New to Lungevity, hoping to connect and learn

[LizG]

Hello,

 

I am Liz and I've recently been approved to participate in Lungevity forums. I am 28 years old and my mom was recently diagnosed with stage 4 NSCLC. She is currently in chemotherapy and has also had radiation and another non-surgical procedure to help with some of her mets. 

 

I come from a large family and have several younger siblings, including two teenagers who live at home with my parents. This has been a rough few months for all of us. I am a part-time caretaker and full time cheerleader for my mom. I travel from where I live to stay with her 1-2 weeks each month.

 

I am very much in need of people to talk to and share experiences with. I want to learn as much as I can about treatments and palliative care that can help my mom have the best quality of life possible, and I also need some help myself. I find it difficult to talk to my siblings or dad openly about my feelings and fears and hope that I can make some friends and find support here. I also want to learn how to be a better caretaker and an ally for my mom.

 

I'm happy to become part your community and look forward to learning and growing with you all, and becoming a better advocate for lung cancer patients and a friend.

 

Liz

[Donna G]

Welcome Liz  .  Many people here are in you place also.  It is so sad.  As for myself I have been on both sides of the fence. 

I was the patient and was blessed to survive  .  My husband I lost last year to Lung Cancer that was very aggressive , I just kept spreading all over.

Please keep us posted on how she is doing and also how you are coping. 

 

Donna G

[michellep]

Welcome Liz!  I'm very sorry to read about your mom.  I too was a caretaker and I know how difficult yet rewarding it can be at the same time.  Please browse our forums and read as much as you can.  You will find a wealth of information.  If you have any questions or just need someone to talk to please post.

 

I look forward to hearing from you soon but in the meantime don't forget to take care of yourself too ((hugs))

[wendyh]

Liz - I'm so sorry and know how hard it is.  The comment above about targeted therapies - that's what path we're on now too- dealing with NSCLC (my mother), Stage IV, inoperable.  However, I'm also now learning that things change - cancer is far trickier than I ever realized, and you have to constantly research, evaluate and look for new approaches.  My mother is now entering a Phase 3 study - so much is happening in research - and that is reason to be hopeful too.  Happy to share more if that helps.  I new to this board, so wanted to reach out and say hi as well.  

Wendy

[LizG]

Thanks for the responses! We did have the test run for EGFR mutation and that was negative. There's another genetic test that can be run but it's really expensive and not covered by insurance and at this point the doctors have recommended revisiting that test if chemo is not effective.

 

My mom was originally in a clinical trial but was unable to tolerate one of the meds which I've since researched a lot about and found that it's commonly very reactive and can lead to cardiac arrest. Luckily we didn't experience that, but it did cause my mom a great deal of pain and was scary to see.

 

She's currently on a standard protocol chemo regimen and I am looking into other options as well should this not be effective.

 

I will be checking out other threads and posting as I can, thank you all for sharing your stories! It's really nice to not be alone

 

Liz