ColleenRae

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/
 
 

Yep, no concerts for me this season either!

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

I agree with you Tom that personal responsibility is very important but feel that such an approach makes more sense in other kinds of risks than a novel serious respiratory virus that spreads in the air (we have no jurisdiction on the air we breath). When someone eats unhealthy heart clogging diet, they only affect themselves. If someone goes skiing in marked avalanche back country, they only affect themselves (although even then, it breaks my heart how they often put rescue personnel in harms way). When someone deliberately spreads a terrible virus in the air publicly, things are not the same anymore as personal responsibility cannot protect you anymore.
I totally support consent in vaccinations but also worry a lot that anti-facts are becoming so mainstream that polio (polio! the only disease humans managed to totally eradicate) is making it back as a measurable virus in the sewage of the richest city on earth. If society is not careful, I fear extreme individualism will be the end of civilization.  Whether it is crumbling eco systems or novel and re-emerging pandemics, we have to be very careful about supporting public health and public measures. We restrict so many public behaviours that are dangerous to public health, e.g., we "prohibit" someone with Cholera to leave quarantine, we "do not allow" people with hepatitis to handle our food, we "force" drivers to wear seatbelts, we "force" kids to be in car seats, we "force" cities to treat drinking water so it is safe... We do so because all these public measures are proven life saving measures.
So it pains me that schools where I live send kids who have lice home, but not if they have COVID! This is insane. COVID is a neurotropic disease with coagulopathy capabilities; it is not "just a cold". The disconnect in society is sobering and may have tremendous implications if indeed COVID turns out to be a long term mass disabling event. I sincerely hope it won't be but hope is not a good public health policy, harm reduction and the cautionary principle is. I personally believe that as humans stopped drinking untreated water that used to kill millions, we need to stop breathing pathogen laden air. We can do it easily with indoor ventilation and CO2 monitoring, breaking infection cycles, and taking care of earth so that the quality of air outside is not continuously pushed to toxic levels. Sorry if this topic is a tangent to our typical lung cancer discussions.
Keep safe everyone while enjoying life too.

Hi Karen, as I am new to this whole lung cancer thing and just recovering from surgery and chemo and will start tag soon, my family is very conservative. However, we have been the same since the pandemic began as I was protecting my mom who is high risk and we decided that cutting her from our life is not an option (little did I know then that I am the one who is extreme risk). We have already lost my grandfather to COVID, an uncle, another uncle's wife, and an uncle of my husband's (who all lived in different countries) so we know this disease can be a brutal killer.
We always mask outside home with N95 now, do not go anywhere indoors unless critical, enjoy curb-side pickup and home deliveries, do not go to restaurants (luckily I am a cook and a foodie), and we keep all our activities outdoors (still masked as no one respects distancing around here). Only recently did we start our kid in in-person school and he keeps an N95 on and we sign him out for quick lunch in the car. His school has MERV 13 and a commercial grade HEPA in each class. We are still worried but decided the risk vs reward given our precautions is worth it for his sake. 
As a scientist, I read papers coming out on COVID as they come and there is disturbingly mounting and clear evidence of (common) long term serious damage to vital organs even with very mild initial illness in the 1-2 years after infection (and we have no data beyond that), including sudden cardiac events, clots, brain disease which extends to pediatric patients etc. Before things become clearer or actual treatments are here, I think our family's life will be restricted long term as we hope to avoid infection, or at least, to limit viral loads and re-infections, which seem to be the real problem now as each re-infection seems to compound long term risks. Our family was the only one masked when we went to school the first day (a couple more kids wore cloth masks) but that does not deter us and we continue to turn down sit down dinner invitations etc although we know this is not making us any friends. Society has been misinformed that COVID is as benign as a cold and thus they act like the pandemic is over. It is definitely not the case and as my oncologist put it the other day, COVID is in the water now, meaning everywhere, as he was advising me to try my best not to catch it!
Checking COVID deaths in North America shows the horrifying toll stands to this day. Vaccinations seem to have reduced death risk by a lot but not infections nor long term complications. I still intend to get the bivalent vaccine when it arrives here in 2 weeks (had 2 doses + booster so far) but know that current vaccines have limitations and should be part of wider mitigation steps.
People are extremely different in their balancing of risk/reward so very hard to give advice. Just one more data point for you from a fellow lung cancer survivor. Wishing you a safe and enjoyable Fall season!

Karen, it is inevitable that kids in school will get Covid, the flu and a bunch of other weird infections. My sister (who does not have cancer) got Covid last year from kids in the pre-school she is director of, despite all the cleaning and disinfecting--I don't think they wore masks anymore. She was fine but then she's healthy with no underlying conditions. She doesn't really understand why I still isolate, and I don't think that most healthy people can.

