Karen_L

@BryJ, is it even possible to respond to your tale? I'm sitting here with my mouth open, thinking of all the stuff we don't know until it happens.
I admire you for speaking up about your chart notes and getting food instead of a chest tube.  And, I can relate to ER regrets. Mine was about a pulmonary embolism. I learned that when they say, "We'd like you to go to the emergency room," it's not a question, it's a directive. Ah well, next time.... 
Glad to hear your wife is getting patched up. 
Glad to hear they got all the cancer. 
It's good to be alive, eh?
K

Hi June,
Your experience is exactly why people say if there's a recurrence we must retest for new mutations. Stupid lung cancer is so sneaky. So glad you're seeing options!
Karen

How excellent! Enjoy! ("boyish figure"-- heehee)
K

Hi June,
Your experience is exactly why people say if there's a recurrence we must retest for new mutations. Stupid lung cancer is so sneaky. So glad you're seeing options!
Karen

@GBJ You know, IMO, this "be positive" cancer thing is sometimes more pressure than we need. Just sayin'.
This may seem to be heresy, but it's beyond me how a human can feel positive about something as scary.
We all make peace with our situations in different ways. But I am never positive about lung cancer. I think it's stupid and unfair.  When there's a change in my disease, I'm numb. After a little while, I feel a reprise of the emotions I had with my initial diagnosis: I feel angry and frightened and full of grief.
Eventually, I choose to say, "OK, that's how I feel. I see that, and now I'm going to re-examine my day-to-day and see what I might need to do to make a meaningful life within the new parameters." Sometimes things happen quickly enough that I have to juggle feelings and actions at the same time. That's when I go to my primary defense: dark humor in the face of the absolute absurdity of the situation. But all that other stuff is stewing in the background. It's exhausting. 
Just take care of yourself in whatever way you need to. Each day, find one thing, anything, that brings you peace or pleasure, or even a laugh. Take a deep breath, take a couple, when you feel afraid. Unless it's helpful to you right now, you don't have to be positive. You just need to cope. 
We're here. Keep us posted. 
Karen

Unfortunately, I suspect lung cancer is just doing what lung cancer does. At webinars, I've heard doctors discuss their research; some have a "cancer seed" theory, that lung cancer appears to be gone but seed cells remain and are sparked into action. Their research focuses on identifying and interrupting the triggering processes. 
Just curious-- have you had biomarker testing? Sometimes knowing about mutations of your specific cancer can help you understand your doctor's thinking. In many countries, there are treatment protocols in place for different iterations of the disease.  Having some knowledge of these can help you open discussion with your doctor about steps moving forward. Here's an example of guidelines for NSCLC in the U.S. In a recent webinar, one researcher said that while U.S. doctors aren't bound to these protocols, insurance may not pay for novel approaches. I believe European nations have such guidelines; I don't know if guidance like this exists where you are.
In the U.S., we speak about seeking a second opinion from a different lung cancer specialist. Perhaps that is possible in your country? In instances of recurrence, we also speak about re-checking biomarkers to see if your disease has developed new mutations. There are liquid biopsies that can 
For me, it's important to remember that lung cancer is persistent and effective at working around our interventions. This is why research is so critical to forwarding treatment. 
I hope something in my response offers a way for you to better understand your situation. 
Karen

Hi June,
Your experience is exactly why people say if there's a recurrence we must retest for new mutations. Stupid lung cancer is so sneaky. So glad you're seeing options!
Karen

Hi June,
Your experience is exactly why people say if there's a recurrence we must retest for new mutations. Stupid lung cancer is so sneaky. So glad you're seeing options!
Karen

June, 
What mutations are you dealing with? 
I'm glad your gamma knife experience was smooth. I found the whole process smooth as well, and have had no adverse effects.
I don't know the chemo drugs you refer to, I'm sorry.  But I do know that if you tell them you need to be at your son's wedding and NOT be sick, they may be able to work with you to arrange treatments to meet that dream. (My daughter was hospitalized for four months with a form of lymphoma when she was 22. When she announced that she wanted to be out of the hospital for Thanksgiving and Christmas, the oncologist sat down at her bedside and worked out a new treatment schedule. It was awesome.)
When I was doing chemo, the nurses gave me tons of drugs for any possible side effect-- I think I had three anti-nausea meds alone. They can get you primed like that, too. 
As to the treatment options, I'm impressed that your docs are thinking about trials without your prompting. As part of my decision process, I would look carefully at what phase the trial is in and what degree of a new treatment you'd be experiencing. If you were to do a trial, could you move back to the conventional treatment if you needed to? Questions like that feel important. 
Please keep us posted!
K

@BridgetO, you certainly keep on keeping on!
Drat those obstructions. They are most unwelcome any time, but especially when you are caring for your Dear One and have concerns about friends. Glad you put your own bandwidth first; glad you are taking care of yourself and stepping back from work for a little while. 
Hooray for kitties!
Karen

@BryJ, is it even possible to respond to your tale? I'm sitting here with my mouth open, thinking of all the stuff we don't know until it happens.
I admire you for speaking up about your chart notes and getting food instead of a chest tube.  And, I can relate to ER regrets. Mine was about a pulmonary embolism. I learned that when they say, "We'd like you to go to the emergency room," it's not a question, it's a directive. Ah well, next time.... 
Glad to hear your wife is getting patched up. 
Glad to hear they got all the cancer. 
It's good to be alive, eh?
K

