Karen_L

Hi Karyn, 
I'm sorry your friend's comment was distressing for you. People mean well but sometimes the things they say are unintentionally hurtful or upsetting. I'm also sorry you are coping with so much. I'm also Stage 4 adenocarcinoma, but have no experience with the infusion combo you're experiencing.  
The  prognosis area of lung cancer has been turned on its head by recent results of research, so I have not found it beneficial to my mental health to pay attention to the survival stats. Not when I have friends in my local cancer group who have been living with Stage 4 lung cancer for 10, 12, 16 years, others who have lived for 10+ with one lung, etc. And these are people with active, meaningful lives. Terminal? Well, everyone is, when you get right down to it. We're just aware of it, more than the average person.
I'm not sure what your friend was getting at, but it seems that adopting a mindset that you're terminal is going to make you miserable. When people tell me I'm so brave or whatever else, I have a choice to buy in to their thinking or not. I think people say stuff like that because they're scared and on some level want to distance themselves from me. Last week, one person told me I had courage. We're good friends, so I could be frank. That was ridiculous, I told him, like I'm not going to do tests or have treatment plans? It doesn't take courage to do that, just common sense. What takes courage for me right now is to build a meaningful life within the parameters I currently have. So, what do I want? Yikes! In my book, that's a question that needs some courage to answer. It's certainly not one I expected at this point in my life. 
I'm glad you found us, Karyn. 

Dear @LilyMir, I so relate to all that you are feeling. The waves of grief and anxiety seem to have a life of their own, don’t they ? For me, the grief can be triggered by seemingly small things.
I would not be able to live with this cancer without my counselor. I call him CancerShrink.  He is helping me to integrate the facts of cancer, my treatment, the changes to my life, and to learn to make a new, meaningful life.
You are carrying so much worry. I hope you’ll think about finding yourself a support person. 

@LilyMir From one post-nasal dripper to another, that post-nasal cough can be a pesky thing. A real nuisance! 
I have no idea how long it takes for Tag side effects to show up. I do know that, if I let it, my imagination can turn any new body thing into a side effect or evidence of progression. Then I remind myself that sometimes I just have post-nasal drip, you know? Or, even if it were to be a side effect, so what? Do I need to know that in order to address the symptom?  
You've got this, LilyMir. You can do it. Deep breaths....

@KamotoIt’s nice to see you here, especially with the good news about Tagrisso. 

LilyMir,
Welcome to Team Tagrisso! I've been taking 80 mg./day since March. After a little nausea the first day or so, my side effects have been minimal: peeling skin on my fingers, more splitting nails than usual, a couple of mouth sores. Oh, and constipation. Like Judy, I am receiving regular heart checks. 
While I'm glad you've found the Tagrisso FB group, I've found it best for me to limit my time there. I've found the EGFR Resistors FB group more helpful to me.
I hope your Tagrisso providers instructed you to be sure to drink plenty of water-- I was told 64 oz.per day. Also I hope that the pharmacy specialists checked Tag against your other medications to rule out negative interactions.
As to weight gain.... I gained 30 lbs while on high-dose steroids. Urg. Once things settle down for you, I bet you'll be able to give more attention to other areas of your life, like losing weight. Try not to worry.
 
 

Such great news! Celebrate!
Karen

Hi Karyn, 
I'm sorry your friend's comment was distressing for you. People mean well but sometimes the things they say are unintentionally hurtful or upsetting. I'm also sorry you are coping with so much. I'm also Stage 4 adenocarcinoma, but have no experience with the infusion combo you're experiencing.  
The  prognosis area of lung cancer has been turned on its head by recent results of research, so I have not found it beneficial to my mental health to pay attention to the survival stats. Not when I have friends in my local cancer group who have been living with Stage 4 lung cancer for 10, 12, 16 years, others who have lived for 10+ with one lung, etc. And these are people with active, meaningful lives. Terminal? Well, everyone is, when you get right down to it. We're just aware of it, more than the average person.
I'm not sure what your friend was getting at, but it seems that adopting a mindset that you're terminal is going to make you miserable. When people tell me I'm so brave or whatever else, I have a choice to buy in to their thinking or not. I think people say stuff like that because they're scared and on some level want to distance themselves from me. Last week, one person told me I had courage. We're good friends, so I could be frank. That was ridiculous, I told him, like I'm not going to do tests or have treatment plans? It doesn't take courage to do that, just common sense. What takes courage for me right now is to build a meaningful life within the parameters I currently have. So, what do I want? Yikes! In my book, that's a question that needs some courage to answer. It's certainly not one I expected at this point in my life. 
I'm glad you found us, Karyn. 

