LGL Leukaemia

[GrannyTWest]

Has anyone been diagnosed with large granular lymphocytic leukaemia, if so I'd love to hear from you.

[MsLockYourPosts Passed Volunteer]

There is a good closed Facebook group - LGL Community Support Group. I rarely recommend medically oriented Facebook groups, as most are poorly moderated and end up with too much false or unfounded information posted. This one was started by an LGL patient who was following a CLL group, because there was nothing specific to CLL.

[GrannyTWest in reply to MsLockYourPosts]

Thanks for this, v interesting, I'll take a look.

[LynnB1947 in reply to MsLockYourPosts]

I agree with your assessment of most FB medical patient interest sites. I do belong to a CLL group on FB but I take what I read with a grain of salt unless I've seen verification from doctors or in medical papers. Sometimes I'll put a link on the CLL FB site to a CLL paper or CLL doctor (Jeff Sharman MD) or one of the trusted websites like Patient Power, CLL Society, etc.

LynnB

[GrannyTWest in reply to LynnB1947]

Yes, I fully understand you about consulting my Dr for verification on some stuff. Thanks for this LynnB

[LynnB1947 in reply to GrannyTWest]

Yes, I think MsLockYourPosts has given you a good recommendation on the Facebook LGL Community Support Group. CLL patients are fortunate to have the Patient Power support group run by andrewschorr & CLL Society with bkoffman (Dr. Brian Koffman MD). Both of these websites are very helpful for patients & caregivers. Patient Power covers numerous types of cancer so you may find some help there. I wish you the best ...

patientpower.info/

LynnB

[MsLockYourPosts Passed Volunteer in reply to LynnB1947]

I was an original member of that site. I gave up because I felt that there was information posted that could prove to be just plain dangerous, and the admins, when contacted about it, acknowledged that the posts were a problem but did nothing about it. And the last straw - a couple of members started attracting almost cult like followings and attacking anyone who questioning them. Chris and a couple of others tried to counter with solid information, but the site was just too out of control. I don’t miss it.

[LynnB1947 in reply to MsLockYourPosts]

I appreciate what you do here to keep this website valuable to us CLL warriors ...