Karen_L

@Sallysh,
I'm so sorry to hear you are dealing with this. You are taking positive steps though, so good for you! Keep us posted on trials and next steps. 
Sending strength,
Karen

In researching clinical trials, I came upon some interesting info regarding BMF-219. It has shown great results for leukemia, and now they are looking at trials for lung cancers with any KRAS mutation. This is hopeful for me as I have one of the lesser known types - KRAS A146V.
Here are a couple of links I hope some will find interesting:
https://www.targetedonc.com/view/treatment-with-novel-kras-inhibitor-commences-in-phase-1-1b-study-covalent-10
https://aacrjournals.org/cancerres/article/82/12_Supplement/2665/699885/Abstract-2665-Irreversible-menin-inhibitor-BMF-219
Best to all, June

@Sallysh,
I'm so sorry to hear you are dealing with this. You are taking positive steps though, so good for you! Keep us posted on trials and next steps. 
Sending strength,
Karen

Wonderful news, Lou. It's nice to breathe easy until next year!  hope you're doing something to celebrate.

This is welcome news! I’m glad she’s feeling better and that you have some relief, too. 
 
Karen

My situation was a little different as I underwent chemo radiation that shrunk everything a lot.  My oncologist then wanted me to consider surgery. Radiation was high dose which makes surgery more difficult. I too saw a surgeon who was “willing”. To do the surgery. However the complications, especially because of the high dose radiation,  were daunting. I determined not to do the surgery and started immunotherapy.  The immunotherapy (durvalumab) has failed and in a mere three months the cancer has spread to many lymph nodes and my other lung and liver.  The surgery would not have prevented this. I also have mild copd so can identify with your mother.  I  would agree with The other comments and get more input from lung cancer specialists. 

Sarah85,
I’m sorry to hear your mom—and you— are facing this. One thing she has going for her is her will— she certainly wants to kick this thing to the curb! 

Have the medical providers you’ve spoken with thus far been lung cancer specialists? I’m thinking particularly of the surgeon. Surgeons, in my observations, seem to feel their powers extend to “curing” people with lung cancer— perhaps he is being as optimistic as only a surgeon could be? 
I’d encourage you and your mom to ask the oncologist to bring the case to the tumor board of the center where she received treatment to review next steps. No tumor board? Then I think you are well within your rights to ask your mother to consult a lung cancer specialist in her particular biomarkers to review her case and make recommendations. 
You’ve also got a lot on the line in terms of *your* life in this situation. I worry sometimes that caregivers think they need to (must) make these kinds of sacrifices when it’s possible the actions might not be in everyone’s— including your own— best interests. And, perhaps you’d consider checking in with a counselor about your feelings about all this? The medical center may be able to make a referral to a social worker with oncology experience for a short-term consult. 
I encourage you to be deliberate in this part of the process. And, perhaps check in with the caregiver discussion board here to get their perspectives? 
Hang in,
Karen

Sarah85,
I’m sorry to hear your mom—and you— are facing this. One thing she has going for her is her will— she certainly wants to kick this thing to the curb! 

Have the medical providers you’ve spoken with thus far been lung cancer specialists? I’m thinking particularly of the surgeon. Surgeons, in my observations, seem to feel their powers extend to “curing” people with lung cancer— perhaps he is being as optimistic as only a surgeon could be? 
I’d encourage you and your mom to ask the oncologist to bring the case to the tumor board of the center where she received treatment to review next steps. No tumor board? Then I think you are well within your rights to ask your mother to consult a lung cancer specialist in her particular biomarkers to review her case and make recommendations. 
You’ve also got a lot on the line in terms of *your* life in this situation. I worry sometimes that caregivers think they need to (must) make these kinds of sacrifices when it’s possible the actions might not be in everyone’s— including your own— best interests. And, perhaps you’d consider checking in with a counselor about your feelings about all this? The medical center may be able to make a referral to a social worker with oncology experience for a short-term consult. 
I encourage you to be deliberate in this part of the process. And, perhaps check in with the caregiver discussion board here to get their perspectives? 
Hang in,
Karen

This is welcome news! I’m glad she’s feeling better and that you have some relief, too. 
 
