4 replies to this topic

[cousineg]

There are 3 new CML groups on Facebook

CML Survivors and Caregivers Closed Group

http://www.facebook....11443142288107/

CML + BMT http://www.facebook....ups/cmlplusbmt/

CML Ireland http://www.facebook....02594956479613/

Other links: List of CML groups on Facebook

http://www.cmleukemi...n-facebook.html

CML news http://www.cmleukemia.com/english.html

[LLawrence]

Do you know if any comments to a closed group like this show up on you FB friends feeds?  Most people don't know that I have CML yet and although I've read on the FB site, I've not responded for that reason.

[CallMeLucky]

The closed group does not show on your timeline, but keep in mind with Facebook there are no guarantees once the information is out there. 

[LLawrence]

Thanks.  I have no illusions of FB privacy in the long run but would hate for some of my real friends to find out this way.  Only my closest know (for now).

[wallystl]

Good Morning:

I recently started a FB page for CML + T315i mutation.  Here's a link:  https://www.facebook.com/T315i#!/T315i

I'd like to hear from anyone with the T315i mutation who are in a drug trial or on Ponatinib.  Most interested in learning about how others have delt with side effects, reduced dosing, or quality of life issues. 

Tks, Wally