Karen_L

Hi Jeff,
Your mom has had a rough road so far; I'm sorry to hear that. The arm swelling and headache are important info for the doc to know; the cancer center where your mom is being treated should have a palliative care team, which can help with pain and side effects.
I wish I had better news about the esophagitis, but after I finished radiation, I was told things would get worse for about 2 weeks after the final treatment, and then things would s l o w l y improve. They were right. Things got worse. But they *did* get better. The key is to stay in touch with the medical team. The adage, "The squeaky wheel gets the grease," is important to remember. We tend to be too dang nice for our own good. Your mom had the right to not suffer, you have the right to make sure she isn't, and they have the responsibility to help her. The key is to be assertive but not aggressive. 
Best of luck , and please keep us posted,
Karen

I have a different collection of mutations and metastases, so can’t offer experiences that would relate to your situation. But I understand the shock and complex feelings that arise with progression.
Your oncologist may be out of town, but they must have a colleague covering for them, or a nurse practitioner or nurse. I would call and ask to speak to them. Even if you preface your request with the statement that you don’t expect solutions, you just need to be talked down…. (We’re all just too damned nice for our own good— we need and deserve this support!)
Absent that possibility, Lungevity and Go2 both have patient connection lines, which may be able to connect you to folks who share your experience. @Tom Galli is this something Kristi could help with? 
What I would tell you is, get your mind firmly in the moment. Take some slow, deep breaths. Trust that the next step will come to you, even via another response here. You will make your way through this, one step at a time. Right now, don’t let your brain tip you into panic. You can do this. 
Sending strength.
Karen

I have a different collection of mutations and metastases, so can’t offer experiences that would relate to your situation. But I understand the shock and complex feelings that arise with progression.
Your oncologist may be out of town, but they must have a colleague covering for them, or a nurse practitioner or nurse. I would call and ask to speak to them. Even if you preface your request with the statement that you don’t expect solutions, you just need to be talked down…. (We’re all just too damned nice for our own good— we need and deserve this support!)
Absent that possibility, Lungevity and Go2 both have patient connection lines, which may be able to connect you to folks who share your experience. @Tom Galli is this something Kristi could help with? 
What I would tell you is, get your mind firmly in the moment. Take some slow, deep breaths. Trust that the next step will come to you, even via another response here. You will make your way through this, one step at a time. Right now, don’t let your brain tip you into panic. You can do this. 
Sending strength.
Karen

Jacob,
It looks like we’ve strayed into territory a bit afield from the immediate topic of you and your mom. It may give you a feel for how interesting research becomes to many of us— after we’ve gotten through diagnosis, treatment, and the accompanying emotional storms. 
Please keep us posted about what’s happening with you and your mom. We’ll be thinking of you both as all the appointments begin. 
Karen

Jacob,
It looks like we’ve strayed into territory a bit afield from the immediate topic of you and your mom. It may give you a feel for how interesting research becomes to many of us— after we’ve gotten through diagnosis, treatment, and the accompanying emotional storms. 
Please keep us posted about what’s happening with you and your mom. We’ll be thinking of you both as all the appointments begin. 
Karen

Jacob,
It looks like we’ve strayed into territory a bit afield from the immediate topic of you and your mom. It may give you a feel for how interesting research becomes to many of us— after we’ve gotten through diagnosis, treatment, and the accompanying emotional storms. 
Please keep us posted about what’s happening with you and your mom. We’ll be thinking of you both as all the appointments begin. 
Karen

Jacob, take care about the things you read about diet and all kinds of other stuff. There’s a lot, and there’s a lot of hoo-ha too. The parting words from the oncology dietician were, “Don’t believe the bullsh—.” 
Credible sources include peer-reviewed articles in research-oriented journals and websites, sites like Lungevity and Go2, sites of major cancer centers. 
I find Cancer  Research UK to have comprehensive articles. This piece on sugar gets into some interesting nuances about sugar and cancer. Most interesting is the video that appears part of the way down the page, called "Ten Persistent Myths About Cancer, Debunked." 
Your mom is probably delighted and grateful that you are with her, but an important part of being a lung cancer person is becoming active in your own care. You might talk with her about what, exactly, she wants and/or needs from you right now. If that’s to overhaul her diet, then great. But if she'd rather just watch Netflix with you, then try to roll with it. 
Which is not to say, don't do anything. Perhaps the search right now would be for a pain management specialist. You'll hear many people talk about their palliative care team, which is a person or group of people who specialize in helping people cope with pain, side effects of medication, etc. The PCP ought to be able to recommend a starting point.
Also, you might check out the caregiver forum group here. 
Hang in.
Karen
 

