Not eligible for Immunotherapy. Now what?

@detroitmom23, it's completely understandable that you missed a detail or two in your doctor's description. In my public presentations, I refer to the time following the diagnosis or recurrence as "the whirlwind". You get a lot of information and are being asked to make decisions you don't feel comfortable making. We've all been through it.

I've asked my doctor to write it down. For example, when they first told me I had nonsmall cell adenocarcinoma with strong PD-11 expression and the EGFR Exon 19 deletion mutation, I asked if she would write it down. She replied, "Of course." She wrote it and handed me the piece of paper that's still lying at the base of this computer monitor six years and a cross-country move later! What can I say? I'm a geek. 🙂

My spouse always comes with me to any meeting we think might be important. If she can't be there, I'll ask, and my Oncologist will let me call her and put us on speakerphone. In short, I'm a strong supporter of having someone else there who is charged with remembering the details. I did the same thing when my parents got older, and dad "thought" mom had some type of dementia. They never went to another appointment alone.

It's not unusual for doctors to have different opinions. I'm a civilian or patient reviewer for two different organizations, and there is so much progress in lung cancer research being made so fast that it's hard for anyone to keep up. That's the main reason I encourage a second opinion, especially if your Oncologist is a general Oncologist and not a lung cancer specialist.

Until then, relax and focus on the things you can do now, like a daily walk outside in the fresh Spring air. I've found that one of the advantages of a lung cancer diagnosis is that I now pay more attention to the beautiful and wonderful things in my life. I wish you all the best.

@sjohnson60 , you're probably referring to Osimertinib, more commonly known as Tagrisso. I've been on it for 3 1/2 years. Targeted therapy has fewer side effects than immunotherapy, which has fewer side effects than chemo.

I have been on keytruda for 4 years no side effects thus far thankfully. I hope it is working for u and continues for many years

Welcome, @ladylennie. Do you also have a lung cancer story to tell? I look forward to getting to know more about you and what brought you to Mayo Clinic Connect.

I had multiple small nodules in both lungs discovered by accident in late 2019. They were followed and stable for almost 4 years. In November 2023 they showed growth. I had a pet-ct that showed 2 nodules in my left upper lobe were suspicious. Then biopsy (bronchoscopy) of one showed adenocarcinoma. Pulmonologist did not recommend surgery because of lung function. I had 2nd opinion and we decided on surgery. Lul lobectomy and lll wedge. Both in lul adenocarcinoma, p 2. Left lower was atypical cells, aah. I still have 2 hopefully staple nodules in right lung.

Started pemetrexed carboplatin chemo and just had 2nd cycle. No side effects so far except fatigue. Will have 2 more cycles and then one year of Keytruda. First scans after surgery will be when chemo is complete in mid June. Obviously hoping for no change in right lung nodules.

I'm experiencing this situation now. I also have multiple lung nodules in both lungs after being in remission from Stage 3-B treatment in 2008 for ten years, beginning in 2018 when they begun becoming malignant. Besides the radiation I experienced for the primary cancer in 2008, I've had four different nodules radiated since 2018 and my radiologist and oncologist are telling me we're running out of treatments. The radiologists who read my CT's continue to report that I have multiple other nodules in both lungs that appear to be growing in size. I also don't have biomarkers, but my oncologist at UCSF is considering Keytruda, based on a current trial (IMPRINT) at M.D. Anderson. He has warned me, however, that his patients who have undergone lung radiation are at a higher risk for pneumonitis when on the immunotherapy drug. I'm curious if anyone who has had radiation for slow-growing lung nodules have had experience with Keytruda.

@dougmck, I think @abingham84's mom may have had radiation and Keytruda. You might also be interested in this related discussion:

- Keytruda for NSCLC: What's your experience?
https://connect.mayoclinic.org/discussion/keytruda-2/

I had SBRT (3 sessions) last August for lung nodules and two months later had an episode of pneumonitis. They put me on Prednisone for 59 days which took care of it. I was told also that because of the episode I could no longer have immunotherapy because of risk. I have multifocal lung cancer (independent primary slow growing cancerous nodules in the lung).
I also have pre-existing pulmonary fibrosis which was stable. My pulmonary function tests dropped considerably recently so I will start an anti-fibrotic drug which hopefully will slow down the progression of the fibrosis. I found a research article that antifibrotic drug may help reduce side effects of cancer treatment as well (attached) ...ask your Oncologist

Thank you for this.

Thanks for your reply. So you were on an immunotherapy drug when you had the pneumonitis. and, if so, which one? My oncologist has told me his Keytruda patients have a higher risk of adverse effects if they've had previous radiation but seems to still want me to consider it as he's feeling like he doesn't know how to treat this anymore. I had a very large lung tumor in 2008 we defeated with radiation and chemo in 2008, and then in 2018 I started experiencing these malignant lung nodules. I'm getting ready to schedule SBRT for a fourth one which is now at 14mm. I'm a little freaked out about what to do.