This article, The Side Effect Roulette of Cancer Treatment discusses the benefits of frank talk with your care team about side effects.  Many people don't realize their oncology team can mitigate many side effects and symptoms.  We've come a long way from the days when cancer treatment didn't include pain management let alone side effect symptom managment.

We have a long way to go and social media is stoking the fire by sharing info with others new to the game, "Meanwhile, patients continue to crowdsource from others on social media, to supplement information from their clinicians and drug materials, Wall said. Cancer survivors also can offer reassurance to others, reminding them that everyone’s experience with side effects may be different and not to assume the worst, she said.  “That is a major point of those forums existing to my mind,” she said. “We help each other with that information. People come in and say, “I was newly diagnosed. They want to give me this. Is anybody on it? What can you tell me about it?’’”"

Take care all,

Janine

I found this article, Patient Perspective: Patients With EGFR+ NSCLC May Still Opt for Quality Over Quantity After FLAURA2 on Tagrisso (osimertinib) Patients & Caregivers Group. It's written by Ivy Elkins.  She's cofounder of the patient advocacy group The EGFR Resisters and a member of the ILCN Editorial Group. All 3 of these groups are excellent resources for cancer education...As is GRACE, of course :). 

I've learned from oncologists mostly through GRACE how important individual choice, balance of quality and quantity of life, communication between onc and patient, and education and advocacy are.  Here is a person living with cancer and raising a family who has written this important commentary about the FLAURA2 trial. 

  Reminder...Videos from our live blood cancer onctalk forum, agenda, and accompanying slides are available here.

This link includes link to YouTube video of entire forum and a link to registration which also has link to agenda so you can find specific info without going through the whole video. 

OncTalk 2023 was a big success and is available here.  Soon the video will be broken down into small bites of specific info,  Until then you can find the agenda and faculty bios here.

Take care,

Janine

GRACE is passing this info along.

My name is Alex Sylvester and I am a producer with Itchy Rodent Films, LLC. I am reaching out on behalf of our independent documentary film “Spoke” about fire captain Rudy Pospisil.  In the span of twenty years, Rudy battles cancer successfully three times and goes riding his bicycle around the world to raise awareness for the disease. On his journey, he meets and befriends many cancer patients.

The reason I am reaching out is to invite a few patients to come join for filming. We believe the presence of someone currently in the middle of their healing journey, someone who meets and interacts with Rudy would make for a beautiful and inspiring moment in the film. “Spoke” aims to bring people together through powerful storytelling, to raise awareness and grow the cancer support community stronger.

We understand and respect that this is a very sensitive matter. We will do everything possible to create a comfortable environment that is safe for anyone who agrees to join us in telling this heartfelt and inspirational story. 

Specifics 

• Filming one day October 5th, 6th or 7th (exact date TBD on availability) 

• 5 volunteer patients who are comfortable being on camera. Ideally, we’d like to invite people who are currently or recently have undergone chemotherapy. 

• Two women and two men (age can vary) and a child. 

• This is a non-speaking role. It will require the volunteers to listen to Rudy read some letters from cancer patients; share a heartfelt moment; and share the space of healing together in the presence of Rudy. We will go to extra lengths to take into account the volunteer’s physical state of being and to make them comfortable.

• Compensation - $100 per volunteer patient.

SPOKE the incredible journey of fire Captain Rudy

This independent documentary film is produced by Itchy Rodent Films. Director is Bogdan Darev and the crew and supporting cast consist of local film professionals working in the film industry.

SYNOPSIS

"Spoke" is the real story of firefighter Rudy Pospisil who gets occupational prostate cancer in 2001. Rudy is married with three young children when he is told by an oncologist to "get his affairs in order”. After surgery and treatment, during time off from work, Rudy goes around the world on his bicycle to raise money and awareness for cancer. He raises 50K which is donated for cancer research on four different continents. 

Rudy cycles through the US, Western Europe, Thailand, New Zealand and Australia. He sets two world records. Prostate cancer comes back in 2016. In 2019 he battles lung cancer. Today he is free of cancer.

Rudy’s incredible journey serves to show people a cancer diagnosis is not the end to living a rich and inspired life.

Thank you for your time and consideration of our documentary film.

If you can get back to us as soon as possible we would greatly appreciate it.

Sincerely,

Alex Sylvester 

Producer @ Itchy Rodent Films

alexanderjsylvester@gmail.com

Join us now at https://us02web.zoom.us/s/82170808361

the Q&A begins 11:25 ET!

El Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón será presentado por destacados oncólogos torácicos de nivel mundial y profesionales en tratamientos dirigidos del cáncer de pulmón. Este es un evento gratis y en línea, puedes reservar tu lugar dando click aquí o en el link de nuestro perfil: https://cancergrace.org/spanish-targeted-therapies-lung-cancer-2023-agenda

Welcome to the NEW GRACE Caregiver Forum! We know that caregivers often find great strength in community, and so we've created a space in our Online Forum just for you. Our amazing Community Outreach Team, Jim and Janine, will be happy to join in your discussions!

Good morning :)

I want to share our newest Case Based Panel Discussions videos covering Stage I-IV) with the forum.  Most of you probably know that oncologists see each case as an individual disease.  That's because most all cases have at least one unusual component that can/should be considered when planning.  It's where the idea of "the art of oncology" comes into play.  When we read statistics it's important to look at the whole spectrum of individuals' outcomes.  My husband and my favorite example is he was restaged or recurred after curative chemo/rads which was either a mistake or spine radiation got rid of that last bit of cancer or... The point is he took a treatment break 11 years ago and never progressed (remember, inflamed scar tissue looks the same as cancer on CTs and PETs).  That's just the tip of the iceberg of rare and unusual aspects of his journey.  When you're a part of individualized planning a trip that interrupts treatment would be discussed and maybe even considered an important aspect of care.

This is where the case based discussions come in handy to us lay people.  Here they discuss how they look at an individual and all their differences to create an individualized plan. If you're reading this you've probably also consumed lot's of articles and videos that give outcomes/stats, that perfect number that falls in the middle of a wide range of numbers (people) half on either side. That works well when considering the entire population of that group but consider the individual that you are and don't expect to fall on that median number, sometimes no one does. 

I hope you have a good day or good moments in your day, ;)

Janine

If you've been diagnosed with nsclc then biomarker testing is a subject about which you should know. The links below come from our 2022 targeted therapies forum.

Advantages of next generation sequencing in nsclc

Liquid biopsies in nscl

Biomarker testing for nsclc: The importance and the disparities

Who should receive next generation sequencing (NGS)?