r/lungcancer • u/InterestSufficient73 • 8d ago

Well this is the pits - just venting

UPDATE: MRI Brain was clear!! Yay. Next step VAT procedure next Tuesday. Probably spelling that wrong but it's not surgery- they're popping in a camera to see if there's invasion of the pleura ( chest wall) if so it's stage 4 and we'll have to rework the plan but at least no brain..mets to worry about. I'm happy with that. It's the small wins that I'll take for now.

Newly diagnosed invasive SCCa left lower lobe lung. At first I was positive this would be something I'd be able to handle. Not easily but not that difficult either. I worked scheduling new cancer patients for 27 years so I'm not prone to catastrophizing when I hear "Cancer". Especially with all the advances in lung cancer treatment over the last decade - keytruda is the bomb diggity! Anyways - I keep getting test results back and each one is worse than the last. Zero PD-L1, low Mutational burden score, PET shows an area of concern in the pleura so I'll need another ' fun with cameras' session next week and if the chest wall is involved - another biopsy. The part that scared me a bit is thinking it was likely a T2 and instead learning it's a T3 and likely T4; and the testing is showing immunotherapy won't work on me. My pft scores were terrible so the surgeon is not loving the idea of taking more of my lung as the other looks kinda crappy. Former smoker here. I quit years ago but there's been a lot of former smokers showing up with lung cancer.

I guess I need to start getting my affairs in order but every time I start I feel my brain lock down and refuse to even let me move. Slight exaggeration but I stood staring at my closet for 20 minutes today before walking away. I don't want to trauma dump on my family; they're goin through a lot right now. Guess I'll stop here. I just wanted to get it all down while it's on my mind ( like I'll forget it if I don't) and I think you'll all forgive me. Sending love to all my cancer brothers and sisters out there.

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u/Wyde1340 Stage 4 Squamous NSCLC w/MET amplification 8d ago

I only zeroed in on your mention of PDL1 being 0%. I know quite a few people that had 0% PDL1 and are doing good on immunotherapy with chemo.

I, myself, had 100% PDL1 and immunotherapy alone tried to kill me.

I'd still ask your onco to consider it.

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u/FlyingFalcon1954 7d ago

My PDL-1 was only 5 % and after 5 rounds of chemo carboplatin/paclitaxel + immuno opdivo/yervoy my stage 3b squamous went, according to my subsequent PET and CT scans, into complete metabolic resolution. No evidence of disease!

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u/Wyde1340 Stage 4 Squamous NSCLC w/MET amplification 7d ago

What great news!!

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u/FlyingFalcon1954 7d ago

It has been over four months now and I am getting ready for consolidation radiation. The NED continues to hold. There are still moments where I am in a state of joyful shock and almost disbelief. What a roller coaster ride it has been! WHEW!!!