Karen_L

@Mary Ann Holmes, I hear how afraid you are. I have felt that and I think everybody on this site can say they have, too. The question, I think, is whether you will let the cancer and your fear of it paralyze your life. 
You are someone who has already lived beyond diagnosis and treatment, so I believe you have the wherewithal to learn to live beyond the fear. 
First, (and I'm going to be blunt) please stop putting any faith in statistics. Lung cancer is a disease that affects every individual differently. My doctor won't even tolerate the mention of statistics. I know people who have lived for 10 and 16 years with different stages of LC-- the 16 year survivor with Stage 4. Statistics can sometimes give information about the past, but they don't predict anything. 
You have other factors you're dealing with, like ground glass. I bet we all do. Me, I have lung nodules that come and go, for example. I also have a very potent imagination. I've had to learn that I don't have luxuries that other non-cancer folks do;  I cannot, for example, start any statement with "What if___________" because that is one guaranteed method I can use to cripple myself with anxiety. 
I have seen a counselor every week since my diagnosis. It's helped me work through a lot. You have so much worry, I want to encourage you to reach out to someone for help. Your cancer center may have a clinical social work team that can work with you, or professional recommendations you can follow up on. Mine put me in touch with a number of local survivor groups; I've found a lot of help in getting together with other LC folks.  
I've also participated in Lungevity Zoom conversations among survivors and have benefitted. Here is a page of all the different supports Lungevity offers us. They have a Helpline you can call and regular Virtual Meetups you can attend.
There are a lot of strategies I've learned in the last 2+ years. Probably the most important one has been to surround myself with people who know something about lung cancer. Then, learning to live in the exact moment of time I'm present in allows me to revel in the life I have today. 
It can take some time to find and settle yourself into an emotional center. But you can. And we'll be here, rooting you on! 
Hang in,
Karen
 
 

Ummm, sorry, Doc, but NO. Take a look at this, @Karen62, and see if you'd like to look for another doctor: https://www.mycancergenome.org/content/alteration/egfr-s768i/
Karen

Hi Johnny,
Oh, don't I know about constipation.... I was told prunes (lots), magnesium 200-400 mg per day, tons of water. Sometimes it seems to work....
Keep on keeping on,
Karen
 

Hi Johnny,
Oh, don't I know about constipation.... I was told prunes (lots), magnesium 200-400 mg per day, tons of water. Sometimes it seems to work....
Keep on keeping on,
Karen
 

welcome 
i did not have taxol but from my reading its a rough go for most- i also had no radiation
i DID have carboplatin (mixed with alimta) - carboplatin has been a nothingburger for me on side effects - taste changed so all the foods i loved tasted like metal but it took awhile for it to develop and return after discontinuing (took carboplatin every 3 weeks for like 8 months) - took a white blood cell booster while on carboplatin but it kept my bloodwork (cbc, cmp, cea) in the normal ranges
i still take keytruda every 3 weeks and have no side effects that i can notice - as far as i know, that will be the rest of my life or until it attacks my body
i still take alimta every 3 weeks but that is not for your type of cancer
last 2 pet scans were completely clear - having another friday - i am stage 4 lung (similar to mesothelioma) - it had a small hit on a lower spine but the real fireworks show were the lymph nodes in my chest - big time hits 
i don't know if it was the carbo or keyturda that put me in remission but i tolerated both of them very well - i take steroids the day before, day of and day after the carbo/alimta infusion that keep me awake and eating everything in the house - and constipation is no party - but zero nausea and i still have hair 
when you get to carbo and immunotherapy i bet you will feel much better - and - when recalling how good that pizza was before carbo, you can still eat the pizza (that now tastes like they put grated steel on it instead of cheese) because it won't make you nauseous - bonus tip - peanut butter still tastes like peanut butter - even better - CHOCOLATE STILL TASTES LIKE CHOCOLATE (and your sisters will bury you in reeses peanut butter cups and peanut butter m&ms
(to be fair, i am on a ton of old blue haired ladies prayer lists - best ones to be on because they are too old to sin and have a lot of pull upstairs)
 

Ummm, sorry, Doc, but NO. Take a look at this, @Karen62, and see if you'd like to look for another doctor: https://www.mycancergenome.org/content/alteration/egfr-s768i/
Karen

Hi @LSholt, I'm so sorry you have to be here, but this is a great group.
Do you know what protocol your team is following? Just curious-- I started as a IIIA and the tumor board started me with the Pacific Study protocols: chemorads-- carboplatin/paclitaxel -- followed by immunotherapy (durvalumab). 
Regarding the cough: has anyone done a scan for pneumonitis? That's a kind of inflammation of the lung. Coughing can be a signal of that inflammation. You'd want to know that before starting immunotherapy as pneumonitis can become an issue with some of them. Do you know what the immuno agent will be?
This is hard, I know, but you are doing great. Hang in,
Karen

