Multifocal Adenocarcinoma of the lung, continual recurrences

Hello @trudyhs, I have a different mutation, ALK. Were you recently diagnosed? Have you started any treatment yet? Possibly a targeted therapy, capmatinib or tepotinib?

@dedehans, is this the same mutation that you have?

@sheland1, You've already had your share of radiation. I'm glad to hear that they are running biomarker tests on your biopsy tissue. It's the best way to match a treatment to the specific type of cancer. It may not mean that you are headed for traditional chemotherapy. Of course, you are worried, but try not to get ahead of the diagnosis too.
Has your oncologist mentioned the possibility of chemo? Or are they waiting for the biomarker tests to come back?

@ladylennie , I'm sure you'll keep an eye out for any issues after your 4/1 infusion, please listen to your body. These treatments can be life savers, but they are hard on us too.
Has your doctor given you any suggestions on what to do differently prior to or after the next infusion? Are there any proactive steps that can be taken now that they know you are susceptible to the colitis side-effect?

I haven't posted anything for a while. I started Keytruda late July, 400mg every 6 weeks. . My only initial side effects were fatigue and an episode of atrial fibrillation a couple of weeks after each infusion. In January I developed colitis, probably grade 2. The January infusion (my 5th) was cancelled and I had a course of prednisone. A colonoscopy showed all clear, so my next infusion was 2/18. I also have several very minor side effects, which I ignore.

My scans have been confusing. The October scan said the right lung nodule was resolving. But the January one said it was 1.3 cm, which was the original size. So I guess it's stable rather than resolving. I assume the next scan will be in late April or May. My next infusion is 4/1.

Diagnosed May 3023 with multi focal lung adenocarcinoma-RUL and LLL both stage 1A with several GGO- I was not eligible for surgery - had SBRT to 3 spots. 1 year later SBRT to 2 more spots and then another round 6 months later. Last scan showed spots on 2 ribs. Biopsy showed lung adenocarcinoma. Waiting for biomarkers to determine next steps. Will move forward with SBRT for ribs. Biomarkers on first tumors biopsied at diagnosis were different. The hope at diagnosis was it could be controlled - quite the opposite for me. What has been chemo experiences? I’m terrified.

I was diagnosed thyroid cancer 5/2023. CT scans were taken which showed that there were also other problems: multible ground glass opacities in my lungs. They biobsied the largest nodule in my left upper lung (20mm) and found atypical cells. Segmentectomy was done 8/2023 which confirmed it was adenocarcinoma in situ. No other treatments were considered necessary. After 3 months I had CT and PET scan and there were no new GGO:s and the existing 4 had not grown (largest 12mm right upper lung). I’ve had 3 scans after operation with no change and the next one is 12/25. That is a big relief, however, after reading all your experiences, I’ve come to realise that 3 years followup recommended by my doctor is not enough. Thanks to the informative articles referred in your posts I’ve learn that if my precancer is MAC I need to have my nodules checked annually much longer than that. It’s good to know that Mayo Clinic is having a study going on and is releasing an article next fall on MAC. Thank you all for sharing your stories!

I was diagnosed thyroid cancer 5/2023. CT scans were taken which showed that there were also other problems: multible ground glass opacities in my lungs. They biobsied the largest nodule in my left upper lung (20mm) and found atypical cells. Segmentectomy was done 8/2023 which confirmed it was adenocarcinoma in situ. No other treatments were considered necessary. After 3 months I had CT and PET scan and there were no new GGO:s and the existing 4 had not grown (largest 12mm right upper lung). I’ve had 3 scans after operation with no change and the next one is 12/25. That is a big relief, however, after reading all your experiences, I’ve come to realise that 3 years followup recommended by my doctor is not enough. Thanks to the informative articles referred in your posts I’ve learn that if my precancer is MAC I need to have my nodules checked annually much longer than that. It’s good to know that Mayo Clinic is having a study going on and is releasing an article next fall on MAC. Thank you all for sharing your stories!

@ladylennie, Congrats on finishing chemo! Fingers crossed that it’s doing its job. Scans are stressful, it sounds like you are in good hands and having a next-step game plan really helps to lessen some of the anxiety for me. Keep us updated.

Thank you.