ALK Positive Support Group Rules
The goal of our community is to provide Information, Support, and Empathy. This group is focused on ALK-positive lung cancer- it will probably be your most relevant and up to date source on ALK-positive lung cancer, especially ALK-positive TKI medications.
Members can share whatever they wish, ranging from their personal health journey to emotional experiences of their diagnosis.
● Each member must complete The Support Group registration located here prior to being accepted into the Facebook online support group, linked here
● The Support Group membership directory is populated from the registration form. It is shared with all Group members, allowing members to connect and to learn more about each other.
Introductions -One Week Deadline!-
● Upon acceptance you will have one week to introduce yourself, and to confirm you have a relationship with ALK-positive lung cancer (or taking an ALK TKI). This short timeline is to protect everyone’s private information. (See below section for suggestions.)
● Be nice. Many here are looking for support, empathy, and to vent from time to time. Please be respectful in your replies (empathy). If you cannot say something nice, don’t say anything at all.
● Venting may include strong feelings and language. Do not edit or restrain each other’s speech.
● Post only ALK+ related issues. Inappropriate/off-topic posts are considered to not benefit the ALK+ group. Posts can be flagged by Admins as well as members.
● No Sales/No fundraising. Too many opportunities to be scammed and we want to keep this community focused on treatment & personal support.
● No posting of inspirational-type posts, prayer requests, support requests for members outside the community, etc. While this community welcomes all faiths, or lack thereof, we only post ALK+ relevant posts. If you are a non-theist, please do not comment disparagingly on belief-related posts; please skip over the post.
● Posts offering excess medication to members is not allowed. The trade of medication is illegal. This could cause our Facebook Group to be closed.
You will be permanently blocked if you violate the rules below:
● SPAM posts, sale of any items or programs, posts attempting to gather emails
● Blocking of an Admin or Moderator.
● Attacking/flaming/shaming another member for anything.
● Being disrespectful of another member’s belief system or lack of.
● For serious violations that don’t warrant permanent blockage, a member may be immediately expelled without notice. This is considered a one-time warning. The member may request reentry after two weeks.
● Inappropriate/off-topic posts: If an Admin removes a post, the posting member will receive a warning message. After three warnings a member will be removed from the community.
MAKING YOUR INTRO
Below are a few suggestions for your introduction to the ALK+ Facebook Support Group. As a minimum, confirm your relationship with the ALK mutation (or your TKI).* The more information you share, the better, because you may reveal something we don't know already about treatment options or we may be able to help you!
Is a special diet being followed?
What profession/career at diagnosis?
Do you consider yourself (survivor) to have been healthy and active at diagnosis (group statistical question)?
Where do you live (city, state, or province)?
Which treatments have been received and receiving now?
Are you the survivor or the caregiver?*
What were the results of past treatments and if you've taken multiple TKI's, what caused you to switch?
At what age was diagnosis?*
Where is primary treatment received (is it a university/research facility)?
How long ago was diagnosis?
The Community Calendar can be used by anyone if you would like encouragement from the group during your scans or appointments; you are welcome to enter your details into the calendar
Check out the photos in the Facebook support group page.
The ALK Positive Support Group allows ‘VIP access’ from time to time. For example, a university healthcare professional who wishes to tap into a very focused group to design a study could be a VIP. This is not usually available to them outside of clinical trials.
In regards to your information, they are still bound by the same laws as if they were your doctors. If you don’t want them to have access to your comments and posts in the group, you can BLOCK any VIP. Admin will specify in their welcome message that they are a VIP. Also, you can search the directory and see only posts with 'VIP member" in it, at which point you can block them.