Karen_L

Welcome here, and while it stinks that you have to seek out a lung cancer support network, this is a great one. 
I'm three+ years into NSCLC, with mutations that do not respond to immunotherapy, so I'm afraid I can't offer much specific feedback. I just wanted to welcome you and remind you of the value of deep breaths in the face of scary changes.  

@gaylepc  Welcome here! In terms of learning, there is a lot to learn. Lungevity is a great place to get a foundation. I'd recommend starting here.
I advise two other things. One, if (when) you feel overwhelmed with all the information, stop. Take a break of at least a couple of hours to settle your responses and questions. Please remember: lung cancer research is booming and information changes rapidly. 
Two, read only reputable sites. Lungevity is one excellent source. Mayo Clinic, Cleveland Clinic, sites of federally designated cancer research centers are examples of others. There is a lot of anecdotal and other information floating around; as we like to say, "Dr. Google is not your friend."
This is a great place to ask questions.
Please keep us posted as you move forward.
 

@MyTwinsNana Do you have any more specific information about the EGFR mutation she has? Different mutations have very different treatment paths. I have two mutations-- S768i and L8585R, on exons 20 and 21. One of these is not well-researched, so I take care when learning about treatment options. I would advise a big deep breath until you know the specific sequencing. 
Medically planning for her death feels premature to me. I have a friend who lived with Stage 4 lung cancer for 16+ years, with good quality of life in between some treatments. My husband and I are pretty proactive when it comes to wills, medical power of attorney, and advance directives. We reviewed all that when I got diagnosed, then we put the focus on living well: bicycling trips, hiking, etc. (FYI, I'm 67 and very active-- distance cycling, etc.) 
Once you know your mother's mutations and hear about treatment options, the palliative care piece becomes important. In the spirit of being an effective advocate, you and/or your mother could see who is on the palliative care team, read up on them and the process of getting in to see them, how the the referral wait usually is, etc. You could probably do this all online. If you call, it is perfectly appropriate to say you are doing preliminary research and plan to work closely with her doctor, blah blah blah.
Sometimes it takes some time to get that hooked up, but until you know the details of treatment, there's not really any point-- there wouldn't be anything to talk about. 
Please find some support for yourself. You cannot be responsible for your mother's care at a distance. This cancer is hard. You, too, deserve to live richly and fully as you cope with your mother's situation. Because the people around you are right there, your relationships seem like a foundational part of living well. It's hard to do that without taking care of yourself. Coping with cancer grief is really, really important, and your own counselor can support *you* directly. I see someone weekly and it has made it possible for me to deal with deep feelings and then go back to my family without being a total Debbie Downer.
We patients all learn to balance the every-present awareness of our cancer with the philosophy of living well; you can do it too, no matter how impossible it seems right now. 
I will keep you in my thoughts.

Welcome here, and while it stinks that you have to seek out a lung cancer support network, this is a great one. 
I'm three+ years into NSCLC, with mutations that do not respond to immunotherapy, so I'm afraid I can't offer much specific feedback. I just wanted to welcome you and remind you of the value of deep breaths in the face of scary changes.  

@gaylepc  Welcome here! In terms of learning, there is a lot to learn. Lungevity is a great place to get a foundation. I'd recommend starting here.
I advise two other things. One, if (when) you feel overwhelmed with all the information, stop. Take a break of at least a couple of hours to settle your responses and questions. Please remember: lung cancer research is booming and information changes rapidly. 
Two, read only reputable sites. Lungevity is one excellent source. Mayo Clinic, Cleveland Clinic, sites of federally designated cancer research centers are examples of others. There is a lot of anecdotal and other information floating around; as we like to say, "Dr. Google is not your friend."
This is a great place to ask questions.
Please keep us posted as you move forward.
 

It's been quiet here lately. I just wanted to share that my latest chest CT is stable, with no sign of nodules or new metastases. Yay Tagrisso!
I knew it would be a boring oncologist follow-up visit, so I planned to talk about stress and its impact on recurrence. I was volunteering in a high-stress environment, with traumatized kids. The doc told me that many of her patients who incorporated dietary changes, took up meditation, and exercised also did as much as they could to avoid stress, even going as far as changing jobs. She said the most important thing was to focus on doing what brings joy. In her eyes, my volunteer work seemed dark and difficult. She didn't tell me what to do, but she repeated the joy thing about 8 million times. While I regretfully stopped the volunteer job, I've found I'm really enjoying focusing on joy. 
I have done a little research on PTS (post-traumatic stress) and cancer survivors. One study reports on a a cellular mechanism that, under the right circumstances, can trigger a cascade effect that may result in reactivation of cancer cells. (Researchers emphasized this was one of what they think may be multiple pathways.)  Note that PTS is not the same thing as PTSD. And, the news about PTS is not all bad. According to a psycho-oncology report in Psychiatric Times, "post-cancer trauma symptoms may coexist with finding meaning, strengthened relationships, enhanced spirituality, bolstered sense of personal strength, and clearer life priorities." 
Hope you are all well.
 
