Karen_L

Hi, Diana,
Welcome! I'm glad you found us. And, I'm so glad you're making it through recovery from surgery. We're here for any questions or concerns. 
Karen

I cannot agree more with @Karen_L. After three years of COVID lockdown, then cancer diagnosis, immunotherapy, radiation and surgery, I felt 10 years older and constantly exhausted and fatigued - and my sleep was crazy disturbed.  My stamina was on par with my 75 year old dad. But made a decision to get back to myself. I did Couch 2 5k, Weekly gentle pilates, swimming when I could, walking on bad days. It took a good 3-4 months before I slowly started to feel a real difference. It has been a year now, and although my sleep isn’t perfect, I wake up refreshed on most days, and feel relatively “normal” again. X

How's your activity level? It may sound counter-intuitive, but fatigue is often relieved by more activity. And, the kind of tiredness activity generates is great for sleep.... Not everyone is an exerciser, but even walking is beneficial. I had to work up to walking 2000 steps, and that took a long time. But I got stronger. First walking, then to my stationary bike, then back to the outdoors. 

What a good grandpa! I love that you'll thank your doc. I try to remember to do this and I think it matters to them.

Hi, Diana,
Welcome! I'm glad you found us. And, I'm so glad you're making it through recovery from surgery. We're here for any questions or concerns. 
Karen

When I had my gamma knife procedure, they gave me one blue pill and I missed the whole thing-- although I was, technically awake. 🤣 I do remember hearing them comment on how out of it I was. Since I imagine it would be standard practice to give you something for the procedure, be sure to have a conversation with them well beforehand about the meds you are taking that can compound the dosage of anything else they would typically use. 

When I had my gamma knife procedure, they gave me one blue pill and I missed the whole thing-- although I was, technically awake. 🤣 I do remember hearing them comment on how out of it I was. Since I imagine it would be standard practice to give you something for the procedure, be sure to have a conversation with them well beforehand about the meds you are taking that can compound the dosage of anything else they would typically use. 

What a good grandpa! I love that you'll thank your doc. I try to remember to do this and I think it matters to them.

Very late response from here, but just chipping in, in case it is still helpful. I have the exact same mets. My medical team at a UK research hospital are doing a tonne of research on treatment of oligometastatic cancer, and my protocol has largely followed this (see my signature for a full history). Basically, they believe and are attempting to document that the combination of systemic treatment (in my case immunotherapy) and control mets with RT/SBRT/surgery is the way to go. There are a LOT of evidence that oligometastatic cancer can be treated as curative cases, although some doubt if brain mets are involved. This doesn’t mean we are considered cured, but basically they will knock out any recurrence that comes along in a similar vein to treatment of stage 1/2. It is also becoming increasingly common to use RT alongside immunotherapy and chemo, although it still hasn’t been adopted as a recommendation by NICE (similar to the FDA).

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 thrilled for you, Chad! I hope your recovery continues smoothly. Mostly I hope you do some celebrating. You've earned it!

I'm thrilled for you, Chad! I hope your recovery continues smoothly. Mostly I hope you do some celebrating. You've earned it!

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. 
 
 
 

When I had my gamma knife procedure, they gave me one blue pill and I missed the whole thing-- although I was, technically awake. 🤣 I do remember hearing them comment on how out of it I was. Since I imagine it would be standard practice to give you something for the procedure, be sure to have a conversation with them well beforehand about the meds you are taking that can compound the dosage of anything else they would typically use. 

Fingers triple crossed for you!

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. 
 
 
 

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.