Karen_L

Hi Karen_L,
Wow, was this video ever relevant and timely for me to watch. I watched it from start to finish and I feel like it confirmed a lot about what I've been learning and, of course, I gained even greater depth of knowledge on many topics such as the various types of biopsy and bronchoscopies performed. Thank you so much for sharing with me! It's reassuring to hear that you feel I am at one of the top cancer research centers in the US and having a nodule board discuss. I'm counting my blessings for this privilege. 

Hi @LJH
The good news is that you're at one of the top cancer research centers in the country, and it wounds like they took your case to a tumor board to discuss. This is a good thing-- my radiologist says these discussions can be quite heated, but also very thorough. 
As you sit in anxiety, you might find it useful to watch this video about lung nodules. It's from a Lung Cancer Living Room run by the Go2 Foundation, formerly Adadario Foundation. Here's the description: 
Link: 
 

@Justin1970 NONE OF THIS IS FAIR! The assault, the fall, your doctors' responses, your stupid brain met. Of course you're down. Seems like there might be some anger under that down-ness, too. 
My radiologist said she would monitor me for adverse reactions to the gamma knife for two years. You are well within that time period since your gamma knife. 
Let me just rant here for a minute: You have been a good advocate for yourself and they are a bunch of idiots. Especially the stupid idiot who made that callous remark to your mum.
OK, rant over. 
I don't understand how your medical system operates. Here, (U.S.) I would be seeking another opinion from a respected oncology radiologist in a different clinic, as well as contacting a primary care person to get a handle on the blood pressure. I would be doing that immediately. That may not be possible in your system, but it doesn't mean you can't take some action on your behalf.
I suggest you start to document all the events, from gamma knife to now. Date each event, whether it was just a phone call or concern you raised, and write down 1) what happened, 2) who you spoke to, 3) what they said.
Then make a list of what the issues are you are dealing with.
Then find someone to give that to and discuss how each concern/issue will be addressed. Is there a patient advocate? Someone who helps patients navigate your health care system? A director of a clinic? Can someone in your family research this and get an appointment? 
The priority, in my mind, is that blood pressure. 
Do not let them steal your power. You can act in your own behalf. It may not make the people in your system happy, but too friggin' bad.
GO GET 'EM, JUSTIN. 
PS I know this is not an approach everyone would be comfortable with and I understand that-- you must do what you are comfortable with, and I, for one, will support you in whatever you decide. 
I still say, GO GET 'EM.

@Justin1970 NONE OF THIS IS FAIR! The assault, the fall, your doctors' responses, your stupid brain met. Of course you're down. Seems like there might be some anger under that down-ness, too. 
My radiologist said she would monitor me for adverse reactions to the gamma knife for two years. You are well within that time period since your gamma knife. 
Let me just rant here for a minute: You have been a good advocate for yourself and they are a bunch of idiots. Especially the stupid idiot who made that callous remark to your mum.
OK, rant over. 
I don't understand how your medical system operates. Here, (U.S.) I would be seeking another opinion from a respected oncology radiologist in a different clinic, as well as contacting a primary care person to get a handle on the blood pressure. I would be doing that immediately. That may not be possible in your system, but it doesn't mean you can't take some action on your behalf.
I suggest you start to document all the events, from gamma knife to now. Date each event, whether it was just a phone call or concern you raised, and write down 1) what happened, 2) who you spoke to, 3) what they said.
Then make a list of what the issues are you are dealing with.
Then find someone to give that to and discuss how each concern/issue will be addressed. Is there a patient advocate? Someone who helps patients navigate your health care system? A director of a clinic? Can someone in your family research this and get an appointment? 
The priority, in my mind, is that blood pressure. 
Do not let them steal your power. You can act in your own behalf. It may not make the people in your system happy, but too friggin' bad.
GO GET 'EM, JUSTIN. 
PS I know this is not an approach everyone would be comfortable with and I understand that-- you must do what you are comfortable with, and I, for one, will support you in whatever you decide. 
I still say, GO GET 'EM.

@LilyMirSending courage. You got this. Don't forget, being sick can't make you feel less resilient than usual. Take some deep breaths and one step at a time....

@Justin1970 NONE OF THIS IS FAIR! The assault, the fall, your doctors' responses, your stupid brain met. Of course you're down. Seems like there might be some anger under that down-ness, too. 
My radiologist said she would monitor me for adverse reactions to the gamma knife for two years. You are well within that time period since your gamma knife. 
Let me just rant here for a minute: You have been a good advocate for yourself and they are a bunch of idiots. Especially the stupid idiot who made that callous remark to your mum.
OK, rant over. 
I don't understand how your medical system operates. Here, (U.S.) I would be seeking another opinion from a respected oncology radiologist in a different clinic, as well as contacting a primary care person to get a handle on the blood pressure. I would be doing that immediately. That may not be possible in your system, but it doesn't mean you can't take some action on your behalf.
I suggest you start to document all the events, from gamma knife to now. Date each event, whether it was just a phone call or concern you raised, and write down 1) what happened, 2) who you spoke to, 3) what they said.
Then make a list of what the issues are you are dealing with.
Then find someone to give that to and discuss how each concern/issue will be addressed. Is there a patient advocate? Someone who helps patients navigate your health care system? A director of a clinic? Can someone in your family research this and get an appointment? 
The priority, in my mind, is that blood pressure. 
Do not let them steal your power. You can act in your own behalf. It may not make the people in your system happy, but too friggin' bad.
GO GET 'EM, JUSTIN. 
PS I know this is not an approach everyone would be comfortable with and I understand that-- you must do what you are comfortable with, and I, for one, will support you in whatever you decide. 
I still say, GO GET 'EM.

@Cin We each go to our unique dark corner whenever there's something different. I'm great until after the dust settles, then I crawl under the bed for a while before I can function again. 
I have a fatty cyst on my liver that the scan-readers remark on, but no one cares, so I don't either. Even a few nodules that appeared didn't get any of us too excited-- they were just too teeny. And, in fact, they disappeared. 
I hope you can take deep breaths and walk through this with a bit of confidence. You can do it!
 

Woo Hoo! I love to hear great news like this.

Fabulous news! 🎉

Woohoo! 🥰

Great news, Karen! Like Tom, my radiation scarring also cleared up, and I hope yours does too. 

Fantastic news!! Really happy for you 😊

Karen,
This is such good news.  I'm thrilled to see these results.  Also, thanks for the information regarding immunotherapy.  I have a lot to learn in that area and every bit helps.  Enjoy the good news and celebrate as you see fit.
Lou

So happy to hear your awesome news, Karen! Looks like we both had a good week! 

That is really awesome Karen. So happy for you.

Karen,
Wow! This is superb news. Of course, you might know I am a big fan of precision radiation and am so happy your treatment blasted those troubling mets.
I don't think any of us has a complete picture on immunotherapy treatment, especially duration of treatment. I've heard there is an emerging standard that suggests 2 years of therapy, then screening. Missing when discussing duration is the fact that immunotherapy works and many late stage lung cancer survivors are leading productive lives because of this treatment. My radiation scarring cleared up and yours will likely clear also.
Stay the course.
Tom

My mum doesn't have COVID. She says that a lot of her friends have been feeling unwell as well. 

Hi, Carrie, 
May I suggest you shoot a note or make a quick call to the physician who ordered the scan and ask them— I always think going to the source is the best idea. I think it’s especially important to share with them the concern that is prompting  your question. 
Best,
Karen

I ate a lot of ice cream and Trader Joe's macaroni and cheese because I had esophagitis from radiation when I was getting chemo. What I could tolerate changed from hour to hour, not because of taste but because of pain. She should eat whatever she can tolerate. 
I also strongly recommend a supportive/palliative care specialist for her quality of life issues. Of course, the decision to continue chemo is hers, but the palliative care doctor will be able to find out why she doesn't want to continue. 

