Karen_L

I'm sorry you're dealing with so much right now. Changing any doctor is a huge thing to get used to; to have to leave an oncologist you trust...oof!
I know everybody's medical coverage is different. Good for you for calling about the scans. Now, why not call the new person's office directly for an appointment? There's already enough agonized waiting in our lives; anything I can act on, I do, in person or on the phone whenever possible. I find it helps build a relationship with the people I hope will help me. Politely, of course. And in good cheer. And I will call a couple of times if necessary. One thing I might do is thank the person I've called and say, "I hope you don't mind if I check back to see if things have changed." (Sometimes I thank them for the information and tell them I'll check back. Or, I ask to be put on a cancellation list.) 
I wanted also to comment on your statement that most Stage 4 lung cancer folks get months to live. This is certainly an anxiety-provoking thought! In the LC community, we say that numbers about survival are to be ignored. They are not prescriptive of "how long you get." Instead, the statistics describe what has happened in a previous five year period. The stats are from the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) Program. Their most recent annual report to the nation "includes long-term trends (since 2001) and short-term trends with the most recent five years of data (2014-2018 for incidence and 2015-2019 for mortality)." I hope you will take note of the dates.
I cannot count the number of new FDA-approved lung cancer treatments that have emerged in the five years since the most current annual report, nor the number of new clinical trials that are in progress. 
In addition, it's important to note: these statistics do not reflect what's happening with each specific oncogenic (cancer-causing) mutation: they do not  differentiate between type of lung cancer (adenocarcinoma, squamous cell carcinoma, small cell carcinoma.)  
I have friends with Stage 4 lung cancer who have survived for more than 10 years, with quality of life they feel glad about. Their mantra: keep going until the next treatment option comes out. 
You're obviously strong-- sciatica pain is no joke, and you've been living with it for a while! I hope you will take heart, a little, from what you find here, and gain even a little more strength. 
Keep us posted. 
 
 
 

No worries, @laurie2020. I wanted to be sure the stats weren’t adding to your own worries. Hang in,
Karen

I'm sorry you're dealing with so much right now. Changing any doctor is a huge thing to get used to; to have to leave an oncologist you trust...oof!
I know everybody's medical coverage is different. Good for you for calling about the scans. Now, why not call the new person's office directly for an appointment? There's already enough agonized waiting in our lives; anything I can act on, I do, in person or on the phone whenever possible. I find it helps build a relationship with the people I hope will help me. Politely, of course. And in good cheer. And I will call a couple of times if necessary. One thing I might do is thank the person I've called and say, "I hope you don't mind if I check back to see if things have changed." (Sometimes I thank them for the information and tell them I'll check back. Or, I ask to be put on a cancellation list.) 
I wanted also to comment on your statement that most Stage 4 lung cancer folks get months to live. This is certainly an anxiety-provoking thought! In the LC community, we say that numbers about survival are to be ignored. They are not prescriptive of "how long you get." Instead, the statistics describe what has happened in a previous five year period. The stats are from the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) Program. Their most recent annual report to the nation "includes long-term trends (since 2001) and short-term trends with the most recent five years of data (2014-2018 for incidence and 2015-2019 for mortality)." I hope you will take note of the dates.
I cannot count the number of new FDA-approved lung cancer treatments that have emerged in the five years since the most current annual report, nor the number of new clinical trials that are in progress. 
In addition, it's important to note: these statistics do not reflect what's happening with each specific oncogenic (cancer-causing) mutation: they do not  differentiate between type of lung cancer (adenocarcinoma, squamous cell carcinoma, small cell carcinoma.)  
I have friends with Stage 4 lung cancer who have survived for more than 10 years, with quality of life they feel glad about. Their mantra: keep going until the next treatment option comes out. 
You're obviously strong-- sciatica pain is no joke, and you've been living with it for a while! I hope you will take heart, a little, from what you find here, and gain even a little more strength. 
Keep us posted. 
 
 
 

I'm back to Karen's suggestions then of getting in touch with your team about other causes though also recommendations that can help....

@Cathy Price I wouldn't know if it's due to Keytruda. I have read that there can be effects from chemo even after the treatment is done. Did you have a baseline MRI during your diagnosis process? 
I'd suggest calling and seeing what your team thinks.They'd probably have suggestions about how you can deal with the headaches. And, given that lung cancer likes to travel to other parts of the body, headaches are important information for them to have.
 

@Cathy Price I wouldn't know if it's due to Keytruda. I have read that there can be effects from chemo even after the treatment is done. Did you have a baseline MRI during your diagnosis process? 
I'd suggest calling and seeing what your team thinks.They'd probably have suggestions about how you can deal with the headaches. And, given that lung cancer likes to travel to other parts of the body, headaches are important information for them to have.
 

