#LCSM Chat Preview 6/5: “Volunteer Opportunities with Lung Cancer Nonprofits”

Please join #LCSM Chat on Twitter June 5 at 8 PM Eastern (5 PM Pacific) to learn how you can help fight lung cancer by volunteering with lung cancer nonprofits. The chat will be moderated by lung cancer patient advocate Janet Freeman-Daily.

Lung cancer nonprofits offer volunteers many opportunities to help increase lung cancer awareness, federal funding, patient support and research. In the June 5 chat, some lung cancer organizations will tell us about their volunteer opportunities and field questions. Representatives of the following organizations plan to participate (in alphabetical order):

Bonnie J Addario Lung Cancer Foundation
Dusty Joy Foundation
Free to Breathe
Lungevity Foundation
Uniting Against Lung Cancer

This chat will NOT include solicitations for donations or requests for help in fundraising.

These are the questions each representative will answer for their organization:

T1: Which of your volunteer opportunities offer educational and/or emotional support to patients and families affected by lung cancer?

T2: Which of your volunteer opportunities increase lung cancer awareness outside the lung cancer community?

T3: Which of your volunteer opportunities inform patients and/or healthcare professionals about clinical trials and new treatment options?

T4: Which of your volunteer opportunities inform lawmakers of the need to increase federal funding for lung cancer research?

T5: What do you believe is the greatest need that lung cancer patient advocates can help fill?

For more information about how to participate in an #LCSM chat, check out our primer at https://lcsmchat.wordpress.com/lcsm-chat/.  Hope to see you on Twitter!

#LCSM is about sharing information within the lung cancer community. We aim to serve as a neutral voice. In order to maintain a neutral voice, we strive to keep #LCSM free of endorsements and advertisements. All national nonprofits who focus on lung cancer were invited to participate in this chat.

#LCSM Chat 5/22 Preview: Top 10 Key LC Presentations at ASCO 2014

By Howard (Jack) West, MD

Please join us for the next #LCSM chat on Thursday, May 22, 2014, at 8 PM ET (5 PM Pacific). Our topic will be “Top 10 Key LC Presentations at ASCO 2014.” I’ll be moderating.

Every year, many of the key developments in cancer care are presented at the annual American Society of Clinical Oncology (ASCO) meeting in Chicago at the end of May. This year ASCO will highlight several practice-changing results for lung cancer. Impressively, the most important trials this year focus on treating a broad spectrum of patients: first line treatment of patients with an EGFR mutation, acquired resistance in EGFR mutation-positive patients, the MET mutation as a target, squamous NSCLC, general NSCLC that includes squamous and non-squamous NSCLC, one striking finding in stage III resected NSCLC, and even immediately practice-changing results in small cell lung cancer.

A list limited to ten doesn’t allow me to include some notable trials with negative results, particularly those which we’ve already seen in press releases. And while immunotherapies continue to demonstrate their promise, immunotherapy presentations at ASCO this year don’t break significant new ground, and so didn’t make the “top 10” cut (I expect at least one or two on next year’s top 10 list).

For this chat, I’ll post a new chart every 5 minutes, then people can ask questions and comments about it during the chat. Participants can also comment on other attention-worthy presentations not on my list. You can see my top 10 list slideshare presentation on my cancerGRACE.org blog post here. You can find the entire collection of ASCO abstracts here.

I hope you find the top 10 list provocative and interesting. For more information about how to participate in an #LCSM chat, check out our primer.  Remember to add the #LCSM hashtag to your tweets; it’s usually easier to follow or participate if you use http://www.tchat.io/rooms/lcsm or a similar application.

Hope you’ll join us on Twitter Thursday!

#LCSM Chat Topic 05/08: “Lung Cancer Medical Records: What You Need to Know”

Please join us for the next #LCSM chat on Thursday, May 8, 2014, at 8 PM ET (5 PM Pacific).  Our topic will be “Lung Cancer Medical Records: What You Need to Know.” This chat will be moderated by lung cancer patient advocate Janet Freeman-Daily.

Once a person is diagnosed with lung cancer, they quickly begin accumulating medical records in the offices of their healthcare providers.  For patients in early stages receiving curative treatments, medical records may not seem interesting. For those with a diagnosis of advanced or metastatic lung cancer, however, medical records are quite valuable.  Information in the records is essential for obtaining second opinions, enrolling in clinical trials, discussing treatment options online in lung cancer forums, or voluntarily sharing data in research databases.

Examples of key medical records include pathology reports (which state the specific type of lung cancer the patient has), molecular testing results, and scan reports (which may indicate response to treatment and/or possible progression) as well as scan images on CDs.  Records also include biopsy slides and tissues stored in clinics, hospitals, or other facilities.  Knowing where one’s slides are and how many are still available is useful if one wishes to pursue molecular or genomic testing somewhere other than one’s home clinic (e.g., for a clinical trial).

Reviewing one’s records before sending them to a second opinion site, clinical trial, or elsewhere is a good idea–sometimes errors occur due to transcription or communication between multiple medical offices.

Patients, advocates, healthcare providers, and researchers all have good information to share on this subject. Our discussion will focus on these topic questions:

T1: Which medical records do lung cancer patients need for second opinion or other purposes?  How does one access them?

T2:  Tissue banking–where are biopsy tissue and slides kept, and for how long?  What are they used for?

T3: What patient data might patients or others share in research databanks, and what concerns does this generate?

For more information about how to participate in an #LCSM chat, check out our primer at https://lcsmchat.wordpress.com/lcsm-chat/  Hope to see you on Twitter!

%d bloggers like this: