NCI Features the ROS1ders on its CCG Blog

Today the National Cancer Institute published this blog about the ROS1ders on the Center for Cancer Genomics “Insights and Innovations” blog.  The Global ROS1 Initiative is underway!  I’m glad I was able to help share our story.
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ROS1+ Cancer Patients Partner to Increase Research

May 23, 2017, by Janet Freeman-Daily, MS, Eng

In May 2015, I met four friends in a bar near Washington, D.C., to talk about not dying of cancer.

This conversation planted a seed that has grown into The Global ROS1 Initiative, a patient-researcher partnership that is redefining research into ROS1-positive (ROS1+) cancer. The Initiative includes a group of over 150 patients in 19 countries; two patient-focused foundations, Bonnie J. Addario Lung Cancer Foundation (ALCF) and Addario Lung Cancer Medical Institute (ALCMI); academic cancer researchers; and industry. The Initiative includes more than twice the number of patients enrolled in any ROS1 clinical trial thus far.

How did this happen? Let’s return to the bar. Read More …

Guest Blog by Dann Wonser: Do I stay in my clinical trial?

My friend and fellow lung cancer patient Dann Wonser recently blogged an update about his treatment status.  In it, he shared how he made his decision about whether to stay in his targeted therapy clinical trial after the drug received FDA approval.  It’s a worthwhile discussion–an increasing number of cancer patients will face such decisions as more targeted therapies are approved–so I asked his permission to share it on my blog.  The entire text is listed below.

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NEW SCAN RESULTS + CLINICAL TRIAL DECISION

published December 17, 2015 by 

Friends and Family,

After our usual pre-scan hyper-sensitivity to every indigestion burp, cough, or body ache, I kicked my anxiety into overdrive by getting a cold/flu. It gave me all the symptoms of lung cancer gone rampant: Difficulty breathing, heavy chest, cough, feeling not so great. Then we flew to San Diego, where Dr. Patel gave us the good news: No new growth! We’re celebrating!!! We are now a couple of months past the average time that Tagrisso usually remains effective, which leaves me even more grateful. I have another six weeks of sweet life, and have bought another six weeks of time for the next new drugs to be developed before I need them. Clinical researchers out there, you are my heroes! Keep up the great work!

A couple weeks ago I asked what you would do if you had the choice of ending the clinical trial, but continuing to get the same medication in my home town. I thought I had probably covered the major topics pretty well, but found that there was much more to consider after listening to your thoughts. Thank you for contacting me through every means imaginable to share your thoughtful contributions! If you just want to know what I decided, skip straight to the bottom of this email. If all the facets of this decision fascinated you as much as they have me, keep reading and I’ll share what I learned from you.

First, Tagrisso is so new that the insurance company may not cover it, or may not have a contract with a pharmacy that carries it. They may also have a much higher co-pay for a new drug. This could critical, since the reported cost is $425 per pill. That’s right: $425 per day. I am very fortunate to have an insurance plan that has a maximum out-of-pocket expense. I usually meet that annual maximum out-of-pocket around January 7th, 🙂 and then I’m covered 100% for the year.

But what about those who do not have such great coverage? Fortunately, Astra Zeneca has a patient assistance program. See  http://www.astrazeneca-us.com/medicines/help-affording-your-medicines/ if you are in this boat. I believe other drug companies have similar programs… Worth checking out.

Several people told me they would get out of the clinical trial as soon as possible, to cut radiation exposure in half, by having half as many CT scans. Ashley, my clinical trial coordinator, petitioned the study sponsor to decrease the scan frequency for everyone. I’m impressed, and very grateful! Thank you, Ashley! Hey, I know it’s a long shot, but I appreciate the advocacy!

A friend and fellow blogger, Linnea Olson, actually contacted her study sponsor herself. Way to be your own advocate, Linnea!

