Hi CancerGrace Members,

Grace has been asked to pass along this invitation by Tulane University's Psycho-Oncology Research Program whose Mission Statement reads, "The mission of the Psycho-Oncology Research Program is to improve quality of life by anticipating, preventing, and alleviating the emotional and physical burden of cancer."

Historically there has been much too little investigation into these matters and we are happy to see such research programs moving forward.

Wishing all of you a safe week,

Janine

Our research team at Tulane University is conducting an online survey of individuals with cancer.

(http://tulane.co1.qualtrics.com/jfe/form/SV_2f1b8MH3hkzkvDT)

The study takes about 30 minutes and involves receiving personalized feedback about results on a personality test. Additional survey questions will ask about demographics, health history, mood, and feelings about cancer care. We hope that the study will build knowledge that can help individuals with cancer to be more satisfied with their care.

We would be happy to answer any questions you may have (Principal Investigator: Laura Perry, MS, Doctoral Candidate, lperry5@tulane.edu; Faculty Mentor: Michael Hoerger, PhD, MSCR, mhoerger@tulane.edu, (504) 314-7545). As well, we would be happy to send documents verifying ethical approval from the Tulane University Institutional Review Board (IRB) and a copy of the survey.

Thank you,

The Targeted Therapies Patient Forum from CancerGrace.org is finally here and FREE to anyone.  Originally scheduled for earlier this year our forum is now going to be held live online this Saturday, September 12, 2020.  

There’s no better way to get the most up to date information about research and real-life clinical practices than joining a group of professionals, patients, and caregivers for a day of lectures, panel discussions, and question and answer sessions.  

You’ve heard the saying 2 heads are better than one?  That goes doubly when you get a group of lung cancer specialists and researchers together.  I’ve been a member of Grace for over 10 years and have learned so many invaluable lessons from these types of group discussions.  This includes a variety of perspectives and detail only group discussions provide.  You’ll have ample opportunity to ask questions.  If you don’t already know, I think you’ll be heartened to see the genuine excitement from our faculty about new treatments and educating us so we can be players in the decision-making process. 

If you or someone you care about has NSCLC with a targetable mutation you won’t want to miss this forum.  

Here is the Agenda for Saturday, Faculty information, and Register here...See you there!  

The Targeted Therapies Patient Forum from CancerGrace.org is finally here and FREE to anyone.  Originally scheduled for earlier this year our forum is now going to be held live online this Saturday, September 12, 2020.  

There’s no better way to get the most up to date information about research and real-life clinical practices than joining a group of professionals, patients, and caregivers for a day of lectures, panel discussions, and question and answer sessions.  

You’ve heard the saying 2 heads are better than one?  That goes doubly when you get a group of lung cancer specialists and researchers together.  I’ve been a member of Grace for over 10 years and have learned so many invaluable lessons from these types of group discussions.  This includes a variety of perspectives and detail only group discussions provide.  You’ll have ample opportunity to ask questions.  If you don’t already know, I think you’ll be heartened to see the genuine excitement from our faculty about new treatments and educating us so we can be players in the decision-making process. 

If you or someone you care about has NSCLC with a targetable mutation you won’t want to miss this forum.  

Here is the Agenda for Saturday, Faculty information, and Register here...See you there!  

The Targeted Therapies Patient Forum from CancerGrace.org is finally here and FREE to anyone.  Originally scheduled for earlier this year our forum is now going to be held live online this Saturday, September 12, 2020.  

There’s no better way to get the most up to date information about research and real-life clinical practices than joining a group of professionals, patients, and caregivers for a day of lectures, panel discussions, and question and answer sessions.  

You’ve heard the saying 2 heads are better than one?  That goes doubly when you get a group of lung cancer specialists and researchers together.  I’ve been a member of Grace for over 10 years and have learned so many invaluable lessons from these types of group discussions.  This includes a variety of perspectives and detail only group discussions provide.  You’ll have ample opportunity to ask questions.  If you don’t already know, I think you’ll be heartened to see the genuine excitement from our faculty about new treatments and educating us so we can be players in the decision-making process. 

If you or someone you care about has NSCLC with a targetable mutation you won’t want to miss this forum.  

Here is the Agenda for Saturday, Faculty information, and Register here...See you there!  