I recently went back and re-read my genetic studies. It gave me great food for thought. That report was extensive, i.e., pages and pages, with information about different mutations and the potential treatment paths for each one. 
All of my test results are available to me online, through a program called MyChart. I download and keep copies of all tests and notes from doctor visits. 
The more information we have about our individual situations, the better able we are to advocate for ourselves. I hope you'll call your doctor's office and ask for access to all those results. 
Keep us posted.

I recently went back and re-read my genetic studies. It gave me great food for thought. That report was extensive, i.e., pages and pages, with information about different mutations and the potential treatment paths for each one. 
All of my test results are available to me online, through a program called MyChart. I download and keep copies of all tests and notes from doctor visits. 
The more information we have about our individual situations, the better able we are to advocate for ourselves. I hope you'll call your doctor's office and ask for access to all those results. 
Keep us posted.

@jack14, I recently read a report that some Aussie researchers have had some promising results in a study looking at AI use. I'm sorry I can't direct you to that URL-- it was early stages of research, so I just mentally filed it for the future. 

@edivebuddy I thought I responded, but it's not showing up....Maybe a bug?
Anyway, sorry if I gave the impression that I try to interpret what I see. I'd never even suggest doing that. I just genuinely like seeing the body from the inside. I especially find the brain fascinating-- my oncology radiologist knows I like to geek out on the images, and I learn a lot. Before the brain met, we'd look at the lung scans because she thought it was "motivating" for patients to see the effects of radiotherapy treatment. 
Re: the PET: I'd never had a PET scan before and after hearing (and reading about) the test, was interested to see how it would be different from an x-ray or CT.  Because of other tests and conversations with docs, I knew the location of the mass in relation to the heart. When I looked at the screen, the tumor was so...obvious. Then it was easy to deduce what the other things, i.e., lymph nodes, were. 
I completely agree @edivebuddy. Look if you're curious, but leave the interpretation to the experts. 

@Livin Life I'm happy for you-- to have such an extensive visit with a doctor is a wonderful thing. My pulmonologist is a delight in that way; my former pulmo was almost a friend. Maybe it's that particular specialty that is so...humane?
I understand your desire to get these pesky medical appointments out of your life. At the same time, when I was offered a one year repeat of brain MRI (in lieu of 6 months) my instantaneous response was NO. Quarterly CT scans are also a pain, and the contrast gives me pause, but I plan to immediately and aggressively address anything that shows, so I want that information as soon as it's visible. As you settle back into your work and life routines without the worry and medical testing/appointments, I hope you'll reconsider your desire to postpone scans and tests. 
I also wonder what the oncologist thinks about the pulmonologist's views. Slow-growing adenocarcinoma, arrested early, gives you a shot at a much longer life. You could do this via a vide consult, making sure the pulmonology office shares files well in advance of the appointment. I wonder if a biopsy of the areas of concern would be appropriate? 
I am glad you are resting more easily in your thinking. Please keep us posted!
 
 

I recently went back and re-read my genetic studies. It gave me great food for thought. That report was extensive, i.e., pages and pages, with information about different mutations and the potential treatment paths for each one. 
All of my test results are available to me online, through a program called MyChart. I download and keep copies of all tests and notes from doctor visits. 
The more information we have about our individual situations, the better able we are to advocate for ourselves. I hope you'll call your doctor's office and ask for access to all those results. 
Keep us posted.

I try to interpret the images (usually do a poor job) but that's just the way I am wired! I rely on the text, which has been much more successful. 
The main reason is I don't like surprises. So far I haven't been surprised during an onc visit yet and the visits are more productive.
My wife is 100% the opposite! She has a pretty short neck to be an ostrich! But 32 years of marriage must prove opposites do attract?
Tom

I did not think that at all @Karen_L. I was just putting up a disclaimer before I made it sound easy.

@edivebuddy I thought I responded, but it's not showing up....Maybe a bug?
Anyway, sorry if I gave the impression that I try to interpret what I see. I'd never even suggest doing that. I just genuinely like seeing the body from the inside. I especially find the brain fascinating-- my oncology radiologist knows I like to geek out on the images, and I learn a lot. Before the brain met, we'd look at the lung scans because she thought it was "motivating" for patients to see the effects of radiotherapy treatment. 
Re: the PET: I'd never had a PET scan before and after hearing (and reading about) the test, was interested to see how it would be different from an x-ray or CT.  Because of other tests and conversations with docs, I knew the location of the mass in relation to the heart. When I looked at the screen, the tumor was so...obvious. Then it was easy to deduce what the other things, i.e., lymph nodes, were. 
I completely agree @edivebuddy. Look if you're curious, but leave the interpretation to the experts. 

