Stage four lung cancer: I want to connect with others

Welcome to Mayo Connect. I'm glad you found us. You may get some answers here, but do look at then cancer group as well--Lung Cancer support group https://connect.mayoclinic.org/group/lung-cancer/
I came to Connect with a cancer diagnosis, and found it very helpful. Hope you will as well.

Hello Linda, @mzlindam14, welcome to the lung cancer group. We all wish you didn't have stage IV lung cancer, but there are many of us here, so I'm glad that you found us! I was diagnosed as stage IV over 5 years ago, with one of the mutation-based cancers, ALK positive. Adjusting to a new diagnosis isn't easy, and it certainly comes with an emotional weight that can be more difficult that the treatments themselves. Live and cherish each day.
What type of lung cancer do you have? What treatments have you had?

Hi Linda,
I was diagnosed with stage 4 lung cancer 5 years ago. It was a shock, but I have an awesome husband who also is a great caregiver when needed, great support from friends and family who have been with me from the beginning. I spent more time in the beginning with my pulmonary team as I had very bad pleural effusions on both lungs. They were very positive and that made me feel better. I talked to others, not with lung cancer, but that stilled helped me to focus on what was important to me and to move on. I didn't find this forum or others until a year later. I, like Lisa have the ALK+ gene mutation. I take a targeted drug daily. My first progression was on my last brain MRI which showed 12 spots and I had those zapped in August and am waiting for my next brain MRI in late December to see if that worked. I have very young grandchildren and spend lots of time with them. I enjoy each and every day.

Good morning
Thank you for sharing with This all new to me I’ve had six rounds of Chemo so far I a CT scan coming up I also enjoy my grandkids they keep me going 😊

@lls8000
Thank you when was told I had stage four lung cancer June of this year I didn’t even know what to do I was so scared

@mir123
Thank you I would be very interested

Diagnosed with Stage 4 Melanoma on the lower right lobe lung in June, surgery end of July. Finished 2nd round of Keytruda treatments last week; ongoing every 3 weeks, 200. CT scans today, no new tumors. Changed my diet in April, much more healthy, weight loss helps, feeling better. Walking more now with increased energy, stay positive.

Sorry to be so late answering here. There are some amazing people and advocates here and I'm glad you connected with them.

There are several foundations that hold weekly and monthly meetups virtually as well. They're free to participate in and welcoming to new members. The Gildas Club/Cancer Support Community has partners across the US. Many meet both virtually and in person. They may not have a lung cancer specific group but I found it empowering to sit with people with other cancers as well.

Resources include:
Go2 Foundation
LiveLung
Lungevity
Lung Cancer Research Foundation
https://www.cancersupportcommunity.org/find-location-near-you
There are also many oncogene pages on Facebook. Even for those without a targetable mutation.

Thank you. CT scans clear, blood work good. Only side effects to Keytruda remain skin itching, third round treatment upcoming. Strong faith, prayer works especially with Peace. Again, Ty. Chuck

@mzlindam14 I am sorry, but glad you found your way here. It is where you will find the support sharing with others. I have not been here long, but everyone appears to bring comfort because we are all going through it one way or another. I was first told I had cancer almost two years ago. It has been very difficult. I did not know about this site and for the most part I felt very alone. I really have not had much support. My children are grown and for the most part living out their own lives. My circle got very very small, but my faith got bigger. I am a Christian and my go to comfort time was spent with someone that knew, and experienced all the emotions I had, and am still going through. I went to His Word and as I read, and cried too, I felt his presence. I wish you health and peace along with all those that are here sharing. God Bless