Who couldn't use good news?  From the New England Journal of Medicine,

"Conclusions

Selpercatinib had durable efficacy, including intracranial activity, with mainly low-grade toxic effects in patients with RET fusion–positive NSCLC who had previously received platinum-based chemotherapy and those who were previously untreated. (Funded by Loxo Oncology and others; LIBRETTO-001 ClinicalTrials.gov number, NCT03157128. opens in new tab.)"

We're always proud of our faculty and humbled that they give valuable time educating the general public because they believe we are important in the decision-making process.  The study authors include Grace faculty, Dr. Jared Weiss, Dr. Melissa Johnson, Dr. Nathan Pennell and Dr. Karen Reckamp; as well as several others who have contributed to our library of articles and videos.

Janine

Over the past several years, one of the most active fields of research in the treatment of advanced lung cancer has been that of Targeted Therapies. Each year we see the discovery of new genetic targets and the development of new medications to target them. It's a rapidly changing landscape and GRACE is offering an opportunity to become current with the latest research and practice at our Targeted Therapies Patient Forum. GRACE has assembled a knowledgeable faculty of experts who will discuss a variety of breaking topics. You can read about the forum here

I've attended a previous forum, and the opportunity to learn from and interact with our expert faculty is priceless. 

The event will be held on April 6, 2019 in Philadelphia, PA and can also be seen on Facebook Live. It's a free event, but space is limited so register now here.

Hope to see you there!

Jim C Forum Moderator

Ketki Patel, a Patient Financial Advocate in Seattle recently offered suggestions and helpful information for financial navigation during your cancer journey.  If you haven't read the article, I highly recommend it!  It is full of great information.  You can read it here: https://cancergrace.org/post/how-combat-financial-toxicity-during-your-cancer-treatment.  

If you have questions for Ketki, please join this conversation!  Keep in mind that this is a public forum and others can read your info.  Please don't post personal information.  If you would like to contact her privately, please use the Personal Messaging option through our GRACE forums (click 'send author a message' below), her username is: ketki.  

Can you share with our community knowledge you have gained through your diagnosis and treatment?  What do you think about the information Ketki has shared?  We want to hear from you!  

On Saturday, November 10, 2018, GRACE partnered with Swedish Cancer Institute to present a live and webcast discussion on Local Therapies for Metastatic Lung Cancer. We are pleased to be able to share with you the videos from the live webcast, available now.  View the videos here! 

Drs. Jack West, Vivek Mehta, Puneeth Iyengar, and Eric Vallieres discussed the following topics: 

~Newer Technologies in Radiation

~Novel Indications for Local Therapy in Advanced NSCLC

~The Growing Potential Utility of Surgery in Advanced NSCLC

~Systemic Therapies for Advanced NSCLC

~Panel Discussion and Q&A

We invite your questions and comments - feel free to post here in our community forum! 

Hi All - 

I was approached by a WhatNext Group partnered with Rare Patient Voice, with the opportunity to participate in a study specifically for Non-Small Cell Lung Cancer patients and caregivers.  I am neither at this time (though I was in the past), and so declined their offer.  I did, however, tell them I would pass on the information to our community through the forums.  If you are interested in participating, please sign up with WhatNext (www.whatnext.com), or email Ingrid Kaugars at ingrid@whatnext.com.   The study, if it is a fit for you, offers $125.00 for what they say is a 75-minute process.  You must contact them for an individual unique link.  :) 

Below are some of the details, to help you decide if you want to participate.  

Thanks for being a member of WhatNext, partnered with Rare Patient Voice. We have an opportunity for you to take part in a Cancer study. It is for Non-Small Cell Lung Cancer. Our project number is ZS_2592.

Study Details:

• Looking for Non-Small Cell Lung Cancer patients and caregivers
• Webcam interview
• 75 minutes
• $125 reward

Things to Note:

• Patient and/or caregiver study
• Unique links, please do not pass along for 2^nd use
• Want to share this opportunity? Let us know and we can provide a new link
• Please use a laptop/computer ONLY. No smartphones or tablets - Preliminary questions are Mobile Friendly!
• Save this email to reference if you have any questions about the study!

 

Just sharing, I think avenues to get the patients heard are excellent - so if this is any help, I am happy to share it.