Hi I agree with lily just let her eat anything she enjoys I also had a complan drink everyday and it did help, I did lose some taste for things but it did come back and the chemotherapy will get easier I promise, its something unfortunately we have to suffer but it will be worth it 
Wish her well and take care 
Justin 

Let her eat anything she usually likes , no matter what it is. I ate so much ice cream when my chemo made me feel terrible at first. I also drank high protein meal replacement drinks flavoured with chocolate. I am not sure what stage your mom is and chemo can be certainly brutal but it will pass, try to have her focus on hope and better times after chemo. Make sure her oncologist knows as they may have solutions. She may benefit a lot from engaging a pain/symptoms management doctor as well as a counsellor. Wishing her the best!

I had my 3-month MRI this past Monday and saw the onc. radiologist today. There's nothing new to report-- YAY! The ring around the lesion they zapped is fading & breaking up. The little spots they are watching are so small they have a hard time finding them, but the head of the gamma knife program and my radiologist think they're probably just blood vessels. 
My pulse ox was 99! 
The conversation with her is always interesting. She says I've had a superb response to chemo rads and immunotherapy. But, I said, I had barely 25% of the protocol treatment for immunotherapy (Pacific Study.) She said they aren't terribly clear about how much immunotherapy it really takes to jumpstart the immune system. And, she also said she suspected the brain had already been seeded prior to any treatment. But, I said, it's my understanding that EGFR mutated lung cancer doesn't respond to immunotherapy. No, she said, according to Pacific Study treatment protocols, EGFR-positive patients had no difference in response than patients with non-EGFR mutated lung cancers. Which doesn't give you a complete picture because she didn't put her statement in context of total results, but it sounds nice. 
She also took a look at my most recent CT scans of the lungs The only thing to see is ongoing scarring from treatment and pneumonitis, and that may disappear or maybe it won't. 
Pretty amazing, right? I am feeling very, very grateful. 
 
 

I had my 3-month MRI this past Monday and saw the onc. radiologist today. There's nothing new to report-- YAY! The ring around the lesion they zapped is fading & breaking up. The little spots they are watching are so small they have a hard time finding them, but the head of the gamma knife program and my radiologist think they're probably just blood vessels. 
My pulse ox was 99! 
The conversation with her is always interesting. She says I've had a superb response to chemo rads and immunotherapy. But, I said, I had barely 25% of the protocol treatment for immunotherapy (Pacific Study.) She said they aren't terribly clear about how much immunotherapy it really takes to jumpstart the immune system. And, she also said she suspected the brain had already been seeded prior to any treatment. But, I said, it's my understanding that EGFR mutated lung cancer doesn't respond to immunotherapy. No, she said, according to Pacific Study treatment protocols, EGFR-positive patients had no difference in response than patients with non-EGFR mutated lung cancers. Which doesn't give you a complete picture because she didn't put her statement in context of total results, but it sounds nice. 
She also took a look at my most recent CT scans of the lungs The only thing to see is ongoing scarring from treatment and pneumonitis, and that may disappear or maybe it won't. 
Pretty amazing, right? I am feeling very, very grateful. 
 
 

I had my 3-month MRI this past Monday and saw the onc. radiologist today. There's nothing new to report-- YAY! The ring around the lesion they zapped is fading & breaking up. The little spots they are watching are so small they have a hard time finding them, but the head of the gamma knife program and my radiologist think they're probably just blood vessels. 
My pulse ox was 99! 
The conversation with her is always interesting. She says I've had a superb response to chemo rads and immunotherapy. But, I said, I had barely 25% of the protocol treatment for immunotherapy (Pacific Study.) She said they aren't terribly clear about how much immunotherapy it really takes to jumpstart the immune system. And, she also said she suspected the brain had already been seeded prior to any treatment. But, I said, it's my understanding that EGFR mutated lung cancer doesn't respond to immunotherapy. No, she said, according to Pacific Study treatment protocols, EGFR-positive patients had no difference in response than patients with non-EGFR mutated lung cancers. Which doesn't give you a complete picture because she didn't put her statement in context of total results, but it sounds nice. 
She also took a look at my most recent CT scans of the lungs The only thing to see is ongoing scarring from treatment and pneumonitis, and that may disappear or maybe it won't. 
Pretty amazing, right? I am feeling very, very grateful. 
 
 

WOW. I love your new staging result: "Stage 4 with an asterisk"
Congratulations on having a care team that is going all Rambo on the stupid cancer. Can't wait to hear what happens next.