But how much radiation is too much? Fortunately, I know someone who has spent years measuring radiation levels in workers at a nuclear-related facility. She can’t give an accurate response without knowing the radiation dose levels of the CT scans, but her best estimate is that the dose is still less than the daily level of radiation considered safe for workers in the nuclear industry. I don’t know whether that makes me feel relieved, or worried for the nuclear workers. All the same, it would be helpful to get dose info from a radiologist who does CT scans. I’ll work on it.

Several people mentioned the advantages of staying close to clinical researchers who are on the cutting edge of treatment. How could I replace that?

The length of the clinical trial was questioned. Dr. Patel has no idea how much longer the trial will continue. However, I have the choice of exiting the trial at any point.

Several of you mentioned the importance of contributing to research that affects the lives of so many. More data will help guide more research, and benefit more people.

The travel expense is not the biggest issue, but one that seemed reasonable for the drug company to cover at this point. The cost is roughly the equivalent to the price of one pill ($425) every six weeks.  UCSD told me that they never go back to the sponsor to ask for travel assistance. So…. I bypassed the system! I have my own Astra Zeneca connections, so I made my own request. We all have to be our own advocates.

I asked Genevieve how this impacts her, since she makes every trip with me. She dismissed the question as trivial and irrelevant. That says a lot about love, doesn’t it? She’s a keeper!

One friend, Joe, had a more noble take. He said that it’s good to stay with the girl that brought you to the dance, and make sure she gets home safe. In other words, since this clinical trial saved my life, perhaps loyalty should be a consideration.

Thank you  all for making me consider so much more, and in so much more depth. It makes me feel more comfortable with my decision… to stay with the clinical trial. You helped me crystalize that my biggest concern was the radiation, which I feel a little better about now. You also helped me to decide just how important it is to contribute to the research, and to realize that the most important factor for me is sticking close to Dr. Sandip Patel. He is the most cutting-edge oncologist that I know about for my situation, and I have direct access to him. That is irreplaceable.

Wishing you happy holidays, and decisions you can live with.

Love,

Dann

Guest blog: Dear lung cancer patient who didn’t smoke

In February of 2014, I wrote a blog post titled “Dear lung cancer patient who smoked.”  Today that post received a comment from my friend and fellow lung cancer patient advocate K ‘Karen’ Latzka.  Her insight deserves a blog post of its own.  Reposted with author’s permission.

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Dear lung cancer patient who didn’t smoke,

I was a pre-teen when my older sister invited me to smoke a cigarette with her. I worshiped her, and was excited she included me. Smoking united us. By sixteen, I had a full-blown addiction that I couldn’t break. But the day before my dad’s birthday, when I was 35 years old, I smoked my last cigarette.

For a decade, people celebrated this accomplishment with me. Relatives, friends and strangers asked me for tips to help them quit. More important, I forgave myself for poisoning my body for so long and committed to a healthy lifestyle.
At age 46, I was diagnosed with lung cancer. Since that day, every time someone hears of my diagnosis for the first time, they ask “Did you smoke?” and, unlike my never-smoker brothers and sisters, I respond yes. Yes, but I quit a decade ago. Yes, but I know lots of people with lung cancer who never smoked. Yes, but I don’t deserve to die!

I remind myself that the question usually is not intended to judge me, but rather the inquisitor is gauging their own risk. Smokers and ex-smokers usually follow-up with questions about my smoking history, perhaps hoping my history was worse than theirs. Never-smokers usually follow-up with questions about a loved-one’s smoking history, or about second-hand smoke. I patiently respond with the things I know, followed by “anyone with lungs can get lung cancer.” And in the end, many walk away still thinking that I deserve what I got, most without showing a bit of compassion. And I forgive myself once again, and tuck away the guilt and shame until the next round.

It’s exhausting. It’s hard enough to fight the guilt and shame we put ourselves through after diagnosis, but to be reminded of it again and again by strangers, while we’re literally fighting for our lives is something most of us don’t have the will or the strength to tolerate. Which is why, when I look at my ever-expanding list of lung cancer friends who are active advocates like me, I don’t see many who have a smoking history.

