LexieCat

Sounds VERY encouraging! You're off to a great start--I'll look forward to hearing your boring scan results, lol.  

Sounds VERY encouraging! You're off to a great start--I'll look forward to hearing your boring scan results, lol.  

I didn't find the bronchoscopy to be too bad. Sore throat for a day or two from the breathing tube. You'll need to have someone drive you home (due to the anesthetic) but you should be released in just a few hours.
Glad things are moving along for you.

I didn't find the bronchoscopy to be too bad. Sore throat for a day or two from the breathing tube. You'll need to have someone drive you home (due to the anesthetic) but you should be released in just a few hours.
Glad things are moving along for you.

Sounds VERY encouraging! You're off to a great start--I'll look forward to hearing your boring scan results, lol.  

Thanks everyone for the positive feedback I really appreciate it. @LexieCatim sorry to hear about your scans, it sounds a little confusing but hopefully they get that sucker under control. It does feel very relieving that everything is working as planned hopefully it continues so I can keep on this treatment for as long as possible. 

Oh, Ale, I am SO happy for y9u. If anyone was due for good news, it's you. That's simply awesome.
My scan was less than awesome, though not dire. Got an odd cloudy area the radiologist thought was disease progression; doc disagrees and thinks it looks pneumonia-ish. Got more antibiotics (to go with the ones I'm already taking) and another scan in a month. Hopefully that one will be closer to awesome.  Weird thing is I have no symptoms--OTOH, I'm feeling great.
Doesn't it feel good to know all the medical stuff we're going through is paying off?

I wondered about the carboplatin and how long it can be given.  The original plan is to do maintenance for 2 years so hopefully with my SUV numbers being so much better and the nodule responding as well as it as, along with the much larger area in my right arm, the treatment I'm getting will be all that is needed.  
Hope your doctor's appointment went well!  I've been thinking about you.

OK, all due respect to your doctor, but to my knowledge (and I've been dealing with lung cancer since my first diagnosis and surgery in 2017) lung cancer can't be diagnosed without a biopsy. There may be strong suggestions that that's what it is, but it can't be definitively diagnosed from a CT scan. Your doctor certainly might be right, and it will turn out to be cancer, but I'm just suggesting you not get ahead of yourself. The PET CT will provide more info, but you really need the biopsy to know what you're dealing with. 
Anyway, glad you have all those tests lined up. You'll find out, if you're around here for any length of time, that it pays to take things one step at a time. The waiting for tests and results is one of the hardest, most frustrating aspects of this whole deal. But learning to be patient and not get carried away will be good for your mental health.  

Hi, Justin, and welcome. I'm curious--if you haven't had a biopsy yet, how is it you've been diagnosed with lung cancer? Generally, a biopsy is necessary to diagnose, though nodules may be suspicious for cancer. I had a nodule that had grown and developed a spiculated appearance, which made it suspicious, but the cancer could not be confirmed until the pathology results came back after surgery.
Good luck--hopefully if you do have lung cancer it will be early stage, though all stages are treatable.

Wow--great news!! The thing is, there are pretty strict protocols about how long they can give carboplatin. There might not be an option to give it longer than four cycles. The 3.4 uptake doesn't necessarily mean there is active cancer, I don't think. 
You're doing great--keep us posted on the next steps. And don't worry about going on maintenance too soon. For a lot of people the maintenance eliminates remaining cancer. 
I just got an email that I have new test results in my portal. I'm assuming that might be my scan (though it could also be lab results from blood draw yesterday). But my appointment with the doc is in 45 minutes and I'd rather wait and have him interpret the scan and report. If I'd looked at the last one, myself, I wouldn't have grasped the significance. Better not to let my imagination run away with me!

Good luck!!!! Waiting to have my scan now. 

Wow--great news!! The thing is, there are pretty strict protocols about how long they can give carboplatin. There might not be an option to give it longer than four cycles. The 3.4 uptake doesn't necessarily mean there is active cancer, I don't think. 
You're doing great--keep us posted on the next steps. And don't worry about going on maintenance too soon. For a lot of people the maintenance eliminates remaining cancer. 
I just got an email that I have new test results in my portal. I'm assuming that might be my scan (though it could also be lab results from blood draw yesterday). But my appointment with the doc is in 45 minutes and I'd rather wait and have him interpret the scan and report. If I'd looked at the last one, myself, I wouldn't have grasped the significance. Better not to let my imagination run away with me!

Good luck!!!! Waiting to have my scan now. 

Good luck!!!! Waiting to have my scan now. 

Hey yall, today is my scan so I’m pretty nervous. Wish me luck 🤞🏼😬

Great summary, Lou, I can't think of a thing to add.
Except maybe one. It's a rare situation that doesn't affect most people, but it did me and a few other people I know. I developed something called "crepitus" or "sub-cutaneous emphysema" right after surgery. Has nothing to do with what most people think of as emphysema. This is a small leak of air that gets into the tissues under your skin (sub-cutaneous). It made me feel at first like my glands in my neck were swollen and then it spread to my whole chest and up my face. I looked like a chipmunk with the mumps! 
Sometimes this resolves on its own but if it progresses, it becomes VERY uncomfortable--if you look it up online you can see some people have even their eyes swollen shut! So you do NOT want to let it get to that point. 
I had to go back in the hospital for a few days with a chest tube to slowly deflate, and then I was fine. 
As I said, it's pretty rare but it does happen, and if it does, it's something to report to your doctor. Not generally life-threatening, but a complication you want to address ASAP.