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

I'm vaxxed and boosted and will be scheduling the new booster with my flu shot very soon because I'm 6 months out from my last booster. 
My husband and I have never had Covid to our knowledge. We have strict safety practices. We only socialize indoors with a small group of friends and family who are vaxxed, boosted and test negative. If someone who visits is coming off a plane, the visit is outdoors only. I've been to one restaurant in the last year and it was outdoor dining. Our biggest disappointment was having to cancel our attendance at an annual NFL reunion last month because we'd be indoors with too many people whose status we don't know. 
My biggest worry would be getting long Covid. I have fought hard to be healthy and am very risk-averse now. The thought of being in a crowd fills me with anxiety, and in fact my skin crawls when I have to go to Costco (even with a good mask). 

Karen,
I'm also "vaxxed" and boosted but like Lou, I avoid high-risk activity indoors. I also love classical music, having studied classical piano for years but I didn't attend the last 2 years of concerts at the Dallas Symphony and I won't attend this season either. 
I'm a little vexed at the medical community telling us we have a COVID "vaccine". Obviously, they really stretched the definition of the word vaccine because it does not stop COVID. I have about 30-percent of total pulmonary capacity. A bad chest cold could kill me and COVID would plain do me in. So I isolate to stay alive.
Stay the course.
Tom

Heartfelt condolences to you Step and your family.  Your description of her passing helped... That she wasn't alone, wasn't in pain and never has to suffer again.
Sending you huge hugs.
Colleen

VERY happy to hear this, Susan ❤️

VERY happy to hear this, Susan ❤️

VERY happy to hear this, Susan ❤️

VERY happy to hear this, Susan ❤️

Fantastic - just loving hearing these positive outcomes. It gives me so much hope and joy!

I received my 6 month scan results today and I'm happy to say that I'm NED. I've been NED for almost 4 years. Scanxiety still gets the best of me - no sleep last night. In the past, my results were not available to me online but there's been a change at Super Doc's office so they're posting online now. I got the alert last night but I couldn't look! Maybe next time...

I'm with Karen on this.  You need to get your Oncologist to earn their money and push back for you.  Please don't let them delay.
Lou

Your oncologist needs to get his or her butt on the phone and have a long conversation with Dr. Anonymous. I know my radiologist had to, in order to give the more advanced treatment she preferred. 
Are you bound to the oncologist or can you find someone different? 
I'm sure other folks will have more thoughts....
Don't quit-- 

I received a letter from Blue Cross/Blue Shield today denying both a PET and CT scan. My Oncologist hasn't proven that there is a medical necessity to the anonymous Doctor who has never examined me. I don't know how long its will be now.
I'm trying to remain calm. 

GAM,
Well, this situation just sucks!
You can choose to be "good to go" but you might want to consider locking and loading and proceeding purposefully down range to engage and destroy your lung cancer again. You've got choices!
Stay the course.
Tom

I was NED in early Feb, and my subsequent CT was scheduled for late July.
I've been getting light-headed when standing lately and passed out Tuesday evening, hitting the floor hard. I broke my right wrist, my eye socket fractured, badly bruised my right hip, and a tiny brain bleed. A CT also revealed a 2.5cm mass in my right lung and 2 impacted lymph nodes.
So here I am again.
Hearing it now was easier than the first time, but it stripped me of my hope, which really hurt. When I first heard the news, I asked for two things. To see my grown son again and to watch my baby daughter graduate from college with her engineering degree. Both happened in May, and I'm good to go if I must.
 

Nur,
Aside from hypertension, your mom's symptoms appear to be consistent with end state lung cancer. Again, I'm not a doctor so I can't comment on the use or appropriateness of medications but her mental behavior--sometimes saying inappropriate things--is unfortunately typical.
During time when your mom is lucid, tell her of your recollection of fond childhood memories or important family milestones. Give her a daughter's peace of mind that she excelled as a parent.
This part of life is difficult for all of us. Ensure your mom is as comfortable as possible. 
Stay the course.
Tom

Heartfelt condolences to you Step and your family.  Your description of her passing helped... That she wasn't alone, wasn't in pain and never has to suffer again.
Sending you huge hugs.
Colleen

Heartfelt condolences to you Step and your family.  Your description of her passing helped... That she wasn't alone, wasn't in pain and never has to suffer again.
Sending you huge hugs.
Colleen

Hi all,
Mom passed peacefully without any pain or discomfort today at noon EST after 2 days in hospice. She spent her final hours with myself, my brother, and her cousin Robin.
We're all mourning but we're all so happy She was comfortable and not in pain, and that she never has to suffer again. 
In her last few waking hours I told her I gave you all the updates and that you all loved her dearly and she wanted me to tell you all she feels the same.