 

@gaylepc  Welcome here! In terms of learning, there is a lot to learn. Lungevity is a great place to get a foundation. I'd recommend starting here.
I advise two other things. One, if (when) you feel overwhelmed with all the information, stop. Take a break of at least a couple of hours to settle your responses and questions. Please remember: lung cancer research is booming and information changes rapidly. 
Two, read only reputable sites. Lungevity is one excellent source. Mayo Clinic, Cleveland Clinic, sites of federally designated cancer research centers are examples of others. There is a lot of anecdotal and other information floating around; as we like to say, "Dr. Google is not your friend."
This is a great place to ask questions.
Please keep us posted as you move forward.
 

Great news. Here's hoping your recovery is uneventful and swift. 

I've been away from the forums since March, when my 91 year-old mom tested positive for Covid. Her care during the acute illness and her recovery became my focus until the end of May, when my husband and I began three weeks of travel: NYC, then 2 weeks bicycling along the Danube with extra days in Prague and Budapest. It was an extraordinary experience, even in the moment when lung cancer crashed the party. No, nothing bad, just one of the occasional spasms of grief that seem to be part of my experience. (I wrote about it here.) 
Toward the end of the trip, one of our group came down with a cold. The day after we landed at our airport, I had chills and a runny nose. The day after that, I had a positive Covid test. It was mild-- the doctor remarked that I didn't even seem sick. I had a small fever for five days, isolated from the rest of the household, and have emerged with a small cough. Thank goodness for vaccinations. 
I also had my quarterly scans last week. Everything is stable!  🎉  Now it's back to living life which, once this cough is quiet, will involve a lot of bicycling. 
It's nice to be back! 

Hi Chad, 
You've waited a long time. I wish you all the best on Monday. 
Please keep us posted.
Karen

Hi Chad, 
You've waited a long time. I wish you all the best on Monday. 
Please keep us posted.
Karen

Hi Michael, 
Welcome aboard. I'm an EGFR person myself, taking a different targeted therapy than you for almost a year. FWIW, my short term memory is full of holes. I hear this from a lot of folks taking the same med.  
I figure it's better than the alternative....
Karen

Thanks Lou and Karen! It is so demoralizing to get Covid into the home but so far I and dad remain negative, praying it will stay this way so we can have a less miserable rest of our vacation. Kind of stuck here in California since tickets to Canada are always exorbitant and I need to pay thousands to go home early. My kid seems better, hope this continues. I keep blaming myself allowing my kid to play in the pool while it was bursting full with kids. We kept masking everywhere indoors but that was not enough with crowded outdoors. My bad and my feelings of guilt is heavy. He got a nasty ear infection from this miserable virus.
Thanks Karen for the superlative links, right to the point. Amazed how wrong drugs.com info and the like are. I consulted my cancer centre today and they said it is OK to take both & informally pharmacist said if side effects become bothersome, one can consider taking Tag one day on, one off while on Paxlovid. 
 
Take care all, so many are getting covid again, darn this Summer wave, like an endless nightmare this virus.

Lily, 
Deep breaths, my friend. 
First, you can check for interactions here, a wonderful site from the University of Liverpool, or here, another UK university health center. The bottom line: you're OK with Paxlovid and Tag. 
Second, the new strain of Covid seems to be rampant. I picked up Covid in June, on a trip to Austria. I could really blame myself, but someone on my trip had what seemed to be a cold. Who could imagine it might be Covid? This is just to say, there's no telling any more where or how Covid exists. It just is. 
The doctor prescribed Netflix and fluids, as I didn't seem all that sick. She reminded me that Paxlovid has its own side effects. I have had Covid twice and have not used it either time. My mom, 91, had Covid in March. Her age meant she had a hard, hard illness. But we got through it, and even though I was her chief caregiver, I didn't get sick. I stocked the refrigerator with all kinds of fluids. It's important to not just drink water, as too much can screw up your electrolytes. My mother did that and we still have bottles of electrolyte replacement in the pantry. 
I had five days of fatigue, some pretty surprising muscle pain, and what seemed like a cold. My asthma acted up, but I dealt with that the way I usually deal with asthma. Then I went for a short bike ride. 😁 
You will get though this, even if everybody becomes ill. I don't know if you flew and if you did, how you would feel about traveling home with someone who has Covid. You might consider heading home. If that doesn't sit right with you and the hotel is not meeting your current needs, you may be more comfortable in larger quarters-- have you considered moving to an Airbnb or a suite-style hotel with a small living room and a separate bedroom area? I know, who needs that complication, but if it eases some emotional strain, that's a valid reason to make the change. I know I have to remind myself, there's all kinds of ways to take care of myself. Too often, I give short shrift to caring for myself emotionally. 
I'm sorry about your dad. I hope hospice is able to provide comfort to all of you. 
You can do this. 
Karen

Well, dangit. Just what you were NOT hoping for. And yet, I have to share my very unofficial & completely anecdotal observation that surgical interventions seem to provide longterm excellent cancer-free time. Celebrate? Yeah, no thanks. Who wants to celebrate surgery? But celebrate the possibility of a longterm stable physical condition? You betcha! 
I'm sure you're starting to investigate at-home support services. Maybe ask on this forum what kind of help people found they needed after their lobe removal? That could help you prepare for afterwards. 
Keep us posted!
 

