r/lungcancer • u/InterestSufficient73 • 4d 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 4d 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/InterestSufficient73 4d ago
I thought the same about the pd-l1 but when I told my oncologist I was excited to hear it was zero he said it wasn't good news. I was quite deflated. He told me why but I was so overwhelmed I didn't absorb it. Unfortunately I worked with this group so they're not pulling any punches with me. I can't complain (as I do nothing but complain) ; I told them to give me everything. After this news I told him to stop treating me as a colleague and talk to me like I'm 5. 😂 We'll see how that goes. MRI tomorrow and vats next week. I'll know more then.
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u/Complex-Analyst-8382 4d ago
thank you for stating this as someone who was diagnosed at stage IV back in 2015 with KRAS g12v NSCLC and zero PDL1, I had an excellent response to immunotherapy and that’s why I’m alive today.
I’m always happy to share my experience when I hear about patients being told that they are not be a good candidate with low PDL1. I started who chemo, then had progression and moved on to immunotherapy which had been newly FDA approved back in 2015. It saved my life and is why I’m here today, ten years later.
I believe in HOPE and never giving up. Best wishes to you.
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u/Exact_Page6925 3d ago
I can’t tell you how much it means to read your comment Complex Analyst. My 60 yr old mom was scuba diving and hiking caves with us in April, and in May she had an annual ct then pet scan that confirmed stage 2b nsclc. She is kras g12v, and I am terrified. Would you mind sharing the timeline of your diagnosis/reoccurrence and what treatment all was? My mom had lower left lobectomy which got the small nodule and 1 lymph node. Her 3rd chemo of carbo/alimta is next Thursday. Plan after 4th round is a year of keytruda.
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u/Complex-Analyst-8382 3d ago
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 🤍
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u/FlyingFalcon1954 2d ago
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.
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u/Complex-Analyst-8382 2d ago
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
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u/FlyingFalcon1954 2d ago
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.
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u/Complex-Analyst-8382 2d ago
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.
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u/FlyingFalcon1954 2d ago
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.
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u/FlyingFalcon1954 3d 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 2d ago
What great news!!
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u/FlyingFalcon1954 2d 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!!!
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u/InterestSufficient73 4d ago
Thank you so much for your thoughtful response. I'm in touch with a couple of MTOP navigators I worked with years ago and they've both been very helpful. It's early days yet and I halfway regret knowing how much I know while also knowing how much I don't know about lung cancer. I'm reading my reports and realizing I have to stop or I'm going to lose my mind. Tests only tell half the tale.
I've started work on getting all my financials taken care of, I only have one investment account still out there but I'll have that wrangled soon. All my beneficiaries are lined up. For some reason I can focus on that but not getting my purses or personal effects in good order. Oh well. I'll try again tomorrow.
All the best and sending hugs back atcha.
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u/InterestSufficient73 4d ago
Sorry for the loss of your twin. That's a hard blow at any time. I recently lost my brother but we had 7 years between us All my stuff is pretty much in order but I have some nice ish handbags and earrings I want to get to my niece and great niece but that means telling my family and I don't want to do that at this point. No family drama, they're normal and a tiny bit boring like me. I just don't want everyone calling or showing up all uncomfortable and acting weird and stuff. Maybe I'll just box up the stuff and let my husband tell them when I'm gone and they can come get it. I'll figure it out later. Still need to get the cremation planning done and paid for. Sorry for the stream of consciousness writing. Time to seek out some sleep. Good night and sending hugs.
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u/ThisSelection7585 4d ago
I started donating away a lot more good stuff when I had my biopsy just incase. When it send back positive for NSCLC I kicked into high gear, I know part of it was I didn’t want to leave it for my family to deal with (incase ), moreover I realize I wanted to be around to regret giving away some really good stuff …does that make sense? I know it’s kind of crazy but that drove me to parting with and donating away good stuff.
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u/InterestSufficient73 3d ago
That's exactly what I want!! 😂🤣 Regretting giving away my favorite bags!
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u/Direct-Di 4d ago
Trading retorts in your own can lead to panic I've found. And when u asked the surgeon it was, heck no, that's not what that means. Google can be a friend and an enemy. I know what you mean by delay. My personal stuff is still outstanding to do. And I really need to organize a small celebration of life for my twin geothermal who passed right before my rul lobectomy (female here).
I had been good and typed up information for my poa and executor, but realize I should separate the two. And they need updating, especially the password list. I have not done the 5 wishes type document, which i should. I should do a short video too so it's clear i excluded direct family on purpose (they are not here for me, only used me, pitted people against me). I don't wish them bad, but they will not see a dent if lobe.... I'd rather it go elsewhere. Ah the life I'd a single right.
Anyway, today I was supposed to go to the gym, order and pick up things at a store. I did nothing. There's tomorrow and you know you do need those useless days.
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u/GiaStonks 4d ago
Sending you hugs, from a stage IV NSCLC patient. It sounds like you really need a shoulder to lean on right now. Your cancer center should offer a therapist/navigator/social worker who can listen and share advice if you're interested in it. Throughout my 10 year cancer journey it's these support teams that got me through the worst of it all.
You don't have to do everything all at once and some things are easier to take care of than others. Maybe start with making sure you have beneficiaries listed on your bank, investment, retirement, and insurance accounts. No lawyer required, easy peasy. Then consider completing the standard Advance Directive form at your hospital and have it filed with them and your PCP. Should anything go sideways your wishes will be known.
For now, just get through each minute, hour, and day. Support groups, in person or online, can bring light into your day and ease your fears just knowing you're not alone.