So you advocate for all of us. The rise in lung cancer among never-smokers has caused an explosion in lung cancer research (relatively speaking). We’re finally seeing this research extend the lives of lung cancer patients! And these patients are actively advocating for more research funding, better education, and better screening methods.

As for this former-smoker, I will continue to fight lung cancer stigma by your side, and to do everything in my power to improve survival outcomes, no matter how exhausting it is.

With much love,

A lung cancer patient who smoked

Tori Tomalia Is “Sharing Our Story” for Lung Cancer Survivors

Stage IV lung cancer blogger Tori Tomalia, a mother with young children, gave a great speech at a lung cancer event yesterday. She posted the speech on her blog, and gave me permission to repost the text below. Inspiring!

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Sharing Our Story

I almost titled this post “Sharing My Story,” but realized that this is much bigger than me. Today I had the honor of speaking at the Peter A. Kaylor Lung Cancer Walk in Allegan, Michigan. I know how lucky I am to be able to speak out about this disease, when so many others who have gone before me are no longer able to do so.This was what I had to say about my one year, four months, and five days (so far) of living with lung cancer.

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It started with a cough that wouldn’t go away. But everybody I knew had a cold, so it didn’t seem like a big deal. I started to feel a little better, but before long I had another chest cold. And I was exhausted, but I was in grad school full time, working, and raising a 4 year old and infant twins. Who wouldn’t be exhausted?!? But my breathing kept getting worse, so the doctor thought it was a return of my childhood asthma. We tried one medication, then another, then another. But I kept getting worse. Finally, in May of 2013 they sent me for a chest CT scan to see if there was something else going on. There was. The scan revealed a large mass in my left lung, that had wrapped all around and had caused my lung to partially collapse. A biopsy confirmed that it was lung cancer, and further testing showed that the cancer had spread to the other lung, my spine, my hip, my ribs, my shoulder blade, and my liver. I was unequivocally stage IV, inoperable, at age 37.

At that time, I thought it was impossible for a nonsmoker to get lung cancer. Clearly, I was very wrong.

So I began 4 months of chemotherapy. July, August, September, October, I struggled with side effects and tried to spend as much time with my family as humanly possible, to “make memories” as my social worker advised. I got to see my little girls learn to ride tricycles, and I got to see my son start kindergarten. The amazing thing was that as the summer progressed, my breathing started getting better. I was able to climb upstairs and kiss my son goodnight again. I was able to walk around carrying my little girls. And then the scans confirmed it: the chemo was working, and my cancer was shrinking. But as October rolled around, a question loomed: what next? The cancer was shrinking, but not gone, and a person can only tolerate so much chemo before the toxic side effects become too damaging. We discussed what they call “maintenance” chemo, a lower dose of chemo that they can give for as long as the patient can tolerate it, to try and keep the cancer at bay.

Meanwhile, the shock of having stage IV cancer was starting to wear off, and my thirst for knowledge had kicked back in. I started reading about personalized medicine, where they can test the tumor and figure out what went wrong to cause the cancer, called the cancer “driver.” My oncologist had tested me for two common ones, but my obsessive reading and research revealed that there are several other rare ones that can be tested for. I asked my oncologist for further testing and on October 31 – Halloween – I got the wonderful, game changing news that we had discovered what went wrong to cause my cancer, and that there is a drug to treat it. In November, I started on a brand new drug called Xalkori. I have been taking this medicine – two pills a day – for 11 months, and currently I have no evidence of active cancer anywhere in my body.

But I know the battle isn’t over. My wonder drug is amazing, and I am thankful for the good quality of life I have now. I still have side effects, but they are not as bad as chemo. However, I know that my cancer will eventually become resistant to this treatment, that my cancer will figure out a way around my super drug. If/when that time comes, I will pursue other treatments, plans B, C, D, and so on. I have stage IV cancer, I will always be in treatment.

To say that this past year has been life-changing is quite an understatement. I certainly appreciate things more than I used to, and I think I have gotten even bolder and more outspoken than I used to be, if that is possible. And I have connected with a whole lung cancer community full of incredibly strong and wonderful people, who I now consider my “lung cancer family.” Sadly, I have learned that this disease can strike absolutely anybody.

