Nominate a CURE #LungCancer Hero by June 30, 2021

Show your appreciation for an individual who goes above and beyond to make a difference in the lives of those affected by lung cancer. If you know a hero who has inspired change, exemplified compassion or brought newfound hope to you or someone you care for, share their story by submitting an essay nomination for the 2021 Lung Cancer Heroes® awards. This is only the second year this award has been offered.

Submit your nomination by June 30, 2021 here: https://event.curetoday.com/event/d49340bf-0224-4cb0-974c-9ad4633de436/

Have expensive cancer meds that you can no longer use?

Many of my friends who have lung cancer take targeted therapy pills. Mine costs $17K per month when not covered by insurance. Some drugs cost even more.

Unfortunately, most all patients who take targeted therapy pills see their cancer eventually start to grow again. These patients often must change to a different anti-cancer therapy. When a patient has to change therapies, they may be left with unused medications.

Patients on expensive medications HATE to throw out their cancer drugs when those same drugs might help someone else live longer or more comfortably.

Some US states will allow “prescription reuse” — unopened cancer drugs can be donated for use by a different patient. As the map shows, state laws on this subject vary significantly, and not all states that have enacted prescription reuse laws have operational programs that enable reuse.

Why isn’t this easier? Why can’t I just drop off my unused pills at a pharmacy and know they’ll get to someone who really needs them but can’t afford them?

If you wish to donate unneeded cancer drugs, check with a local pharmacy or prescriber for practical advice on what may work in your situation, in your state. If your state has no operating program, contact your state legislators.

What a great opportunity for patient advocacy to make a difference!

GRASP registration now open to #lungcancer patient advocates for #ASCO21 poster sessions

Hey Lung Cancer Advocates!

Are interested in discussing an ASCO poster with a lung cancer scientist?

The IASLC STARS program, KRAS Kickers, and LUNGevity have partnered with GRASP (Guiding Researchers and Advocates to Scientific Partnerships) to offer lung cancer poster reviews at ASCO 2021. GRASP is a grass-roots advocacy effort that started in the breast cancer community. 

In the GRASP format, a scientist discusses posters with a small group of patient advocates and an experienced research advocate. Virtual GRASP sessions will take place the week after the official ASCO meeting with six different sessions over the course of two days.

To take advantage of this opportunity for the 2021 ASCO Annual Meeting, please join GRASP (it’s free!) and then go to GRASP advocate registration to register one of the five lung cancer poster sessions on selected topics.  Please also consider signing up for one of the optional GRASP training sessions (May 26 and 27).

If you have any questions, please contact Julia Maues julia@graspcancer.org, patient advocate and cofounder of GRASP.

We look forward to seeing you at a poster session!

Image credits:  © GRASP 2021

10 years with lung cancer. Grateful for the ride.

Exactly 10 years ago today, I was diagnosed with lung cancer.

It’s been a wild ride thus far. When I was diagnosed in 2011, the majority of lung cancer patients died within a year of diagnosis. I was considered curable, so I had chemotherapy combined with radiation. My cancer grew immediately when I stopped treatment. I had more chemo, followed by more radiation, but again my cancer grew immediately after I stopped treatment. You can read more details about my cancer ups and downs elsewhere on this blog, so I’ll keep the history brief. The upside is that I learned about clinical trials and biomarker testing from patients in online lung cancer communities, got my tissue tested for biomarkers, and joined a clinical trial for ROS1+ cancer.

I’ve been on the same oral cancer treatment (a targeted therapy pill) for over eight years with no sign of cancer on my scans.

I’ve run the gamut of emotions over those 10 years. Some days I felt horrible physically and/or emotionally. A very few moments, I felt hopeless.

Today, however, the predominant feeling is gratitude. Gratitude for the healthcare providers who took care of me. Gratitude for more time for life with family and friends. Gratitude that I was able to watch my son mature and build an independent life. Gratitude that I was diagnosed during a revolution in lung cancer research that generated new treatments, measurably increased lung cancer survival, and gave me a relatively normal life despite metastatic lung cancer. Gratitude for the growing community of lung cancer patients and advocates, and the deep friendships formed therein. Gratitude that I’ve found a new calling as a cancer research advocate.