Hi Karyn, 
I'm sorry your friend's comment was distressing for you. People mean well but sometimes the things they say are unintentionally hurtful or upsetting. I'm also sorry you are coping with so much. I'm also Stage 4 adenocarcinoma, but have no experience with the infusion combo you're experiencing.  
The  prognosis area of lung cancer has been turned on its head by recent results of research, so I have not found it beneficial to my mental health to pay attention to the survival stats. Not when I have friends in my local cancer group who have been living with Stage 4 lung cancer for 10, 12, 16 years, others who have lived for 10+ with one lung, etc. And these are people with active, meaningful lives. Terminal? Well, everyone is, when you get right down to it. We're just aware of it, more than the average person.
I'm not sure what your friend was getting at, but it seems that adopting a mindset that you're terminal is going to make you miserable. When people tell me I'm so brave or whatever else, I have a choice to buy in to their thinking or not. I think people say stuff like that because they're scared and on some level want to distance themselves from me. Last week, one person told me I had courage. We're good friends, so I could be frank. That was ridiculous, I told him, like I'm not going to do tests or have treatment plans? It doesn't take courage to do that, just common sense. What takes courage for me right now is to build a meaningful life within the parameters I currently have. So, what do I want? Yikes! In my book, that's a question that needs some courage to answer. It's certainly not one I expected at this point in my life. 
I'm glad you found us, Karyn. 

Hi Karyn, 
I'm sorry your friend's comment was distressing for you. People mean well but sometimes the things they say are unintentionally hurtful or upsetting. I'm also sorry you are coping with so much. I'm also Stage 4 adenocarcinoma, but have no experience with the infusion combo you're experiencing.  
The  prognosis area of lung cancer has been turned on its head by recent results of research, so I have not found it beneficial to my mental health to pay attention to the survival stats. Not when I have friends in my local cancer group who have been living with Stage 4 lung cancer for 10, 12, 16 years, others who have lived for 10+ with one lung, etc. And these are people with active, meaningful lives. Terminal? Well, everyone is, when you get right down to it. We're just aware of it, more than the average person.
I'm not sure what your friend was getting at, but it seems that adopting a mindset that you're terminal is going to make you miserable. When people tell me I'm so brave or whatever else, I have a choice to buy in to their thinking or not. I think people say stuff like that because they're scared and on some level want to distance themselves from me. Last week, one person told me I had courage. We're good friends, so I could be frank. That was ridiculous, I told him, like I'm not going to do tests or have treatment plans? It doesn't take courage to do that, just common sense. What takes courage for me right now is to build a meaningful life within the parameters I currently have. So, what do I want? Yikes! In my book, that's a question that needs some courage to answer. It's certainly not one I expected at this point in my life. 
I'm glad you found us, Karyn. 

Hi Karyn, 
I'm sorry your friend's comment was distressing for you. People mean well but sometimes the things they say are unintentionally hurtful or upsetting. I'm also sorry you are coping with so much. I'm also Stage 4 adenocarcinoma, but have no experience with the infusion combo you're experiencing.  
The  prognosis area of lung cancer has been turned on its head by recent results of research, so I have not found it beneficial to my mental health to pay attention to the survival stats. Not when I have friends in my local cancer group who have been living with Stage 4 lung cancer for 10, 12, 16 years, others who have lived for 10+ with one lung, etc. And these are people with active, meaningful lives. Terminal? Well, everyone is, when you get right down to it. We're just aware of it, more than the average person.
I'm not sure what your friend was getting at, but it seems that adopting a mindset that you're terminal is going to make you miserable. When people tell me I'm so brave or whatever else, I have a choice to buy in to their thinking or not. I think people say stuff like that because they're scared and on some level want to distance themselves from me. Last week, one person told me I had courage. We're good friends, so I could be frank. That was ridiculous, I told him, like I'm not going to do tests or have treatment plans? It doesn't take courage to do that, just common sense. What takes courage for me right now is to build a meaningful life within the parameters I currently have. So, what do I want? Yikes! In my book, that's a question that needs some courage to answer. It's certainly not one I expected at this point in my life. 
I'm glad you found us, Karyn. 

