Karen_L

Yep, no concerts for me this season either!

Hi Rosie! Welcome to one of the best lung cancer forums on the web. I, too, had no risk factors, never smoked, etc. Who knows what happened. What matters is today.
You'll find that there's a lot to learn on this little lung cancer road we're on and that learning becomes easier as you grow more accustomed to having a lung cancer diagnosis. I know I was in shock for a long time. Learning helped me feel like I had at least a little grasp on what was happening. 
I want to join my voice to the queries about biomarker testing. The immunotherapies you're being treated with are specifically for patients who are "positive for PD-L1, but do not have an abnormal EGFR or ALK gene." Do you know what your biomarkers are? You might find this information about biomarkers useful.

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

Hi Rosie! Welcome to one of the best lung cancer forums on the web. I, too, had no risk factors, never smoked, etc. Who knows what happened. What matters is today.
You'll find that there's a lot to learn on this little lung cancer road we're on and that learning becomes easier as you grow more accustomed to having a lung cancer diagnosis. I know I was in shock for a long time. Learning helped me feel like I had at least a little grasp on what was happening. 
I want to join my voice to the queries about biomarker testing. The immunotherapies you're being treated with are specifically for patients who are "positive for PD-L1, but do not have an abnormal EGFR or ALK gene." Do you know what your biomarkers are? You might find this information about biomarkers useful.

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

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

As a a coda to Lily's comprehensive explanation of the COVID risk and downside, consider that most of us live in free societies. Freedom is a right, not a duty. We have the absolute right to protect ourselves, but we do not have the right to expect others to conform to our protection measures. We seem to have forgotten this and thus protection strategies, vaccination and the like became a "political issue." 
I have a high mortality risk for any pulmonary malady, especially COVID. To live, I have to take measures to protect myself. Outside of the confines of my homestead, I can't expect others to abide by my measures. Similarly, I can't expect my neighbors to eat healthy, drive safely, drink responsibly, or even get a flu shot. In a free society, we are free to engage in a multitude of life-threatening behaviors. We are even free to kill ourselves; there is no law against drug overdose or even suicide!
With freedom comes the duty of personal responsibility. I am responsible for the health, safety, and well being of my family and no others. People have always had differing ideas for risk and reward balancing. That will never change. Look after yourself and your family and...
Stay the course.
Tom
 
 
 
 
 

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

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

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

My husband is asking if I would like season tickets to performances of a small orchestra. The venue is a very old large church: soaring ceilings, balcony and main floor seating. We usually sit in the balcony overlooking the stage. 
Obvs, Covid, especially long Covid, is a concern. I have been very very conservative in my activities. I attend meetings and church only via Zoom; I do *not* eat in restaurants unless outside. I do attend soccer games in the huge stadium here, but they check vaccination cards before admission and I wear a mask the entire time. 
My husband is incredibly supportive, but he misses hearing live classical music terribly and would love for me to accompany him.
 I’d love to know what your parameters are for doing things in the Covid world. What are you doing? Not doing? What advice have you received? What advice would you have? Any thoughts would be welcome. 
I’m vaxxed and boosted to the max, FWIW.
Thanks in advance,
Karen

My husband is asking if I would like season tickets to performances of a small orchestra. The venue is a very old large church: soaring ceilings, balcony and main floor seating. We usually sit in the balcony overlooking the stage. 
Obvs, Covid, especially long Covid, is a concern. I have been very very conservative in my activities. I attend meetings and church only via Zoom; I do *not* eat in restaurants unless outside. I do attend soccer games in the huge stadium here, but they check vaccination cards before admission and I wear a mask the entire time. 
My husband is incredibly supportive, but he misses hearing live classical music terribly and would love for me to accompany him.
 I’d love to know what your parameters are for doing things in the Covid world. What are you doing? Not doing? What advice have you received? What advice would you have? Any thoughts would be welcome. 
I’m vaxxed and boosted to the max, FWIW.
Thanks in advance,
Karen