Especially, I feel gratitude that I have been able to make a difference in the lives of other patients in those 10 years. My current focus is on supporting two programs I cofounded: the IASLC STARS program (which helps lung cancer patient advocates evolve into research advocates), and The ROS1ders (a nonprofit that aims to improve outcomes for ROS1+ cancer patients like me).

If you want to help me celebrate surviving 10 years, please consider donating to The ROS1ders. You’ll be helping me in my research advocacy work, as well as helping find better treatments and care for my cancer. I truly appreciate any support you can give. Just click here: Janet’s fundraiser for The ROS1ders

Exactly 10 years ago today, I was diagnosed with lung cancer. Today I’m going to walk in the sun and revel in the life blooming all around me. My lease on life is renewed yet again. I’ll hold on and ride it as long as it lasts.

Image credits:
Rollercoaster: © Helioshammer | Dreamstime.comRoller Coaster Photo
Scrabble image: public domain
Flowers: Janet Freeman-Daily

#LCSM Chat Topic 6-May-2021: “The Hows and Whys of Cancer Research Advocacy”

Please join #LCSM Chat and other Twitter cancer hashtag communities as we discuss “The Hows and Whys of Cancer Research Advocacy” on Twitter Thursday, May 6th, at 5 pm Pacific (8 pm Eastern). Join us to learn how cancer research advocates bring value to research!

More info about the chat (including the five discussion topics) on the LCSM Chat website: https://lcsmchat.com/2021/05/02/the-hows-and-whys-of-cancer-research-advocacy/

Learn how to participate in #LCSM Chat here: https://lcsmchat.com/lcsm-chat/

Remember, the IASLC STARS Program is accepting applications for 2021 Patient Research Advocates through May 10! STARS aims to help lung cancer patient advocates evolve into research advocates. https://www.iaslc.org/patient-advocacy/stars

8-Apr-2021 STAT Video Chat Event: What gene targeted therapies mean for patients with cancer

I’m excited to participate in the STAT News video chat “What gene targeted therapies mean for patients with cancer” on April 8, 2021 at 1:00 p.m. ET (10:00 a.m. PT) on the topic The discussion will include a great group of speakers:

  • Bonnie J. Addario, lung cancer survivor; co-founder and board chair, GO2 Foundation for Lung Cancer
  • Narjust Duma, M.D., assistant professor of medicine, thoracic oncology, University of Wisconsin Carbone Cancer Center
  • Janet Freeman-Daily, MS, Eng, co-founder and board chair, The ROS1ders; stage IV lung cancer survivor & research advocate
  • Laura A. Petrillo, M.D., palliative care physician, Massachusetts General Hospital and Harvard Medical School
  • Camille Hertzka, VP, head of oncology U.S. medical, AstraZeneca (sponsor speaker)
  • Eric Boodman, general assignment reporter, STAT (moderator)

You can register for FREE at this website to view the event live:
https://marketing.statnews.com/what-gene-targeted-therapies-mean-for-patients-with-cancer

8-Apr-2021 COSMO Panel–“Patient Engagement in Social Media: When the Doctor is No Longer the Expert”

I am honored to be a presenter at the Collaboration for Outcomes using Social Media in Oncology (COSMO) online conference tomorrow, April 8.

