Living with lung cancer - Introduce yourself & come say hi

@richcolleen- Welcome to Mayo Connect. I'm glad that you found us and there are many to talk with on the Lung Cancer Group. I have stage 4a multifocal adenocarcinoma of the lungs for the past 10 years and 10 years before that had a fast growing adenocarcinoma. I am a mentor for Mayo Connect's lung cancer group. I have not had immunotherapy but have had regular, nasty chemo.
There are many people here who are taking Keytruda. I hope that they will chime in and answer any questions that you might have about this drug, including, @liz8716, @bentrivercarla
What kind of cancer do you have and have you had any other treatments? You must have been devastated to hear that you had lung cancer. I know that I was. But we march on, don't we? Are you feeling better during your "off" time?

My name is Colleen also and have stage 4 lung cancer. Meet Mrs. Trait and she suggested this sight. Had 8 treatments of chemo (pemetrexed, carboplatin and pembrolizumab every 21 days.) get sick 8-11 days. Decided to take 3 weeks treatment off trying to recover from last infusions. Think it would be helpful talking to patience with same diagnosis.

This week's Mayo Clinic Connect member spotlight features @Cindylb, a member who has been active in this discussion and often supports others here in the Lung Cancer group. Get to know more about @cindylb, her Connect experiences and how getting support from all of you helps. You'll also get a glimpse of Cindy and what she enjoys offline, too.

– Sustained on Her Journey by Connect Members: Meet @cindylb https://connect.mayoclinic.org/page/about-connect/newsfeed-post/sustained-on-her-journey-by-connect-members-meet-cindylb/

Be sure to subscribe (+Follow) the About Connect page https://connect.mayoclinic.org/page/about-connect/ and see new member spotlights published every 2 weeks.

@mbach1074 - Welcome to Mayo Connect and good morning. My lung cancer was found much like yours! I bumped into something and after a couple of weeks, when the pain hadn't subsided I had an Xray- It was very obvious that I had a lung tumor and not broken rib. I'm glad that you are already in treatment. What kind and stage of lung cancer do you have?

Hey new here, but been reading a lot of the post that arre here. Im an 80 year old wih lung cancer. Kinda funny how it has all come about. Last Feb, I fell on Ice and hurt my shoulder. I had let it go forawhile until I finally went to the Doctor to have it checked. They most certainly knew that I had rotator cuff. But, an MRI was ordered. Turns out no Rotator cuff, but rather a tumor Went to a local radiation oncologist and then from there I went to Mayo. What A GREAT experience that was. At any rate, I just started Immune therapy once every three weeks. After my first treatment, there seems to be no side affects. Dont know how long that wll last.Right now I feel very good.
Thanks for you forum
Merle

He is not good about answering questions on line at all. I can ask him questions when I see him and he will answer but does not really "discuss" things. Wakelee is good about answering questions but she is not technically my treating doctor. Makes it more complicated as there is no real treatment for my cancer.

@margot69- I know, the chemo and all the other crap is wreaking havoc on your health. I'm sorry. If there's a change in how you're feeling it's most likely that last thing that you had.
If you have the strength it's beyond time to sit your oncologist down and tell him that you don't feel like you are getting enough information from him. That you know that you are I'll but you need to know the truth, all of it
Can you do that?

Hi Merry,
I will check out that link, thank you. I am not having a good week, feeling sicker every day since tgat Infusuon but not sure if it is the cancer, chemo or Keytruda.
No, they did not mention dental care but I try to watch that closely. Due to chronic dry mouth and throat for years. I had $$$$ of dental work last year. Great!! My Oncologist tells me next to nothing.

@merpreb I have not had this frank discussion with either yet as I've just noticed the problem after my regular 3 week bloodwork/Dr. Consult/Infusion yesterday. In typing up my notes afterwards I see a pattern wherein my 2nd-opinion-Dr suggests a course of treatment that my primary oncologist immediately overrides, then later arrives at the same conclusion and this has been very successful twice during my treatments which have included: simultaneous Cisplatin and radiation for 5 weeks one year ago. Followed with Imfinzi immunotherapy which allowed my cancer to spread in 2 months to lung 2 as well as into blood stream, lymph nodes. (I am of the 2% of Imfinzi patients that this happens to apparently. Lucky me.) Stage 3 is now at Stage 4 NSCLC. Another 2 months of Taxotere chemo followed that didn't arrest growth either. In addition to PET scans every 3 months, my CEA counts in my regular blood tests (every 3 weeks prior to infusions) have proven to be very accurate in tracking my successes and failures in treatment. Apparently this measurement isn't commonly used for lung cancer, but works precisely well for me. At this point I brought in my 2nd opinion oncologist who suggested I get Foundation One testing. Among other things this showed I had PDL of 70. He suggested I switch chemo to Alimta and my local onc agreed. This brought my CEA number way back down and PET scan showed great promise after 6 infusions. He also told me that "when Alimta stopped being effective" (as he knew it would apparently) we should ADD Keytruda simultaneously to Alimta. And that's where we are yesterday. CEA number has started slowly back up. My primary oncologist wants to get me into a clinical trial suggested by Foundation One and that is being more thoroughly investigated to see if I qualify and Keytruda will be ordered and processed through my insurance before I get it in 3 weeks. My primary is not sure about adding it to Alimta and is concerned about overwhelming side effects. In typing this to you just now I think I have answered my own question/concerns and should be glad that my primary is open to my secondary's suggestions and is thoughtfully concerned with side effects on me. So I guess I'll see how this all transpires in a few weeks with fingers crossed that Alimta can keep the wolves at bay in the meantime. Very grateful to have 2 good doctors who try to solve these mysteries and haven't given up on me.

Hi @margot69, so good to hear from you again. I was wondering about you. @karen43 and @lady1lake have experience with whole brain radiation therapy (WBR) for metastasized lung cancer. (https://connect.mayoclinic.org/discussion/small-cell-lung-cancer-1/)

Did your oncologist talk to you about dental care before starting WBR?