50years old diagnosed in May 2025 with PE.in my left lung&a 7.7cm mass in my right lung.only symptom was coughing up blood regularly.

[u/Level-Hyena9098]

Since being diagnosed the biopsy came back as stage 3 NSCLC. I've done 6 chemo infusions.the first 2 was with carboplatin&taxol.but the third one I had an allergic reaction to the taxol&almost went into shock.so they changed the taxol to a a abraxene.andbi had no more problems.radiation went well and the tumor was shrinking at such a rate that they had to adjust the radiation field 4 times. They stopped my treatment to give my body time te recover.i go for blood work tomorrow &for a scan on Friday.Surgery was never an option for me because the tumor was wrapped around my airways and arteries.So I'm just hoping that it w hasn't spread.Last pet scan only showed the one mass in the right lung.Hopefukly it has shrunk enough that they may be able to reset it. I'm not sure what is next,but my oncologist is saying probably 1 hour a week immunotherapy infusions for a year. Just hoping for the best.prays to all stay strong and try to stay positive.just because we have cancer doesn't mean cancer has us!!take care of your mental health as well as your body. I think most people don't realize that mental part of this journey is as hard and important as the physical. I believe you let your mind get convinced that it's over,then it will hard survival alot harder. Stay strong and positive. God bless you all. And good luck

[u/Ok_Yellow_1958]

Mine was very close to the same. Originally I had pneumonia in left lung and triple PE in right. Followup scan after pneumonia found 3.3 cm mass in upper left lobe. 6 infusions of carboplatin/Taxel, plus 30 radiation treatments later oncologist gave me a 4 week recuperation rest. Mass had shrunk to about 1/2 its original size and 2 affected nodes are now normal. Have had first infusion of Durvilamab a week ago. First four infusions are scheduled 2 weeks apart then remaining treatments monthly for one year.

Stick with your treatments and I hope you have a good oncologist. Mine has been excellent answering my questions, guiding me and being a great cheerleader. Let's beat this thing!

[u/Wyde1340]

Have you had biomarker testing?

[u/Level-Hyena9098 → u/Wyde1340]

Not that I know of maybe why I'm going for labs tomorrow.

[u/Wyde1340 → u/Level-Hyena9098]

If you have a portal, you can email your onco and ask about it.

Biomarker Testing can be done by blood or by tissue retrieved during a biopsy. The biopsy tissue would be more exact.

[u/Level-Hyena9098 → u/Wyde1340]

What do biomarkers tell you

[u/Wyde1340 → u/Level-Hyena9098]

There are 8 "targetable" biomarkers: ALK, EGFR, MET, RET, KRAS, BRAF, NTRK, ROS1. If you test positive for any of these, you may be able to take targeted therapy (aka TKI). Usually it's an oral pill you take at home. They usually have less side effects.

If you have PDL1, you may be able to do immunotherapy (which is an infusion). Also is supposed to have less side effects.

[u/Wyde1340 → u/Wyde1340]

For example:

I have the biomarker (also called mutation) known as MET. I have been on targeted therapy- 1 pill a day for over 6 years. I've been stable just as long. I have no real side effects.

[u/Typical-Meringue-890 → u/Level-Hyena9098]

They tell you what mutations your cancer has and they could even change the diagnosis. I have a post below describing how this happened with my dad. Large central mass involving the bronchus, intensely FDG-avid on PET, classified as squamous NSCLC based on morphology, but further testing showed it was adenocarcinoma, which requires different treatments. 

[u/Wyde1340 → u/Wyde1340]

Also, if you're on Facebook, join this group: https://www.facebook.com/groups/younglungsupport/?ref=share&mibextid=NSMWBT

As well as: https://www.facebook.com/groups/lcnetwork/?ref=share&mibextid=NSMWBT

[u/zeshef]

The central location, the chemo type, and mention of immunotherapy tells me this may be squamous histology. This would have been derived from a tissue biopsy, by a pathologist that would have also stained for PDL1 concentrations. The same tissue sample and also a blood sample (called a liquid biopsy) should also be sent to molecular testing called Next Generation Sequencing - where they will sequence the DNA and RNA to look for targetable mutations. Most common for squamous is FGFR1, PIK3CA, DDR2 and EGFR. Each one of these or a combination are types of drivers the cancer cell is addicted to, and some drugs can interfere (inhibit) these pathways and allow for targeted cancer cell death. Platinum based chemo (what you were given) isn't targeting cancer but it works by interrupting processes in all cells in the body (just as a comparison).

Ask about this test to make sure it gets done. After radiation the tissue may be "damaged" and won't yield a clear result.

Also, after radiation there could be some side effects that are delayed. Make sure to stay in close contact with your care team to help support radiation side effects in the coming weeks or so.

[u/Typical-Meringue-890 → u/zeshef]

My dad a large central mass involving the hilum and bronchus that was initially mistaken for squamous cell carcinoma and they were going to go ahead with the same chemo as the OP. IHC revealed it to be poorly-differentiated adenocarcinoma, solid pattern. 

Bio marker testing is definitely a good move.

[u/zeshef → u/Typical-Meringue-890]

Yes it's standard of care. However, "biomarker testing" will not describe histology (squamous vs adeno). That is the job of a pathologist looking under a microscope and performing various staining protocols (as you mentioned, IHC etc). It sounds like the pathology lab was not specific enough in your case and misinterpreted the actual histology.

[u/ThisSelection7585]

Mine was found on xray from bronchitis incase it was walking pneumonia because I had one and only one cough up of blood. The wheeze and rattle went away in anti biotic so I thought I was fine. It suggested a ct scan and that came back suggesting biopsy..The diagnosis of NSCLC was started on carboplatin/pemetrexed/Keytruda because the mass was big (~5.8 cm) Biopsy showed nothing in lymph but PET lit up local lymph and 2 little nodules all within the lung. Nothing in the brain. I never asked what the % shrinkage by what time or what size was acceptable for surgery but they say they’re pleased with the response.  Lots of prayers by my supports and me, little blessings along the way include my tolerance of therapy (no nausea!) my biggest side effect was fatigue, and constipation and difficulty swallowing the first days after infusion, one day of flu like symptoms but no fever. I like the visit wrap up they print me so I compare my labs each time. Mostly the dropped blood counts which was expected and not serious. Another blessing is the summer job that happened for our teen son that is based on his favorite hobby activity! I wanted something for him to be away from here incase it got bad but this was better than any option I could’ve imagined. Attitude helps a lot…you’re correct! Thinking good thoughts, prayers of comfort, healing and inner strength 

[u/Complex-Analyst-8382]

I’m a ten year Stage IV NSCLC survivor thanks to immunotherapy-I hope you have the same success with it.

[u/zosgan]

Stay strong 💪. You will overcome this. I know many people who made it through even worse cases, and I believe you can too.