I’m speaking in Session IV (Social Media in Oncology: A Multistakeholder Look) on a panel titled: “Patient Engagement in Social Media: When the Doctor is No Longer the Expert” at 1:40–2:20 pm Eastern Time. Registration for the two-day conference is FREE. Register here: https://lnkd.in/duYxM7e

My fellow panelists are all awesome:

Chair: Patricia F. Anderson, MILS @pfanderson
https://www.facebook.com/pfanderson

Tamika Felder @tamikafelder
https://www.facebook.com/tamikafeldercampbell

John Novack, MS @J2Novack
https://www.facebook.com/john.novack.98

Dorinda (Dee) Sparacio, MS @womenofteal
https://www.facebook.com/dsparacio

Thanks to Don S Dizon for the invite to participate!@drdonsdizon

FDA Listening Session on Molecular Subsets of NSCLC — 21-Jan-2021

The US FDA is hosting a listening session to gather patient perspectives on oncogene-driven lung cancer. Representatives from several biomarker patient groups will speak; I will be speaking on behalf of The ROS1ders. Representatives from the FDA will share ways they are addressing the concerns raised by the patients.

When: Thursday, January 21, 2:30 pm to 4 pm ET.

Where: To receive a link to the event, register free at https://fdaoce.formstack.com/forms/nsclclisteningsession

If you’re unable to attend, you can watch the recording later.

CLCC statement regarding COVID-19 vaccinations for cancer patients

See the source image

The COVID-Lung Cancer Consortium (CLCC) is a global forum comprised of experts in thoracic oncology, virology, immunology, and vaccines, in addition to representatives of patient advocacy, government, and professional organizations. They meet every other week to address issues and explore research at the intersection of COVID-19 and lung cancer.

CLCC has drafted a statement about the importance of prioritizing cancer patients for vaccination against COVID-19. Its language has been enthusiastically endorsed by leading clinicans and scientists. We hope it will encourage vaccine prioritization of patients with cancer–especially patients with lung cancer–so that vaccine doses will be made available for them should they CHOOSE to be vaccinated (after discussing risks and benefits for their individual case with their healthcare provider).

ASCO is also working to ensure that cancer patients receive priority designation in vaccine distribution plans.

CLCC Statement Regarding COVID-19 Vaccinations for Cancer Patients

Individuals with several clinical features and co-morbid conditions, including cancer, are at increased risk of severe COVID-19 disease. Of particular concern, patients with lung cancer have increased mortality rates of ~32% from COVID-19 infection, which calls for specific prevention measures. Currently, individual states have varying plans regarding prioritization of these high-risk patient populations for vaccination, with some states recommending cancer patients be vaccinated early while other states place these patients farther down the priority list. The COVID- Lung Cancer Consortium (CLCC) meets on a regular basis to monitor ongoing impacts of the pandemic on patients with lung cancer and is comprised of a global assembly of thought leaders in thoracic oncology, virology, immunology, vaccines and patient advocacy. CLCC recommends that state-level policies for vaccine administration should strongly consider a high priority for vaccination of all cancer patients and especially lung cancer patients. Thus, as more vaccine doses are made available, these patients will have early access should they choose to be vaccinated after discussion with their healthcare providers of the associated risks and benefits. Clearly, we still do not yet have enough information about the effectiveness and any additional side effects of such vaccines in cancer patients depending on their cancer type, stage, treatments, and other medical conditions. As such key information becomes available, like that from current NCI sponsored research, adjusted recommendations based on scientific knowledge can be made. Currently, the CLCC recommends specific attention to this vulnerable population(s) and close follow-up of these individuals to ensure the vaccine is effective and there are no unexpected adverse events.

Patient participation in #NACLC20 virtual lung cancer conference

The virtual 2020 IASLC North American Conference on Lung Cancer (NACLC 2020) runs October 16-17. Patients will be providing special perspectives throughout the conference.

REGISTRATION IS FREE for all patients and caregivers. Register here: https://naclc2020.iaslc.org/registration/

Check out the full program here. https://naclc2020.iaslc.org/program-at-a-glance/

Don’t miss these two presentations by lung cancer patient research advocates on Saturday, October 17th:

Ivy Horowitz Elkins and Janet Freeman-Daily on “Patient Driven Research” in the Targeted Therapy session (9:50-10:45 am CT)

Jill Libles Feldman on “Adjuvant Treatment: What Does It Mean for Patients” in the Keynote session. (11:50 am -12:40 pm CT)