Scan results are in and no new growth or changes in the remaining mass. Such great news when you know your life depends on it. Now I begin again living through the next three months with my goal remaining for no changes with the tumor and no further growth with my next scan. This Has been quite the journey for the past 2 1/2 years. My life expectancy was projected for 3 - 6 months and yet I continue to live and make more memories with my family. Feeling so blessed with every day that passes.  I continue to work from home. So fortunate that my job allows this. My goals this year are to attend a vacation week at the cape withy family. Eat fried clams while at the cape. Watch all my grandchildren fly kites I purchased for them while at the cape and to ring in New years with my family at the Coventry house we rent out for New Years. Any time I can get with my family becomes memory time for all of us. The grandchildren have grown so fast. It's been over a year now since the last two grandbabies were born. The babies bring us lots of laughs at Sunday dinners. Such blessings. I can't believe we have been living in the new house for over a year now. I do believe downsizing added a little more time to my life by making it easier. I am enjoying the peaceful surroundings the new house has to offer as well. Forward I go while it is still possible making as many memories as I can with my family I love so much.

@Papa102222, welcome to this forum. I admire what a dedicated guardian you are to your youngsters and I'm glad you have found a treatment plan you feel good about. 
Many of us start the treatment process by talking with other survivors. Then, as they progress through treatment, they find they have a little more breathing room to keep learning. Lung cancer is so complex that many of us find some knowledge helps us understand our situations and make informed decisions. I hope you'll spend some more time reading about this disease we all share. I especially recommend the Understanding Your Diagnosis section of the Lungevity site. 
Best wishes on your treatment. Keep us posted!

You are more than welcome. (Go get 'em!)

You are more than welcome. (Go get 'em!)

I'm kind of shocked at the pulmonologist's lack of follow-up. I'm with Lou on considering finding a new one. 
The lesions would concern me. Can you get in to the oncologist any sooner? That would be my inclination. 
 

Affenage,
I'm glad you found us. Radiation was the thing that disintegrated my lung tumor, so while I understand your concerns and have fleeting worries about radiation myself, I also know it helps so many LC people in different ways.
It's generally good to consult with a lung cancer specialist because lung cancer is so complex. I know folks from communities with only general oncology services will do a consult with a lung cancer person, who can devise a treatment plan that can be delivered at the cancer center closer to home. The diagnostic process can take a while with LC. Lungevity has some good basic info about the process from early diagnosis on. That may help you in deciding on where to seek initial diagnosis. I wish you luck, and patience. I don't know what the diagnostic process is for anything besides lung cancer, and I found waiting for the definitive diagnosis so difficult.
In terms of support during treatment, I have had help with a recent family medical emergency with Care.com. Locally here there is also something called Home Instead. Maybe researching options for in-home care near you would help ease that worry.  

Affenage,
I'm glad you found us. Radiation was the thing that disintegrated my lung tumor, so while I understand your concerns and have fleeting worries about radiation myself, I also know it helps so many LC people in different ways.
It's generally good to consult with a lung cancer specialist because lung cancer is so complex. I know folks from communities with only general oncology services will do a consult with a lung cancer person, who can devise a treatment plan that can be delivered at the cancer center closer to home. The diagnostic process can take a while with LC. Lungevity has some good basic info about the process from early diagnosis on. That may help you in deciding on where to seek initial diagnosis. I wish you luck, and patience. I don't know what the diagnostic process is for anything besides lung cancer, and I found waiting for the definitive diagnosis so difficult.
In terms of support during treatment, I have had help with a recent family medical emergency with Care.com. Locally here there is also something called Home Instead. Maybe researching options for in-home care near you would help ease that worry.  

@Scruboak  ❤️

@Sue BB I don’t know many folks with the KRAS mutation. I know there’s a Facebook group for it, but that’s about all I know.  Brain mets are scary; it sounds like Mayo was aggressive in addressing them. I’ve only had one and gamma knife was a miracle. I, too, started a targeted therapy afterwards and it’s kept me stable for more than a year. I’m very grateful, and so glad you are doing better. I hope you are better able to tolerate the treatment as time passes. 

@Livin Life Thanks so much. Yes, Mom is better. It was a long haul, but she’s back walking and building endurance. Hope all is well with you, too.