Jacob, take care about the things you read about diet and all kinds of other stuff. There’s a lot, and there’s a lot of hoo-ha too. The parting words from the oncology dietician were, “Don’t believe the bullsh—.” 
Credible sources include peer-reviewed articles in research-oriented journals and websites, sites like Lungevity and Go2, sites of major cancer centers. 
I find Cancer  Research UK to have comprehensive articles. This piece on sugar gets into some interesting nuances about sugar and cancer. Most interesting is the video that appears part of the way down the page, called "Ten Persistent Myths About Cancer, Debunked." 
Your mom is probably delighted and grateful that you are with her, but an important part of being a lung cancer person is becoming active in your own care. You might talk with her about what, exactly, she wants and/or needs from you right now. If that’s to overhaul her diet, then great. But if she'd rather just watch Netflix with you, then try to roll with it. 
Which is not to say, don't do anything. Perhaps the search right now would be for a pain management specialist. You'll hear many people talk about their palliative care team, which is a person or group of people who specialize in helping people cope with pain, side effects of medication, etc. The PCP ought to be able to recommend a starting point.
Also, you might check out the caregiver forum group here. 
Hang in.
Karen
 

Jacob! I'm glad you've found us. 
You've gotten so much great information already. I want to go back to what Lily said early in her response and give it a big emphasis. It's essential that you find and work with a lung cancer specialist. The changes in the field are simply coming too fast for a general oncologist to keep up. 
I was diagnosed three years ago, when I was 63. The first year was rugged, but I've been stable for more than a year, and living a pretty wonderful life. (I'm getting ready for two weeks in Italy! Woot!) 
My only symptom was a stupid cough, which I thought was asthma. I had an innocent chest Xray to see if I had pneumonia, on February 8. Treatment started on April 1, 7 weeks later (it still cracks me up that I started treatment on April Fools Day.) At one point, I said something to one of the team about speeding up the process. He gave me a sympathetic look and said, "Believe it or not, we are moving at warp speed." 
So, please try to remember that It takes time, a lot of time, for the docs to get the right information to craft an appropriate treatment plan.
Waiting is agonizing. Try to keep your mind in the present moment. Take slow, deep breaths to relieve a little stress. 
We'll be glad to meet your mom whenever she comes. 
 

Jacob! I'm glad you've found us. 
You've gotten so much great information already. I want to go back to what Lily said early in her response and give it a big emphasis. It's essential that you find and work with a lung cancer specialist. The changes in the field are simply coming too fast for a general oncologist to keep up. 
I was diagnosed three years ago, when I was 63. The first year was rugged, but I've been stable for more than a year, and living a pretty wonderful life. (I'm getting ready for two weeks in Italy! Woot!) 
My only symptom was a stupid cough, which I thought was asthma. I had an innocent chest Xray to see if I had pneumonia, on February 8. Treatment started on April 1, 7 weeks later (it still cracks me up that I started treatment on April Fools Day.) At one point, I said something to one of the team about speeding up the process. He gave me a sympathetic look and said, "Believe it or not, we are moving at warp speed." 
So, please try to remember that It takes time, a lot of time, for the docs to get the right information to craft an appropriate treatment plan.
Waiting is agonizing. Try to keep your mind in the present moment. Take slow, deep breaths to relieve a little stress. 
We'll be glad to meet your mom whenever she comes. 
 

Jacob! I'm glad you've found us. 
You've gotten so much great information already. I want to go back to what Lily said early in her response and give it a big emphasis. It's essential that you find and work with a lung cancer specialist. The changes in the field are simply coming too fast for a general oncologist to keep up. 
I was diagnosed three years ago, when I was 63. The first year was rugged, but I've been stable for more than a year, and living a pretty wonderful life. (I'm getting ready for two weeks in Italy! Woot!) 
My only symptom was a stupid cough, which I thought was asthma. I had an innocent chest Xray to see if I had pneumonia, on February 8. Treatment started on April 1, 7 weeks later (it still cracks me up that I started treatment on April Fools Day.) At one point, I said something to one of the team about speeding up the process. He gave me a sympathetic look and said, "Believe it or not, we are moving at warp speed." 
So, please try to remember that It takes time, a lot of time, for the docs to get the right information to craft an appropriate treatment plan.
Waiting is agonizing. Try to keep your mind in the present moment. Take slow, deep breaths to relieve a little stress. 
We'll be glad to meet your mom whenever she comes. 
 

