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Hello all!

I've been viewing topics on-line via the Lungevity facebook page for several months and just discovered that I could join this private site.  I was diagnosed in April 2021 with stage IV non-small cell lung cancer, RUL, adenocarcinoma, with malignant pleural effusion & enlarged mediastinal lymph nodes.   I'm not going to rehash my treatment thus far, only to say I have had success in reducing my main mass, and the pleural effusion has been gone since July.  While I've also had some recent setbacks, I am encouraged by my oncology team and their responsiveness in treating me.  I'm seeking a supportive community where I don't have to view on-line negative comments about whose loved one died, how long they lasted, etc.  It's just not helpful!  Any recommendations for a good forum?  

Carla  

 

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Hi Carla and welcome. This site is a great resource for all types of lung cancer and mutations. There are also LUNGevity private Facebook groups specifically for various mutations and treatments like targeted therapies. However, I don't think you can avoid the loss of members or setbacks in any of these forums because it does happen. But my view is that the information I get, even from others' setbacks, is invaluable. 

I also follow the GO2 Foundation, LungForce (American Lung Association), American Cancer Society, cancerGRACE.org, the White Ribbon Project and other cancer groups generally because they often provide helpful advice. 

P. S. I forgot to add the Lung Cancer Research Foundation as another organization I follow. 

Edited by Judy M2
Added P. S.
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Thank you, Judy.   I agree, and I'm looking to learn from others as well.   I forgot to mention in my intro that I have an Exon 20 mutation.   

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Judy,

Welcome to the club nobody wants to be a member of.  I'm sorry you need to be here but glad you found us.  This forum (and all the sub-forums) are for those of us who have or have had lung cancer.  We share our experiences here to help our fellow sufferers to get through this journey.  I believe you'll find that whatever the situation someone brings to us or asks a question about; there are folks here who have lived through it and will be able to help by sharing their experience and gained knowledge.  In the case of EFGR Mutations we have a sub-forum for those mutations and you can find it here.  So feel free to come here anytime to share, ask questions, get feedback from others on a similar journey or just to vent, if the need arises.

In the meantime, I look forward to learning more about you and seeing you around the forums.

Lou

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Knowing your mutation is a big help, Carla. I can recommend the following LUNGevity Facebook groups for you:  Exon 20 group, LUNGevity EGFR Group and LUNGevity EGFR Resisters Lung Cancer Patient Group. In those groups you'll find that there are several new treatments approved for an Exon 20 mutation, which in the past has been difficult to treat. 

Sometimes group members have to step away for a while when bad news seems to come too often. Recently, the moderators offered a Zoom session dealing with loss, so they are sensitive to the needs of the group. And LUNGevity does have regular Zoom meetings generally. 

I do recommend casting as wide a net as possible so that you can stay up to date about advances in research. It's good to become an educated patient. 

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