Message for 25-year lung cancer. Merry alumni mentor @merpreb!!

Posted by rlf66 @rlf66, 6 days ago

@merpreb. YES I need to know what has worked for you during your journey w/Stage IV lung cancer? over last 25 yrs??
I was diagnosed 9/10/25. Consulted w/oncologist following week. Went for PET scan 10/7/25. Formal Diagnosis from oncologist= stage IV lung adenocarcoma. I have NO mutations but it has metz to right temple, middle of chest lymph nodes. Right temple cancer has been resolved. Fast forward I began my first round of chemo and immuno on 12/3/25. Second round on 12/23/25. Except for some diarrhea NO serious side effects. I am due for third round of immuno on 1/13/26. and then every 6 wees. I am on Pemetrex and carboplastin? the immuno is Opdivo and Yervoy. NOT sure doctor will order more chemo. So please, what has helped you survive and stay around for a blessed 25/+ years. some of this information may be helpful to give others and myself some hope. That we will be around a bit longer than other people believe that we will. Other than shortness of breath, I am doing great. I really would appreciate some info. rlf66.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

rlf66 | @rlf66 | 6 days ago

See above information for @merpreb, et all.
rlf66.
Happy New Year.

Lisa, Volunteer Mentor | @lls8000 | 1 day ago

Hello @rlf66, Merry is such an inspiration, isn't she?! She was a mentor for Mayo Connect for many years and was the first to greet me and many others as we joined Connect. She's taken a step back from mentoring, because everyone deserves a retirement. 🙂 She is still around on Mayo Connect, just not as often.
I'm guessing that you saw Merry's post: https://connect.mayoclinic.org/discussion/celebrating-25-years-of-lung-cancer/

One thing that I like to keep in mind, is that the treatments that were available in the past have been improved upon or replaced by even better therapies or combinations of therapies. Thankfully research continues and directly impacts the options that are available today.
The targeted therapy that I've been taking for the past 5+years didn't even exist 15 years ago. Patients that are newly diagnosed with my specific type of lung cancer are no longer started on that therapy. There is something new that is proving to be even better.
Looking to others for that 'special sauce' that worked for them is instinctive. We are all different, and our cancers are likely different at a cellular level too. Are you being treated with an immunotherapy? I believe immunotherapies for lung cancer started in 2015, with the clinical trials prior to that. Things change quick in lung cancer, and those advancements are great!

rlf66 | @rlf66 | 1 day ago

In reply to @lls8000 "Hello @rlf66, Merry is such an inspiration, isn't she?! She was a mentor for Mayo Connect..." + (show)

@lls8000 Yes, she sure is an inspiration! I do understand totally--- things have changed greatly over the past 20 to 25 yrs.
I have had chemo and immuno on 12/2 and 12/23 of 25.
Today, I had my first cycle of immuno only. It appears that things are coming along well since I was blessed NOT to suffer much of any sideffect after my first three treatments. I was treated w/Pemetrexed and Carboplatin along w/immuno on 12/2 and 1/23. Will be on immuno every 6 weeks. I am on Odivo and Yervoy from now on untill my oncologist change them if YES or NO they are not working. Thanks so much for your positive attitude. Keep up the good work.
Happy New Year.
rlf66