Erin, 
Your head must be spinning.
As I recall, 4 mm is typically the action point for lung nodules, i.e., biopsy. Smaller than that, they tend to come and go, at least in my lungs. A biopsy is the only surefire way to know if a nodule is trouble. Sounds like your oncology doc is doing the right stuff by reaching out to a lung person.
Just try to take some slow, deep breaths. This waiting period is killer. 
Karen
 

Lily, I was just reading that one of the effects of Tag is that red cell and neutrophil counts drop. I spent a little time looking this up because my most recent blood test got flagged for low red cells. No wonder one of the side effects of Tag can be fatigue. Oh well....

When I’ve asked her, my oncologist  says low neutrophils seem to come with the territory of lung cancer. <shrug>
I can’t remember if you had chemo; my pulmonologist says chemo messes up the immune system in mysterious and unpredictable ways. Yay?

Lily, I was just reading that one of the effects of Tag is that red cell and neutrophil counts drop. I spent a little time looking this up because my most recent blood test got flagged for low red cells. No wonder one of the side effects of Tag can be fatigue. Oh well....

When I’ve asked her, my oncologist  says low neutrophils seem to come with the territory of lung cancer. <shrug>
I can’t remember if you had chemo; my pulmonologist says chemo messes up the immune system in mysterious and unpredictable ways. Yay?

Hi CheRub,
Your doctor's treatment plan(s) depend(s) on the specific EGFR mutation(s) you have. You can read about biomarker testing here.
Yes, the chemo will kill cancer cells. But it probably won't get all the un-seeable "seed" cells that are floating around. Unfortunately, this notion of seed cells currently seems to be a real puzzle for researchers.
Tagrisso is a TKI (tyrosine kinase inhibitor), a targeted therapy, not a form of chemo. By that I mean, it is targeted to interrupt the cellular action of the particular mutation that has been found in your lung tissue.
Sounds like the oncologist is suggesting a one-two punch to get you the best odds going forward. It will be interesting to hear what others docs say.
Please keep us posted.
 

Erin, 
Your head must be spinning.
As I recall, 4 mm is typically the action point for lung nodules, i.e., biopsy. Smaller than that, they tend to come and go, at least in my lungs. A biopsy is the only surefire way to know if a nodule is trouble. Sounds like your oncology doc is doing the right stuff by reaching out to a lung person.
Just try to take some slow, deep breaths. This waiting period is killer. 
Karen
 

@Izzy, I have been thinking about Justin all day. I am so, so sorry for your loss. He was a joy to know here; in the physical world, his spirit must have been amazing. Truth be told, I am also relieved for him that the suffering is over.  He suffered so much, and was so gracious and kind even as he dealt with his own challenges. I will keep you in my thoughts over the coming days and weeks. I wish you peace. 
Karen

@Izzy, I have been thinking about Justin all day. I am so, so sorry for your loss. He was a joy to know here; in the physical world, his spirit must have been amazing. Truth be told, I am also relieved for him that the suffering is over.  He suffered so much, and was so gracious and kind even as he dealt with his own challenges. I will keep you in my thoughts over the coming days and weeks. I wish you peace. 
Karen

Justin worked so hard to be well, and you were such a support to him, Izzy. You are in my prayers. 
Karen

Justin worked so hard to be well, and you were such a support to him, Izzy. You are in my prayers. 
Karen

Justin worked so hard to be well, and you were such a support to him, Izzy. You are in my prayers. 
Karen

Justin worked so hard to be well, and you were such a support to him, Izzy. You are in my prayers. 
Karen

Hi Dora, 
This is all scary stuff, isn’t it? It’s ironic that, on a lung cancer forum, you hear so many people talk about taking deep breaths. But slow, deep-as-you can breaths do have a positive physiological impact on anxiety.
You’re at the point of needing a diagnosis about initial testing. That means more testing, for which your doctor is suggesting biopsy or waiting and watching. Because you’ve come to our discussion board, it seems that you’d like to rule out or diagnose lung cancer. 

As you consider your options, it’s really good to find doctors who specialize in lung cancer and other issues of the lung. The Mayo Clinic lung program, a federally designated cancer center, has centers in Phoenix and Scottsdale, which is about an hour from where you list in your information. Many of us travel long, long distances for diagnosis and treatment; don’t let an hour prevent you from acting. 
Here’s information about the lung program. https://www.mayoclinic.org/departments-centers/lung-cancer-program/home/orc-20474481
Here is information about testing: https://www.mayoclinic.org/departments-centers/lung-cancer-program/sections/tests-procedures/orc-20474595
I’m with Lily on the importance of catching lung cancer early. I’ve had two biopsy-getting procedures, which yielded tissue that enabled a precise diagnosis and targeted treatment. It was an outpatient procedure; I some discomfort for several days, but it was no big deal. 
Keep us posted.
Karen