@TJM No wonder you’ve gone numb— you have a little going on! I fully support pre-scan travel. Having contracted Covid after my own shipboard experience in June, I’m hesitant to try another one. But we still a wonderful trip.
My lymph nodes lit up and waved hello from the screen after my PET scan. (They let me look; if you promise not to ask them anything, the less busy places seemed keen on having me come in for a peek.) I think waiting is an invitation to disaster. Oddly, I’ve had only one PET scan since diagnosis. I do, however, have frequent flier miles at the MRI & CT machines. Sometimes I’ve heard that insurance can be a factor in which kind of test a person gets…?
Keep us posted!
Karen
. 
 

@TJM No wonder you’ve gone numb— you have a little going on! I fully support pre-scan travel. Having contracted Covid after my own shipboard experience in June, I’m hesitant to try another one. But we still a wonderful trip.
My lymph nodes lit up and waved hello from the screen after my PET scan. (They let me look; if you promise not to ask them anything, the less busy places seemed keen on having me come in for a peek.) I think waiting is an invitation to disaster. Oddly, I’ve had only one PET scan since diagnosis. I do, however, have frequent flier miles at the MRI & CT machines. Sometimes I’ve heard that insurance can be a factor in which kind of test a person gets…?
Keep us posted!
Karen
. 
 

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

No matter what happens, you will feel frightened.
But, and please hear this:  if we can get through it, you can too.   
As you learn more, you will be able better to make sure you get the best care for your situation. 
I agree--I would want a referral to an oncologist who specializes in lung cancer. I suggest you call the Lungevity Helpline for assistance, ASAP. 844-360-5864
I, too, would want a CT scan with contrast and a biopsy of those lymph nodes. That was the only tissue my doctor could get-- the tumor was too hard to reach-- and that tissue gave us the info necessary. 
 

There is something very satisfying about the thought of those stupid tumors being reduced to ask. I've had targeted radiation to lumph nodes, lung tumor, and brain met. I wish surgery had been an option, but 🤷‍♀️, what're ya gonna do? 
Hang in. I like the article-- good for you for sticking to peer-reviewed research

I know how anxious you have been, and the post that follows includes details and questions that I think you-- or your husband-- would be wise to investigate.
I'm surprised that she does not expect she will find anything "interesting?" A PET response in a mass is a definite concern, i.e., "interesting". Do you have access to the direct report of the PET? The SUV number would be interesting. That's the measurement of dye uptake.  It may be that she is talking about the lymph nodes? It would have been interesting to hear ger thoughts on what she would find that would qualify as "interesting."
I hope she is planning to be aggressive in pursuit of future procedures. The CT guided biopsy sounds good-- when will that happen? I strongly hope that the future procedures will include a liquid biopsy. (Many lung cancer specialists now routinely do both a tissue and a liquid biopsy-- the liquid biopsy yields faster results, where a tissue biopsy takes weeks.) 
On this page is information about tissue biopsy, with a good explanation of the Bronchoscophy procedure. 
Deep breaths. You can do this. You will be fine. 
 
 

Great article-- thanks!
Did Marcia mention the FaceBook Exon 20 group? When I spoke with her, she said the group was for Exon 20 insertion and deletion mutations, and since mine is a point mutation, I wasn't able to be a member. Has that changed for your mom? 
When I pushed for afatininb as a first line treatment, the doc was not interested. We went instead for the protocol following the Pacific Study results, presumably for the L858R mutation. Of course, the immunotherapy consolidation almost killed me (literally) but, whaddya gonna do?

Glad you're here!
I was diagnosed during Covid; my family attended meetings via Zoom. You may find it helpful to be a fly on the wall rather than a secondhand learner. 
One of my mutations is S768i. I also have a an Exon 21 mutation, L858R. They seem to carry a 50/50 influence (I forget the language.) I was diagnosed in February of 2021.
Immunology is not effective for any EGFR mutations. 
mycancergenome.org had information about mutations and treatments. The site seems hinky today-- my bookmarks aren't working. But check it out. 
The NCCN algorithms for NSCLC treatment protocols have been informative for me. 
FWIW, subcutaneous Ami takes less time than venous infusion and yields the same results. Not sure if that's an available protocol yet, or whether it is still in trials. It never hurts to ask. 
In a webinar once I asked a top researcher why we heard so little about S768i. He said he was sure somebody was researching it. I haven't done a deep dive into it. Yet. 😃
Please keep us posted.
 
 
 

No matter what happens, you will feel frightened.
But, and please hear this:  if we can get through it, you can too.   
As you learn more, you will be able better to make sure you get the best care for your situation. 
I agree--I would want a referral to an oncologist who specializes in lung cancer. I suggest you call the Lungevity Helpline for assistance, ASAP. 844-360-5864
I, too, would want a CT scan with contrast and a biopsy of those lymph nodes. That was the only tissue my doctor could get-- the tumor was too hard to reach-- and that tissue gave us the info necessary. 
 

One of the top researchers in lung cancer, David Carbone, was at the Ohio State University. I strongly suggest a second opinion ASAP.