There’s Craig, diagnosed at age 60
Janet, diagnosed at age 55
Mark, age 47
Lisa, age 41
Molly, age 39
Samantha, age 33
Emily, age 28
Burton, age 23
and Corey, age 22

The thing we all have in common is that we were all diagnosed at stage IV. Stage IV. The other thing we all have in common? None of us deserved this.

Here are some sobering facts:

  • Lung cancer is the second leading cause of all deaths in the US.
  • Lung cancer kills almost 2x as many women as breast cancer and 3x as many men as prostate cancer.
  • Lung cancer in never smokers is 6th leading cause of US cancer deaths.

And yet, I chose to remain hopeful. I know that I am one of the lucky ones. Things are changing fast in cancer research. If I would have gotten this a few years earlier, I probably wouldn’t be here today. If I hadn’t pushed to get more testing done on my tumor, I might not be here today. Chalk it up to stubbornness, perseverance, or just dumb luck, I am very thankful to be here talking to you today.

I am alive because of research. There are some really exciting discoveries going on out there and some amazing things coming down the pike. My goal is to stick around long enough to see them.

Guest Post: Does Cancer Screening Cause “Overdiagnosis”?

The guest post below is written in response to Dr. Scot Aberegg’s blog post.  His and other recent blog posts and articles have claimed “overdiagnosis” of breast cancer and lung cancer due to screening.  Andrea Borondy Kitts, a former engineer and fellow Lung Cancer Social Media tweeter whose husband died of lung cancer last year, addresses Dr. Aberegg’s claims in her letter.

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Dr. Aberegg, thank you for your interesting post on overdiagnosis problems with breast and lung cancer screening. I would like to comment on many of your points.

Background:

I am a mechanical engineer.  I have a Master’s degree in Management and retired after a 32 year career in aerospace, 10 years as an executive. I am back in school getting a 2nd Masters degree, this time in Public Health. I advocate for lung cancer as a volunteer for the American Lung Association, for the National Lung Cancer Partnership, on twitter as @findlungcancer, and for several Hartford CT area hospitals with their lung cancer screening programs. I lost my husband, Dan, to lung cancer on April 12th, 2013 after an 18 month hard fought battle. Dan had all the risk factors for lung cancer. He was 69 years old at the time of his diagnosis, he had quit smoking 11 years prior to his diagnosis, he had an 80 pack year smoking history, his sister had died of lung cancer at age 62 and Dan had COPD. Unfortunately, at the time of his diagnosis, lung cancer screening was not recommended.

Comments on the BMJ paper about the Canadian National Breast Screening Trial:

We had a 3 hour discussion in my UConn Chronic Disease Control class last week about the recent British Medical Journal (BMJ) paper on the 25 year follow up to the Canadian National Breast Screening Study. In attendance were 2 cancer epidemiologists, one a breast cancer expert, and an oncologist with breast cancer expertise.  In conclusion, the consensus among the experts was the study did not provide enough credible evidence to change the recommendation for breast cancer screening in the US.

Key concerns raised with this study:

  • In the mammography group 2/3 of the breast cancers found were palpable. This is not consistent with clinical breast screening experience where most breast cancers found with mammography are too small to feel.
  • Screening was only for 5 years. Most breast cancers are slow growing so may not have screened long enough to capture the difference in mortality. The risk for breast cancer increases with age, so each passing year after the screening stopped the women had a higher risk of getting breast cancer. The number of breast cancers found in the mammography and non mammography arms were the same after the 5 year screening period was stopped.
  • Although mortality did not differ between the 2 groups, the cancers found in the mammography group were smaller and less were lymph node positive.
  • The study is predicated on universal access to adjuvant therapy. Canada has a National Health System so all women have access to care. This is not the case in the US.

