Well this is the pits - just venting

[u/InterestSufficient73]

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.

[u/Complex-Analyst-8382]

I was dxd in 2015 after developing sudden. vertigo like symptoms a few weeks after hip surgery at 55. An urgent head CT found a brian tumor and I was immediately admitted to a neuro unit! Tests and more scans found a lung tumor - Stage IV NSCLC Kras g12v! My first treatment was stereotactic radiation for the brain tumor, and then I began chemo, which was carbo and pemetrexed. I actually had a very positive result with those treatments initially and was NED 6 months later. A routine CT scan a few months later found that the Lung tumor was back and was very aggressive. And then had high doses of radiation while we waited insurance approval for me to start immunotherapy. which had just been FDA approved Because my PDL1 was zero my oncologist chose to put me on Opdivo because it was approved for those limited PDL1 and back then you needed a high PDL1 for Keytruda.

I was a super responder despite side effects which ultimately required me to stop! I am doing well despite no further treatment and living life! I’ve become a patient advocate and love to support and inspire others!

I wish your Mom the very best 🤍

[u/FlyingFalcon1954 → u/Complex-Analyst-8382]

Suddenly and out of the blue I developed significant allergic reactions to bandages of all things where I never had a problem before. I blister and have a burning sensation almost immediately. I am taking Opdivo for 8 months as of my infusion today and I believe my allergic reactions may be caused by my Opdivo ramped up immune system. I am very curious as to what symptoms caused you to discontinue Opdivo and how long were you on it before you stopped? I also believe it was the immune therapy that led to my NED more so than the chemotherapy.

[u/Complex-Analyst-8382 → u/FlyingFalcon1954]

I had a lot of joint/muscle pain and fatigue- but also developed pneumonitis three times which lead to the discontinuation. All are know side effects. I don’t know anyone who had your reaction, but there are countless potential effects. Despite them all, it saved my life and I have no regrets and would hope I could potentially try it again, if needed! I was in for 9 months December 2015 - August 2016. Still stable and very thankful

[u/FlyingFalcon1954 → u/Complex-Analyst-8382]

You have been exceedingly patient and kind in answering my inquiring and at times redundant questions. I have learned so much. I thank you!

I am actually dealing with an inflammatory condition of my right lung upper lobe that has not been described as pneumonitis at this point although it did require a biopsy because it was inflammatory PET active. I have also been concerned about taking an 8-10 week pause off Opdivo while I do 6 weeks of consolidation radiation (they don't do both at the same time out of concern of pneumonitis) but after reading your experiences and a limited number of study reports I have increased confidence that my opdivo treatments will continue working well during that time and I will be able to continue with the projected full 2 year protocol without losing significant opdivo benefit momentum. Again I thank you for your time and clarity.

[u/Complex-Analyst-8382 → u/FlyingFalcon1954]

You are very welcome.

I also should point out that when I originally had pneumonitis I did take treatment breaks. I actually had it three times - the third time it developed one day after an infusion and I had a really high fever and ended up in the emergency room (ironically almost exactly 9 years ago (8/31/2016) that’s when they knew it was time to stop. The other two times were pretty much asymptomatic and it showed up on routine follow up CT scans. I did have a bronchoscopy after the initial boat and it was definitely inflammation and not any new cancer.

[u/FlyingFalcon1954 → u/Complex-Analyst-8382]

Studies do seem to dictate that once helper T cells are Opdivo stripped of their PD-1 "blinders" and are essentially re-programmed to recognize cancer cells the effect seems to be permanent and a break of up to 12 weeks generally has no effect on Opdivo durability that may extend into years after even six months of infusions.

I believe you and I are both "super responders" and our immune systems made the transition quickly and perhaps yours too much so that you developed inflammation that was damaging. I hope that is not in the cards for me but from what I have read as short as a six month duration of Opdivo might be enough to institute permanent T cell response. I am so grateful for this opportunity for more time on the planet. Today your story is my inspiration.