Karen

Hi Marcia,
You're certainly having a time of it. So sorry. The SOB concerns me, too.
While it's interesting and sometimes useful to hear about others' experiences, it's important to work on parallel fronts. Have you consulted with a lung cancer oncologist? Surgeons believe they are saviors, even in lung cancer-- and they can be!-- but they simply don't know enough about the sneakiness of the disease as a lung cancer specialist would. As you are collecting information about others' experiences, please seek out a lung cancer oncologist!
Best of luck, and keep us posted.
K

Bridget,
Never a dull moment, eh? I'm so glad your wife and you made it through those awful hours  after she was discharged. I'm also glad your kitty is celebrating with you. And, I'm in favor of ice cream every day. Happy belated birthday. Here's hoping things ease up for you!
Karen

Hi Julie,
I understand exactly what you mean-- the awareness hits like a ton of bricks. Figuring out what to do with all the feelings and thoughts sometimes seems as hard as dealing with the cancer treatments. All I can do when the fear hits is take slow, deep breaths and keep my mind exactly where my body is. After two years of living with stupid lung cancer, the fear still comes, but it has much less power over me now.  So, welcome to this group of amazing folks. Please keep us posted.
Karen

Hi Julie,
I understand exactly what you mean-- the awareness hits like a ton of bricks. Figuring out what to do with all the feelings and thoughts sometimes seems as hard as dealing with the cancer treatments. All I can do when the fear hits is take slow, deep breaths and keep my mind exactly where my body is. After two years of living with stupid lung cancer, the fear still comes, but it has much less power over me now.  So, welcome to this group of amazing folks. Please keep us posted.
Karen

Jvizgart,
I hope you're working with a real live doctor for diagnosis, and *not* Dr. Google. Dr. G. is a surefire way to make us nuts. 
Hang in,
Karen

Brain MRI is in November.  That will be the 2nd one I’ve ever had.  I’ve had two total PET scans in the year since discovery.  They are 9000 a piece so I understand why I won’t have another until there are symptoms.  Stage IV lung with previous met to the brain

WOW! Congratulations!  I don't know anything about sarcoidosis, so I hope treatment offers you a pathway to a good life.
Karen

Hang in there, @Matthew B. One step at a time you and your family will get through this. We're all thinking of you.
Karen

WOW! Congratulations!  I don't know anything about sarcoidosis, so I hope treatment offers you a pathway to a good life.
Karen

Haha, Kamoto, and there you were, ready to hang out a shingle. So glad to hear this news.
My onco-radiologist has taught me a lot about what happens when stuff dies. It was good to hear when one of my brain reports came back mentioning "multiple metastases." She just shook her head and said whoever read the scan initially was doing a CYA; she and another onco-radiologist read the scans and saw a couple of blood vessels.
Tumors do weird stuff when they're dying and dead. Glad yours are well on the way to dead. The esophageal report is concerning, of course, but I bet there's a little CYA going on there, too. Glad you're going to focus on life-- there's so much to revel in!
Karen

Haha, Kamoto, and there you were, ready to hang out a shingle. So glad to hear this news.
My onco-radiologist has taught me a lot about what happens when stuff dies. It was good to hear when one of my brain reports came back mentioning "multiple metastases." She just shook her head and said whoever read the scan initially was doing a CYA; she and another onco-radiologist read the scans and saw a couple of blood vessels.
Tumors do weird stuff when they're dying and dead. Glad yours are well on the way to dead. The esophageal report is concerning, of course, but I bet there's a little CYA going on there, too. Glad you're going to focus on life-- there's so much to revel in!
Karen

Thanks Tom. 
However in my case the growth in couple of locations is greater than 5 mm and SUV is also high. 
But CEA marker was within normal range. Hard to understand. 
My oncologist is very proactive, and orders scans and blood tests quite often. Last CT scan in March was stable. CEA marker test in April was normal. But this report is concerning. 
Trying to stay positive. 

Hi All, it been a while since I posted on this site. I guessed I could wade through the treatment and reach NED by the time I posted.  Dx with Stage IV A adenocarcinoma Lung in Feb 2022, have completed 6 cycles of carboplatin, 22 of Alimta and 21 of Keytruda by July 23. Have been on maintenance therapy - carboplatin dropped - since July 2022. First 3 scans taken until April 2023 showed significant regression in nodes and lesions, almost 90% gone.
However, recent PET scan showed increase in size and SUV by a few mm, same location. No new location found as per the oncologist. Since I have been on immunotherapy, the oncologist is thinking it is more likely a pseudo-progression caused by the immune cells generating a response rather than growth. He has asked for continued treatment with Alimta and Keytruda for the next 3 cycles, with a follow up scan. He said, since I do not have any other symptoms and all my blood markers are normal, it should be okay.
It is a risk, but he seems confidant. However I am not sure. Do not know how to take this recent setback. Fingers crossed and fight continues.
GBJ

A Google Scholar search brought this:  The prospect of combination therapies with the third-generation EGFR-TKIs to overcome the resistance in NSCLC. Hope it helps....

Kamoto,
Stupid cancer. You are really being slammed. There's a lot of work being done on post treatment after Tagrisso resistance. I am hoping they can get in and get some tissue on those stupid new growths-- maybe there's a new mutation? Only a biopsy can tell, and it's pretty important that you get another one.  If you want, I can dig around some of my notes about some of the post-Tagrisso work being done. 
Karen

What mutations are you dealing with? My saved research is about EGFR mutations.