Other discussion points:

  • There are 22 million women in the US between the ages of 40 – 49. Not screening this population would save a lot of money.
  • Need to have better genetic markers for who will develop breast cancer to risk stratify the population to screen

My “take-aways” from the discussion

  • Large screening clinical trials/studies are hard to do right especially with decades of follow-up; often new technology and new treatments can overtake results
  • Policy can be influenced by strong advocacy sometimes resulting in non-evidence based recommendations
  • Even the experts don’t fully understand the results and don’t know how to apply to population recommendations

Comments on lung cancer screening:

The most important point to consider when comparing lung cancer screening to Mammography or PSA screening is that lung cancer screening is different.  Screening is limited to the high risk population and the gold standard randomized trial, the National Lung Screening Trial (NLST), showed a 20% mortality reduction with LDCT screening versus chest x-ray.

I don’t understand the derivation of your NNS of 950. The original paper published in the NEJM calculates the NNS as 320 for the NLST study population.

One of your discussion points focused on all-cause mortality being biased lower in the LDCT group, not because of incidental findings, but because of changed behavior in the LDCT group with false positives; for example smoking cessation. I do not think this biases the results. The results are a real, albeit, an unintended benefit for LDCT screening. The public health and medical communities have been continuously searching for ways to influence people to adopt healthy behaviors.  It’s wonderful, if in fact, LDCT screening provides a “teachable moment” resulting in healthier behaviors and improved outcomes.

Your discussion about telling folks to quit smoking as a better alternative to lung cancer screening is flawed in that, more than 50% of lung cancer diagnoses are in former smokers. These are people who have already quit smoking. Their only hope for improved survival is for secondary prevention in the form of early diagnosis with LDCT screening.

Your discussion about older people not being screened due to overdiagnosis because of mortality due to other causes is disturbing. You seem to be advocating that when people reach a certain age, we should give up on any type of screening because they will probably die soon anyway. I was particularly shocked with your statement “What if, in essence, we save a lot of people from lung cancer who then die from a heart attack 6 months later?” This would imply we should not treat any disease with a 6 month or less prognosis; let’s just save the money, 6 months is not worth the expense to society. WOW. You criticize the USPSTF final recommendation to screen to age 80 as too old. However, you neglect to mention the USPSTF modifier that “screening should be discontinued once a person has not smoked for 15 years or develops a health problem that substantially limits life expectancy or the ability or willingness to have curative lung surgery”.

And finally you discuss how a physician patient discussion on lung cancer screening might go. I would like to add a few more scenarios to your hypothetical discussion.

  • There is now a recommended screening test for lung cancer for a high risk population. I think you might be in the recommended to screen group. I wanted to review your risk factors with you and discuss if screening might be right for you.
  • It’s great that you stopped smoking 11 years ago. However, your risk level is still elevated. Your heavy 80 pack year smoking history puts you at increased risk. We know there is a strong dose response relationship with smoking and lung cancer. In addition, knowing that your sister died at age 62 from lung cancer, puts you at increased risk as well. You also have COPD another known risk factor.  I have a risk calculator I use to help me stratify risk for my patients. http://www.brocku.ca/lung-cancer-risk-calculator
  •  There is a 25% chance you will have a finding from your screening. 95% of the time it will not be lung cancer. Most of the time, the follow up to the finding is another LDCT. There is a small possibility you would have a more invasive procedure. However, the benefit of finding lung cancer at an early stage is improved survival. At stage 1a there is an 85% chance you will be alive after 5 years. At stage 4 that is less than 10%.
  • Based on your risk profile, I think you should consider LDCT lung cancer screening.

The point is that each patient is unique and the discussion with the patient should be tailored to the risk profile for the patient. The discussion you portray would not be appropriate for my hypothetical patient, who yes, happens to fit the profile of my husband who died in April 2013 from lung cancer.

Lung cancer is the leading cause of cancer deaths in men and women in the US and worldwide. It is the second leading cause of all deaths in the US after cardiovascular disease. More people die of lung cancer than breast, colon, and prostate cancer combined. Five year survival at 16% is essentially unchanged since 1975. We finally have a screening test for lung cancer and if everybody would stop trying to discredit the test and just get out of the way we will save lives!