Hi @LSholt, I'm so sorry you have to be here, but this is a great group.
Do you know what protocol your team is following? Just curious-- I started as a IIIA and the tumor board started me with the Pacific Study protocols: chemorads-- carboplatin/paclitaxel -- followed by immunotherapy (durvalumab). 
Regarding the cough: has anyone done a scan for pneumonitis? That's a kind of inflammation of the lung. Coughing can be a signal of that inflammation. You'd want to know that before starting immunotherapy as pneumonitis can become an issue with some of them. Do you know what the immuno agent will be?
This is hard, I know, but you are doing great. Hang in,
Karen

Ummm, sorry, Doc, but NO. Take a look at this, @Karen62, and see if you'd like to look for another doctor: https://www.mycancergenome.org/content/alteration/egfr-s768i/
Karen

Ummm, sorry, Doc, but NO. Take a look at this, @Karen62, and see if you'd like to look for another doctor: https://www.mycancergenome.org/content/alteration/egfr-s768i/
Karen

You know, Johnny, I read your post so quickly I overlooked that initial phrase-- sorry about that. Yes, I would assume that needle & tissue biopsies are the same, especially given the doctor's comment about waiting for results. (Tissue-based biopsies take several weeks.) 
Fingers double-crossed that the infusions go well and that they deal the tumor a mighty blow. 
Karen

Hi Karen,
Just a quick welcome. Even if there aren't folks here who share your specific diagnosis, we understand diagnostic and treatment experiences. I hope you'll keep us posted.
 
Karen

Hi Beth,
The reason he says "if it's cancer, it's probably adenocarcinoma" is because that's the most common type of LC. The diagnostic process is a long one and involves multiple tests and processes, the PET being one of them. 
I don't know much about your health care system, but you will need some info about how to be an effective advocate. I have a good resource posted in my footer. 
I also don't know how they will respond to her case if she is not planning to give up smoking. 
Best of luck as you and she move ahead in this process. You might find the caregiver strand here helpful as well. 
Karen
 

Go Ken! It's so wonderful to read of all the positive movement. Enjoy all these moments!
Karen

You know, Johnny, I read your post so quickly I overlooked that initial phrase-- sorry about that. Yes, I would assume that needle & tissue biopsies are the same, especially given the doctor's comment about waiting for results. (Tissue-based biopsies take several weeks.) 
Fingers double-crossed that the infusions go well and that they deal the tumor a mighty blow. 
Karen

You know, Johnny, I read your post so quickly I overlooked that initial phrase-- sorry about that. Yes, I would assume that needle & tissue biopsies are the same, especially given the doctor's comment about waiting for results. (Tissue-based biopsies take several weeks.) 
Fingers double-crossed that the infusions go well and that they deal the tumor a mighty blow. 
Karen

Johnny, 
I'm late to this discussion, but I wanted to second and thrid what Tom and Rikke have said. And, add that a tissue biopsy is considered the gold standard. I hope that's already happened, or is on the calendar. 
Best wishes,
Karen
 

Johnny, 
I'm late to this discussion, but I wanted to second and thrid what Tom and Rikke have said. And, add that a tissue biopsy is considered the gold standard. I hope that's already happened, or is on the calendar. 
Best wishes,
Karen
 

Hi Beth,
The reason he says "if it's cancer, it's probably adenocarcinoma" is because that's the most common type of LC. The diagnostic process is a long one and involves multiple tests and processes, the PET being one of them. 
I don't know much about your health care system, but you will need some info about how to be an effective advocate. I have a good resource posted in my footer. 
I also don't know how they will respond to her case if she is not planning to give up smoking. 
Best of luck as you and she move ahead in this process. You might find the caregiver strand here helpful as well. 
Karen
 

Hi Karen,
Just a quick welcome. Even if there aren't folks here who share your specific diagnosis, we understand diagnostic and treatment experiences. I hope you'll keep us posted.
 
Karen

I’m thrilled for you, Rikke. Your sleep will be sooooo sweet with these results drifting through your mind. Enjoy.
K

I’m thrilled for you, Rikke. Your sleep will be sooooo sweet with these results drifting through your mind. Enjoy.
K

Wow, Mike, this sounds positive. Glas the surgery was a success and that the next step is clear. Hope recovery goes smoothly. 
Karen

@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