Hi Karyn, 
I'm sorry your friend's comment was distressing for you. People mean well but sometimes the things they say are unintentionally hurtful or upsetting. I'm also sorry you are coping with so much. I'm also Stage 4 adenocarcinoma, but have no experience with the infusion combo you're experiencing.  
The  prognosis area of lung cancer has been turned on its head by recent results of research, so I have not found it beneficial to my mental health to pay attention to the survival stats. Not when I have friends in my local cancer group who have been living with Stage 4 lung cancer for 10, 12, 16 years, others who have lived for 10+ with one lung, etc. And these are people with active, meaningful lives. Terminal? Well, everyone is, when you get right down to it. We're just aware of it, more than the average person.
I'm not sure what your friend was getting at, but it seems that adopting a mindset that you're terminal is going to make you miserable. When people tell me I'm so brave or whatever else, I have a choice to buy in to their thinking or not. I think people say stuff like that because they're scared and on some level want to distance themselves from me. Last week, one person told me I had courage. We're good friends, so I could be frank. That was ridiculous, I told him, like I'm not going to do tests or have treatment plans? It doesn't take courage to do that, just common sense. What takes courage for me right now is to build a meaningful life within the parameters I currently have. So, what do I want? Yikes! In my book, that's a question that needs some courage to answer. It's certainly not one I expected at this point in my life. 
I'm glad you found us, Karyn. 

Such great news! Celebrate!
Karen

4th round of chemo and immunotherapy done. Scans done as well. The main tumor shrank by 50%, the little nodules in the opposite lung disappeared and the pleural effusion is halved in size. It seems most likely chemo is working. My fear is when chemo stops after 2 more cycles then it will be just immunotherapy. My dads Pdl-1 levels and TMB is low. But I am grateful for these victories for now

.Great news! You've worked hard for this!

No changes to what was there post-treatment (i.e., that pneumonitis walloped my right lung), but nothing new  is going on.
Ain’t it grand to be boring?!

Shercares,
Thanks for joining us here. We’re a bunch of good folks, IMHO, and always glad of more.
I’m not experienced with what you’re describing. I am wondering what your physicians say about what’s been happening the past two days. Those symptoms might be GERD but, based on what I’ve heard from others, they might also also be related to lung stuff. The breathlessness makes me wonder about pulmonary embolism, for example, which I’ve had, and involved increasing breathlessness.  So other people’s experience would be useful in many ways, but it won’t take the place of a doctor’s feedback. I’d start with the study docs and be sure a pulmonologist gets to weigh in also. 
Also, I’m curious about the study. The ones I’ve heard about involve trial medications. I’d love to learn about other ones, just for my own knowledge base.
Karen

@LilyMirYep. I told him he’d come home with Covid if he went on the men’s retreat. Sure enough. He’s pretty miserable. I want to know where the “bad cold” kind of Covid is that everyone else seems to have. And my fingers are double crossed that by moving to a different floor of the house, setting up three air purifiers on the floor he’s on, and communicating through Google Meets I’ll avoid it….

You’ve gotten great feedback. The only think I would add is, has she done a Covid test? My husband sounds like what you describe and he’s upstairs feeling miserable with Covid. 
 
Karen

Gosh, that's tough, hope he gets better soon and you never catch it. COVID is certainly not a cold and symptoms vary a lot initially and later on, I know that from family members who had extremely different outcomes. Try to have an extra HEPA in the room you stay in, open windows in the house and wear N95 and glasses when you venture to other rooms. I heard many people were able to dodge household COVID with extra precautions. Please take care! 

Hi Karen 
I know it's worrying but my entire household caught covid the day i had gamma knife done we think, I had an antivirus infusion done the following day and I didnt feel to bad try not to worry about this on top of everything else you have going on 
Take care Justin x  

Shercares,
Thanks for joining us here. We’re a bunch of good folks, IMHO, and always glad of more.
I’m not experienced with what you’re describing. I am wondering what your physicians say about what’s been happening the past two days. Those symptoms might be GERD but, based on what I’ve heard from others, they might also also be related to lung stuff. The breathlessness makes me wonder about pulmonary embolism, for example, which I’ve had, and involved increasing breathlessness.  So other people’s experience would be useful in many ways, but it won’t take the place of a doctor’s feedback. I’d start with the study docs and be sure a pulmonologist gets to weigh in also. 
Also, I’m curious about the study. The ones I’ve heard about involve trial medications. I’d love to learn about other ones, just for my own knowledge base.
Karen

@LilyMirYep. I told him he’d come home with Covid if he went on the men’s retreat. Sure enough. He’s pretty miserable. I want to know where the “bad cold” kind of Covid is that everyone else seems to have. And my fingers are double crossed that by moving to a different floor of the house, setting up three air purifiers on the floor he’s on, and communicating through Google Meets I’ll avoid it….

You’ve gotten great feedback. The only think I would add is, has she done a Covid test? My husband sounds like what you describe and he’s upstairs feeling miserable with Covid. 
 
Karen

No changes to what was there post-treatment (i.e., that pneumonitis walloped my right lung), but nothing new  is going on.
Ain’t it grand to be boring?!

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/