Love Run/Walk last Saturday in Portland. It turned out great. 500 people participated. That is great for the heart - and lungs! 

My own team, Live Lung and Prosper, had 11 participants, and many others who donated. Thanks to all of you for your part in this!

Most impressive to me was Kathleen, who was diagnosed eight months ago, and the amazing amount of support she brought with her. Team Big Kat had 100 participants! That's a whole lotta love in one place!

Of course, there are pictures:

                        Look at all these lung cancer survivors!

                                        Strong lungs!

Keep us in mind next year, and we'll make it an even bigger success!

An Open Letter to the Newly Diagnosed

Dear Friend,

There is so much I want you to know. Let’s get started:

1.       Have hope. Cancer treatment is exploding right now. It’s just incredible how fast things are changing – for the better.

2.       Finding out is the hardest part. The first days, or weeks, are overwhelming for everyone. You will get past this - we all do. Just remember that what you are going through right now is harder than everything else you will go through. Everything else combined. The reason? You don't have any tools to deal with it yet. That will change.

3.       Let people in. My life is much richer and more full of love now than it ever was. That only came from sharing my trials and vulnerabilities. I have no doubt that I am alive today because of the love of, and for, family and friends. Rarely people vanished because they couldn't cope with my cancer, and I can understand this. Much more often, people surprised me with their outpouring of caring and love. Take the risk. Still it's easier if you...

4.       Plan how you are going to share your diagnosis with others. I found that by emailing people I cared about before talking with them about it, it saved me from endlessly re-living those first moments after being diagnosed, after the cancer had grown, or spread, or didn’t shrink when I had high hopes. This gave friends and family time to compose themselves before they talked with me, and because of that, the conversations went much better. This way I could also set the tone that I hoped that they would reflect back to me. It works.

5.       Throw the statistics out the window. If you've been diagnosed for longer than 12 hours, you have probably already done an internet search and tried to calculate your survival odds and/or your new life expectancy. Finding statistics that match your specific situation is nearly impossible. For example, the average age of diagnosis for lung cancer is 71. I was 49. Do you think treatment outcomes will be the same? General health, environmental factors, location/size/number of tumors etc. – there are too many variables to make the stats make any sense for an individual.

6.       More importantly, whatever statistics you find are probably hopelessly out of date. New treatments are coming online too fast for the statistics to keep up.

7.       A diagnosis is not a prognosis. I was at the LUNGevity HOPE Summit a few weeks ago with 150 lung cancer survivors. Most of us attending have, or had, Stage IV lung cancer, and a dozen have been alive for at least five years. If that's not enough, I am your living example. I was first diagnosed nine years ago. The same diagnosis yields different results for different people.

8.       Do your homework. Your survival chances are directly related to the quality of the treatment providers you work with. Is your oncologist a specialist in your specific type of cancer? As a general rule, the more people that your doctor and your treatment center have treated that have the same type of cancer as yours, the higher their success rate. Experience makes a difference. Who are the recognized experts in your type of cancer that are within a radius that you are willing to travel?

9.       Get molecular testing. The most promising breakthroughs in cancer treatment are at the molecular level. This includes both targeted genetic treatments and immunotherapy. If your oncologist doesn't think you need it, consider the possibility that your oncologist is out of step with the latest research. You may want a second opinion.

10.   Re-think clinical trials. "Clinical trials" used to be considered the last gasp desperation approach to treatment. The reality is that, for lung cancer and many other types of cancer, this is where you will find the most promising, cutting-edge medicine, with the best results, and with the least side effects.

11.   Exercise, sleep, and diet all make a difference. They impact your mood and your ability to cope. More importantly, you will recover from medication, radiation, and surgery better and faster if you are in the best shape you can be. Take care of yourself. Exercise, sleep, and diet. In that order. One man's opinion.

12.   Attitude matters. Treasure the moment. Live in gratitude for what you have right now. Choose hope. These things not only improve your quality of life, they also improve your chances of living a longer life.

13.   Love yourself. Treat yourself like you matter. Because you do. This may be your last chance to act like it.

14.   Choose your own path. I’ve laid out the way I see it. You may see it differently. Find your own vision of the future, and own it.

If you are newly diagnosed, I wish you the very best in your journey. Contact me if you would like. If it has been some time since you were diagnosed, I welcome your comments.

Love,

Dann

LUNGevity HOPE Summit

I'm going to Washington!

Every year LUNGevity holds a HOPE Summit in Washington, D.C. This year it is on May 1st to May 3rd, and I'm going.

I learned about the conference last year, but didn't want to go. Just like Groucho Marx once said,  "I wouldn't belong to any club that will accept me as a member."

I thought that getting a couple of hundred people with lung cancer together in one place could lead to all kinds of negativity, despite the name of the conference. So I didn't go.

