I have been looking for such message board on LGL for weeks now since having been diagnosed with it recently and finding very little information out there. I have observed other leukemia facebook groups, i.e. CLL, CML, ALL, etc...but nothing on LGL and that's a very sad situation for us patients who suffer from this rare disease. Information is power and that's why I have created a "closed" group on facebook to help patients come together and share their experiences, feelings or learn about the disease and treatment options. Would you please please consider joining the friendly and helpful group on facebook that is aimed to help out each of us in various capacity? My understanding is that I can't put anything specific on the group or my email address here...I just joined this site - but a search on facebook for LGL will lead right to the new group. We could really use such patients whether experienced or otherwise on LGL topics like yourself. Please understand that this is a genuine attempt and I have nothing in it more than the desire to learn more about LGL for myself and help others do the same in similar situation. I have also just consulted with Dr. Loughran myself. Such a humble human being...Thank you so much in advance!
Hi Meesh0724. It would be wonderful to hear from you. Please see my other messages on this thread. I have recently consulted with Dr. Loughran in Hershey and again in tremendous need to do so soon with some mystery surrounding in my LGL case. Please consider joining the closed facebook group on LGL that I'm an admin for. It's new but I'm hoping it to grow significantly and help make it meaningful to as many LGL patients out there now and in future. Your assistance would be greatly appreciated. Thank you!
I went to try to find the LGL facebook page and there are multiple sites. Please post the full name of the FB page so I can find it. I was just diagnosed with chronic t-cell LGL leukemia and what to know more about it. I have probably have had it for more than five years. Thanks!
Hi Ladyjaspy! It's nice to see your response. It's a Group, not a Page. In fact, it's a "closed" group so only the members can view and post messages. I am including the short link to the Large Granular Lymphocytic (LGL)
Please let me know if you still can't find the LGL group on facebook by replying here. Thanks!
Looks like any hyperlink or personal information such as email address gets deleted by the admins here due to this site's terms of services. Well, just try to search for the above LGL group title on facebook and it should work.
I do not know about the registry for LGL? What is it?
My husband was diagnosed in August. He is 33. I would love to join a support group specifically for T cell LGL. Where is it?
There is a wonderful Facebook group that I belong to. I've had LGLL for 10 years but only started treatment 3 years ago. Here's the link to the page. It's a closed private page and you have to get permission from the administrator to join.
https://www.facebook.com/groups/LGLLeukemiaSupport/
My name is Charles Farley....I have had LGL T-cell Leukemia ever since 2006... And I'm trying to meet someone with the same diagnosis,If anyone can help me PLEASE,Thanks in advance... Charles
I am 37 - and diagnosed with this today. Please, where can I find more info. I would love to talk to others who know more about this. My Doctor had VERY little info and I'm finding what is out there is just as limited.
I was diagnosed with T Cell LGL Leukemia a year ago. I am 64 years old. I have pain sometimes throughout my entire body. I have been on Cytoxn for 9 months. I decided to drive to Charlottesville, VA where Dr. Thomas Loughran is now the Director. I got all of my answers to all of my questions. I am very happy to have made the trip and to come home more with more information about this leukemia. I would highly suggest to email Dr. Loughran at the Emily Couric Cancer Center there in VA and just see him for your own.
Be careful of what the oncologists puts you on and how long your own it. He, Dr. L stopped my chemo/prednisone immediately while I was there. Been on it too long.
Lots of pain I experience because of the lgl/RA/Fibro and other problems. Don't give up.
Each day is a new day !
My wife was diagnosed with LGL 11 years ago. She was 51 at the time. It keeps her blood platelets low and she is on Cyclosporine therapy for 9 years. She has severe fatigue, headaches, bone pain. She is now 62 and had to have spleen removed two years ago because cyclosporine was not maintaining platelet counts. This did improve her platelet count but symptoms have not improved.
Can't find your FB page on lgl- was diagnosed 3/2014