Karen_L

Hi Phyllis, and thank you for your great work in raising awareness. 
I have compound mutations also, one of which is an Exon 20 point mutation (S768i). I've encountered one other person with this mutation.  Luckily my other is garden variety EGFR L858R, for which there are some targeted treatments. 
If you have an Exon 20 insertion, you've probably heard about this. 
Also, you may already be a part of Marcia Horn's Exon 20 Facebook group. She's amazing. (Because I have a point mutation, I don't qualify. 🤷‍♀️ ) But you might want to check it out if you haven't already.
Best,
Karen

Jim, 
So sorry to hear your wife and you are going through this. Here's hoping someone here has some experiences to share.  Just wanted to say Welcome. 
Karen

Hi Sam, 
Sorry you have to be here, but it's a good place to land. I don't have any experience with the stuff you're asking about, but wanted to welcome you anyway!
Karen

Hi Phyllis, and thank you for your great work in raising awareness. 
I have compound mutations also, one of which is an Exon 20 point mutation (S768i). I've encountered one other person with this mutation.  Luckily my other is garden variety EGFR L858R, for which there are some targeted treatments. 
If you have an Exon 20 insertion, you've probably heard about this. 
Also, you may already be a part of Marcia Horn's Exon 20 Facebook group. She's amazing. (Because I have a point mutation, I don't qualify. 🤷‍♀️ ) But you might want to check it out if you haven't already.
Best,
Karen

Jim, 
So sorry to hear your wife and you are going through this. Here's hoping someone here has some experiences to share.  Just wanted to say Welcome. 
Karen

Hi Sam, 
Sorry you have to be here, but it's a good place to land. I don't have any experience with the stuff you're asking about, but wanted to welcome you anyway!
Karen

Yay for Cancun and drinks with tiny umbrellas. Enjoy!

Well, I'm pretty appalled at your mom's treatment-- or non-treatment, as it were. It brings back my experience with my mom and dad, during the last 6 weeks of his life. They lived in a small New England town at the time and I found the medical care he received there lacking to the point of being unbelievable. 
It was not long between the time I persuaded my mom that he needed care from a major medical center to his death. Yes, the care was in place, but the cancer had progressed so quickly, all they could do was help manage his pain. That last night, every time I saw him grimace, I told the nurses I thought he was in pain. I wonder if they may have given him enough morphine to persuade his body to finally let go. 
I was glad he was finally done with all that he had been through. The surgeon called my mom after the autopsy and said they were still arguing about whether he died of renal or adrenal cancer. We didn't really care. 
You have been through a horrible ordeal. I hope you are able to find respite for your spirit and take comfort in your mom's well-lived life. 
Karen

Oh, Rikke, this sounds so wonderful. It's amazing to feel free of medical stuff, and for me, the first time, it felt a little odd. But, oh, I got used to it. You will have wonderful travels, and that undercurrent of health will make it even better. 
K

Yay for Cancun and drinks with tiny umbrellas. Enjoy!

Well, I'm pretty appalled at your mom's treatment-- or non-treatment, as it were. It brings back my experience with my mom and dad, during the last 6 weeks of his life. They lived in a small New England town at the time and I found the medical care he received there lacking to the point of being unbelievable. 
It was not long between the time I persuaded my mom that he needed care from a major medical center to his death. Yes, the care was in place, but the cancer had progressed so quickly, all they could do was help manage his pain. That last night, every time I saw him grimace, I told the nurses I thought he was in pain. I wonder if they may have given him enough morphine to persuade his body to finally let go. 
I was glad he was finally done with all that he had been through. The surgeon called my mom after the autopsy and said they were still arguing about whether he died of renal or adrenal cancer. We didn't really care. 
You have been through a horrible ordeal. I hope you are able to find respite for your spirit and take comfort in your mom's well-lived life. 
Karen

Shella, I haven't had this combo, but I wish you all the best with it. 
 
K

Oh, Rikke, this sounds so wonderful. It's amazing to feel free of medical stuff, and for me, the first time, it felt a little odd. But, oh, I got used to it. You will have wonderful travels, and that undercurrent of health will make it even better. 
K

Yay for Cancun and drinks with tiny umbrellas. Enjoy!

PTSD is a real thing with cancer survivors. And, I'm with Tom and Lou on this. 
Hang in, Kamoto. Stay warm. 
Karen

Gamma knife is great-- I know someone who has had 29 lesions obliterated. 
Still, how upsetting for you. I hope you are settling in with the new situation. 
Karen

Gamma knife is great-- I know someone who has had 29 lesions obliterated. 
Still, how upsetting for you. I hope you are settling in with the new situation. 
Karen

Gamma knife is great-- I know someone who has had 29 lesions obliterated. 
Still, how upsetting for you. I hope you are settling in with the new situation. 
Karen

PTSD is a real thing with cancer survivors. And, I'm with Tom and Lou on this. 
Hang in, Kamoto. Stay warm. 
Karen

Hi June,
Your experience is exactly why people say if there's a recurrence we must retest for new mutations. Stupid lung cancer is so sneaky. So glad you're seeing options!
Karen

June, 
What mutations are you dealing with? 
I'm glad your gamma knife experience was smooth. I found the whole process smooth as well, and have had no adverse effects.
I don't know the chemo drugs you refer to, I'm sorry.  But I do know that if you tell them you need to be at your son's wedding and NOT be sick, they may be able to work with you to arrange treatments to meet that dream. (My daughter was hospitalized for four months with a form of lymphoma when she was 22. When she announced that she wanted to be out of the hospital for Thanksgiving and Christmas, the oncologist sat down at her bedside and worked out a new treatment schedule. It was awesome.)
When I was doing chemo, the nurses gave me tons of drugs for any possible side effect-- I think I had three anti-nausea meds alone. They can get you primed like that, too. 
As to the treatment options, I'm impressed that your docs are thinking about trials without your prompting. As part of my decision process, I would look carefully at what phase the trial is in and what degree of a new treatment you'd be experiencing. If you were to do a trial, could you move back to the conventional treatment if you needed to? Questions like that feel important. 
Please keep us posted!
K

Hi June,
Your experience is exactly why people say if there's a recurrence we must retest for new mutations. Stupid lung cancer is so sneaky. So glad you're seeing options!
Karen

@GBJ You know, IMO, this "be positive" cancer thing is sometimes more pressure than we need. Just sayin'.
This may seem to be heresy, but it's beyond me how a human can feel positive about something as scary.
We all make peace with our situations in different ways. But I am never positive about lung cancer. I think it's stupid and unfair.  When there's a change in my disease, I'm numb. After a little while, I feel a reprise of the emotions I had with my initial diagnosis: I feel angry and frightened and full of grief.
Eventually, I choose to say, "OK, that's how I feel. I see that, and now I'm going to re-examine my day-to-day and see what I might need to do to make a meaningful life within the new parameters." Sometimes things happen quickly enough that I have to juggle feelings and actions at the same time. That's when I go to my primary defense: dark humor in the face of the absolute absurdity of the situation. But all that other stuff is stewing in the background. It's exhausting. 
Just take care of yourself in whatever way you need to. Each day, find one thing, anything, that brings you peace or pleasure, or even a laugh. Take a deep breath, take a couple, when you feel afraid. Unless it's helpful to you right now, you don't have to be positive. You just need to cope. 
We're here. Keep us posted. 
Karen

Hi June,
Your experience is exactly why people say if there's a recurrence we must retest for new mutations. Stupid lung cancer is so sneaky. So glad you're seeing options!
Karen

I was on Paclitaxel & Cisplatin. I had some nausea, easily managed with Zofran & Compezine. 
K