HOWEVER. Over the past year I have gotten a different view. I've looked at it with much more, well, hope after more contact with a number of bloggers, people in online open forums, and people who have commented on my blog. The view from here is looking pretty positive. Maybe it actually COULD be a Summit of Hope.

Craig https://craigblower.wordpress.com/ told me that LUNGevity was providing scholarships, including travel, accommodations in a fancy schmancy hotel, and a couple of meals a day to first-time conference attendees who simply apply. So I did, and, surprisingly, it was that easy. Free. No catches. 

If you're interested, go to http://lungevity.org/ and click on the Events tab. This is a great site for a lot of reasons, and this conference is just one of them. Look around while you're there.

I'm going to find out who actually pays for these scholarships. I have one more reason for gratitude, and I'd like to thank the benefactor.

Five Things You Didn't Know About Lung Cancer November 2, 2014

Friends and Family,

This is Lung Cancer Awareness Month! This is a topic near and dear to my heart. Within centimeters, if you really wanted to know.

Here are some facts that will surprise you:

1. Twice as many women die from lung cancer as from breast cancer. Who knew?

2. Lung cancer kills more people than breast cancer, prostate cancer, and colon cancer combined.

3. 160,000 Americans die of lung cancer every year. That’s the equivalent of a jumbo jet crashing every single day.

4. US research dollars spent per cancer death are 4X greater for colorectal cancer, 8.5X greater for prostate cancer, and 14X greater for breast cancer. WHY IS THIS?

5. Lung cancer in never smokers is the 6th leading cause of cancer deaths in the US.

If this matters to you, share it with someone you know. Awareness has incredible healing powers!

Love,

Dann

Lightning Strikes! September 5, 2014

Friends and Family,

WHAT A RUSH!

This morning my buddy Craig called to make sure I got critical news ASAP. He had contacted the clinical trial coordinator in San Diego for AZD9291 (dubbed “The A Team” by Craig), and found out that they will only be accepting new patients UNTIL NEXT FRIDAY. I have exactly one week to get into this trial, or miss the opportunity altogether.

Was it time to press the panic button? This was the only treatment option that we know of that sounded better than either chemo or staying on Tarceva and going downhill slowly (or faster, we don’t know). My time window was incredibly narrow. I also needed to have the right mutation (T790) of my mutation (EGFR), get all my clinical records down to San Diego from two different clinics and two different hospitals, have my oncologist call, get an appointment and be seen, and possibly have a new biopsy, all by next Friday. It felt like drawing a target in the middle of a football field and hoping that lightning would strike on the 50-yard line.

I felt the tension mounting this morning as I was scrambling to get this together. I called AND emailed the clinical trial coordinator (“Master of the Universe,”for my purposes), essentially telling her that I would do back flips, cartwheels, paint myself purple and turn myself into a Wookie if it would get me into The A Team clinical trial by next Friday. Next I called Dr. Cetnar's office to grease the wheels of bureaucracy by using the two-pronged frontal assault, from both doctor and patient. HOWEVER… wait for it… he is… ON VACATION starting today!

About this time my back was so tense that it felt like a coiled steel spring. If someone had snuck up behind me and said “boo,” I probably would have jumped right over my desk. I might have even left a trail behind me.

I finally got an email from the Master of the Universe (MOU), letting me know that ALL my clinical records, biopsies and scan results would be needed to consider me for the trial. And, by the way… wait for it… she is… ON VACATION starting at 5 PM today. No pressure here…

In the end, the pieces tumbled into place. MOU told me that since I already have the T790 mutation, I shouldn’t have to worry about being in the target group. Dr. Cetnar called MOU from home on his vacation. Both OHSU and the Oregon Clinic got past their internal glitches and computer failures and faxed their small mountains of records to MOU, and both film libraries told me that they would have CD’s burned with my scans on them by Monday. AT 5:30 PM today MOU emailed to tell me that my appointment will be on Tuesday.

MOU started her vacation right after hitting the “Send” button.

I’m in!

Absolutely everything had to line up for things to fall together for me. If I had my CT scan a week later, I would have missed this clinical trial. If I didn’t have a job that was flexible enough to accommodate the travel involved, I couldn’t make this work. If we weren’t fortunate enough to be able to afford repeated travel expenses, this wouldn’t be feasible. And of course, if I hadn’t heard about the trial from my buddy Craig, my oncologist wouldn’t have even known that the trial had started.

EVERYTHING above had to fall together in the right way. What are the odds?

Sometimes lightning DOES strike right where you need it.

Thank you to all of you for all of your positive energy, prayers and cheerleading. Some of you took that request literally! It was great! I have also shared your emails with Genevieve, and both of us have coped much better because of you. It was a semi-sleepless night for both us, made much better because of you.

Thank you for being my light, and my lightning.

Love,

Dann