June, 
What mutations are you dealing with? 
I'm glad your gamma knife experience was smooth. I found the whole process smooth as well, and have had no adverse effects.
I don't know the chemo drugs you refer to, I'm sorry.  But I do know that if you tell them you need to be at your son's wedding and NOT be sick, they may be able to work with you to arrange treatments to meet that dream. (My daughter was hospitalized for four months with a form of lymphoma when she was 22. When she announced that she wanted to be out of the hospital for Thanksgiving and Christmas, the oncologist sat down at her bedside and worked out a new treatment schedule. It was awesome.)
When I was doing chemo, the nurses gave me tons of drugs for any possible side effect-- I think I had three anti-nausea meds alone. They can get you primed like that, too. 
As to the treatment options, I'm impressed that your docs are thinking about trials without your prompting. As part of my decision process, I would look carefully at what phase the trial is in and what degree of a new treatment you'd be experiencing. If you were to do a trial, could you move back to the conventional treatment if you needed to? Questions like that feel important. 
Please keep us posted!
K

I’m so glad for you and your mom. Now, go knock your first days at that new job out of the park! 

I’m so glad for you and your mom. Now, go knock your first days at that new job out of the park! 

I’m so glad for you and your mom. Now, go knock your first days at that new job out of the park! 

I'm concerned that you're addressing immunotherapy as a single class. Each immunotherapy is targeted to a particular mutation in NSCLC. An EGFR-mutated patient and a KRAS-mutated patient will be using different therapies, and these will work differently and for different periods of time depending on the patient, their response to the therapy, and the mutation itself. The newer the immunotherapy, the more effective it has proven to be (per a conference presentation from today). I'm not seeing a link to an article in your post. FWIW, "one in five patients" doesn't mean much in a sample size of 100 or 25. And what specific mutations do those patients who discontinue have? Something full of this many sweeping generalizations smacks of clickbait to me more than it does of science. 

I'm concerned that you're addressing immunotherapy as a single class. Each immunotherapy is targeted to a particular mutation in NSCLC. An EGFR-mutated patient and a KRAS-mutated patient will be using different therapies, and these will work differently and for different periods of time depending on the patient, their response to the therapy, and the mutation itself. The newer the immunotherapy, the more effective it has proven to be (per a conference presentation from today). I'm not seeing a link to an article in your post. FWIW, "one in five patients" doesn't mean much in a sample size of 100 or 25. And what specific mutations do those patients who discontinue have? Something full of this many sweeping generalizations smacks of clickbait to me more than it does of science. 

@BryJ You and your wife have been through the mill with all the wrong kinds of "adventures."
I'm so glad you pursued the situation with your PCP, and that you ended up with a pulmonologist who moved quickly to get you all the right tests, etc. I sure hope they biopsied the heck out of all that tissue they harvested. You're going to want those biomarkers going forward. 
Welcome here!
 

@BryJ You and your wife have been through the mill with all the wrong kinds of "adventures."
I'm so glad you pursued the situation with your PCP, and that you ended up with a pulmonologist who moved quickly to get you all the right tests, etc. I sure hope they biopsied the heck out of all that tissue they harvested. You're going to want those biomarkers going forward. 
Welcome here!
 

Austria???!!  Well, that’s really something. The wait adds so much stress for you.
Recently I was annoyed because scan reports didn’t appear in my online chart until the morning after the scan. Usually they show up within 4 hours. I never considered that a real privilege before.
I’m so sorry you folks have to cope with that! 

That’s cruel, IMO. Do they at least post results in an online chart so you can review them?

A call one week after a scan is just awful, IMO. The stress of a new job on top of that is hard. The only coping strategies I can offer are some deep slow breaths and the evidence of her health and energy. 
Hang in,
Karen

Just today I picked up an article about impacts of Covid on the brain. “One of Long Covid’s “Worst Symptoms Is Also Its Most Misunderstood” is about so-called “brain fog.” It’s sobering. From the article: 
A neuro-oncologist at Stanford thinks Covid damages the brain without infecting it directly. She and her team showed that “when mice experience mild bouts of COVID, inflammatory chemicals can travel from the lungs to the brain.”
 
We all know how much lung cancer likes the brain…the parallels between brain mets and Covid are interesting. 
I can’t begin to imagine the long term damage Covid does to the lungs. I do not need to be coping with anything more than lung cancer. No concerts for me, for sure!
https://www.theatlantic.com/health/archive/2022/09/long-covid-brain-fog-symptom-executive-function/671393/
 
 

LilyMir, 
Thank you so much for sharing. It helps me ground my instinctive response with perspectives from a scientific viewpoint. I've passed your info to my husband and will pass on attending concerts this season. 
Karen

Tom, Lou, Judy, Pstar,
How helpful your comments are. It's interesting to see how differently we are all approaching it.
I wish there were more clearcut guidelines. Recently on vacation, a friend was pushing for all of us to go out to dinner. I said I'd go, but only if it were outside. A whole commentary ensued about air circulation and open windows, until I shut it down. I thanked our friend and then said, "I do not eat in restaurants. Period. As I said, I'll be happy to sit outside." 
Tom, I appreciate how you must miss concerts. Lou, I think it's the high-risk places that are of greatest concern to me, too. 
Long Covid scares the pants off of me too, Judy. It sounds like my husband and I are handling things much the same way as you and yours, except mine is getting itchy to do what he loves. I've decided against returning to my work with teachers this year. I can't imagine not doing it, but when the paper runs a story about how anyone with a kid in school will get Covid and how to deal with it, I'm pretty persuaded. 
Thanks!
 
Karen