My husband is asking if I would like season tickets to performances of a small orchestra. The venue is a very old large church: soaring ceilings, balcony and main floor seating. We usually sit in the balcony overlooking the stage. 
Obvs, Covid, especially long Covid, is a concern. I have been very very conservative in my activities. I attend meetings and church only via Zoom; I do *not* eat in restaurants unless outside. I do attend soccer games in the huge stadium here, but they check vaccination cards before admission and I wear a mask the entire time. 
My husband is incredibly supportive, but he misses hearing live classical music terribly and would love for me to accompany him.
 I’d love to know what your parameters are for doing things in the Covid world. What are you doing? Not doing? What advice have you received? What advice would you have? Any thoughts would be welcome. 
I’m vaxxed and boosted to the max, FWIW.
Thanks in advance,
Karen

Hang in there. One day at a time is about all I can manage when it comes to this disease.

Your dad has had a rough patch but seems to be leveling out a bit. My experience with chemo-induced fatigue is that contrary to what the body seems to want, i.e., lying down, it's the opposite that has a positive effect on fatigue.  I tried to do very gentle exercise and I believe it helped me.
I'm sorry you feel so let down. Would it be useful to consider another opinion at this point? 

Your dad has had a rough patch but seems to be leveling out a bit. My experience with chemo-induced fatigue is that contrary to what the body seems to want, i.e., lying down, it's the opposite that has a positive effect on fatigue.  I tried to do very gentle exercise and I believe it helped me.
I'm sorry you feel so let down. Would it be useful to consider another opinion at this point? 

Your dad has had a rough patch but seems to be leveling out a bit. My experience with chemo-induced fatigue is that contrary to what the body seems to want, i.e., lying down, it's the opposite that has a positive effect on fatigue.  I tried to do very gentle exercise and I believe it helped me.
I'm sorry you feel so let down. Would it be useful to consider another opinion at this point? 

Glad you’re pursuing care for the cough. Durva gave me some wicked pneumonitis….A real drag. So happy to be healed from that. Good luck with getting that under control.

Ale, when my then-22 year old daughter started losing her hair from lymphoma treatment, she opted to take the bull by the horns and shave her head before it could all fall out. She said she felt more in charge that way. FWIW

Ale, when my then-22 year old daughter started losing her hair from lymphoma treatment, she opted to take the bull by the horns and shave her head before it could all fall out. She said she felt more in charge that way. FWIW

Ale, when my then-22 year old daughter started losing her hair from lymphoma treatment, she opted to take the bull by the horns and shave her head before it could all fall out. She said she felt more in charge that way. FWIW

Hang in there. One day at a time is about all I can manage when it comes to this disease.

Your dad's doctor sounds on top of it, so that's something. If it helps you feel that your dad's case is not languishing, you might think of the VATS procedure his first step in treatment. A tissue biopsy is considered the gold standard in diagnostic process.
A complete treatment plan takes time to develop, especially when all the data is not in yet. 
I've learned that the significance of a Stage 4 classification has changed enormously in the past few years. People can live good lives for a long time. Someone in my local cancer group has been around for 16 years since his Stage 4 diagnosis!     
Hang in. It's easy to say, "Take it one day at a time." But that truly has been the only way I get through lung cancer. 
 

Dad is back from the hospital after a pleurodesis. The chest tube was pulled out today. He is short of breath more easily since we got home today, but I’m hoping it’s because of the pleurodesis and he starts breathing better day by day. Chemo/immunotherapy on Tuesday. Taking it a day at a time 🤞

Glad to hear you've been able to rest a bit and that you're feeling well enough to begin to consider easing back to your life. Don't push it, OK? 
That cough...I've never had lung surgery, so feel free to completely disregard this comment. Coughs always concern me; if it increases, it may be worth a call to the doc. Other people with surgical experience will have clearer perspectives. 
Lots of new lingo in that report. I wonder what, if anything, they might do about that gene fusion. Also, does the lymph node involvement concern them? What might be next with that? 
Keep resting....
K