The first scan (I think about two months after starting maintenance) was equivocal. The radiologist thought it showed progression; my oncologist wasn't convinced and wanted me to continue on maintenance (my then-oncologist is a highly regarded expert--I trust his judgment). The next scan, about two months later, left no doubt--the cancer was definitely progressing. At that point, my doctor suggested two clinical trials they were doing at Penn (where I get my oncology treatment). I started the paperwork for one of those, but then I read about a trial here on the forums that sounded super interesting. It's called TIL therapy (stands for tumor-infiltrating lymphocytes). First they take a sample of tumor tissue (my surgeon could not access the main tumor so the sample was taken from my "hot" lymph nodes) and send it off to a lab. There, they extract the lymphocytes that have already invaded the tumor (so they already recognize the tumor as a bad guy to kill) and multiply them till they are in the billions. That takes about three weeks. Then I was admitted to the hospital and given a 5-day course of intense chemo (to deplete my lymphocytes to make room for the new ones), followed by an infusion of the new and improved lymphocytes, followed by several doses of IL-2, a biologic that revs up the immune system. All told, I was in the hospital for three weeks. This trial was at the hospital where I had my lobectomy four years ago, before the recurrence that made me Stage IV.
The doctor told me not to expect too much from the first scan, but mine was terrific--the tumor shrank dramatically. The best thing about this treatment is that if it works, that's it--no more cancer treatments. That's the main reason I chose this trial over the others--which involved ongoing treatment with new drugs.
There are several ways to find clinical trials. Your oncologist might know of some. Lungevity provides a matching service. And Go2 Foundation can also help find suitable trials. Or you can do your own searches at clinicaltrials.gov. I read about my trial here on the forums, and it happened to be local (happily for me). Some of these trials have sites all over the country. Others are smaller and at fewer locations. Some trial sponsors will provide help with travel and lodging if it's far away.
So you're a ways off from having to look into that (although there are also trials for newly diagnosed who have not been treated), but it's good to have in the back of your mind the fact that there are options--often, many of them. My oncologist said there were literally hundreds of trials that i might qualify for, having progressed after first-line therapy. Incidentally, I have plain-vanilla adenocarcinoma with no targetable mutations.

Just wanted to say hi to all. Michelle I hope your family got through the storms ok. I’m just living life. Hope everyone is doing well. 

Hi, D, and welcome out of lurkdom. I don't have any experience with pulmonary emboli. It's great that your nodule is gone--hopefully any other spots, like your arm, are gone, too.
Just a heads-up--hopefully this will not happen to you, but I had a terrific response on the triplet, but my cancer started to progress while on the maintenance. Just keep in mind, there are TONS of clinical trials for folks who have progression after first line chemo/immunotherapy. I just did one and so far, it's working great (next scans next week). Many of those expenses are covered by the study's sponsor.
Also, have you applied for Social Security Disability (SSDI)? Stage IV lung cancer patients automatically qualify for benefits, and after two years you would be eligible for Medicare. Even though Stage IV cancer is treatable, lots of us have to undergo treatment for quite a while. So it's worthwhile to plan for that possibility.
Let us know how your PET CT turns out. I go for my next CT scans the same day, so I'll be rooting for you, too.

The first scan (I think about two months after starting maintenance) was equivocal. The radiologist thought it showed progression; my oncologist wasn't convinced and wanted me to continue on maintenance (my then-oncologist is a highly regarded expert--I trust his judgment). The next scan, about two months later, left no doubt--the cancer was definitely progressing. At that point, my doctor suggested two clinical trials they were doing at Penn (where I get my oncology treatment). I started the paperwork for one of those, but then I read about a trial here on the forums that sounded super interesting. It's called TIL therapy (stands for tumor-infiltrating lymphocytes). First they take a sample of tumor tissue (my surgeon could not access the main tumor so the sample was taken from my "hot" lymph nodes) and send it off to a lab. There, they extract the lymphocytes that have already invaded the tumor (so they already recognize the tumor as a bad guy to kill) and multiply them till they are in the billions. That takes about three weeks. Then I was admitted to the hospital and given a 5-day course of intense chemo (to deplete my lymphocytes to make room for the new ones), followed by an infusion of the new and improved lymphocytes, followed by several doses of IL-2, a biologic that revs up the immune system. All told, I was in the hospital for three weeks. This trial was at the hospital where I had my lobectomy four years ago, before the recurrence that made me Stage IV.
The doctor told me not to expect too much from the first scan, but mine was terrific--the tumor shrank dramatically. The best thing about this treatment is that if it works, that's it--no more cancer treatments. That's the main reason I chose this trial over the others--which involved ongoing treatment with new drugs.
There are several ways to find clinical trials. Your oncologist might know of some. Lungevity provides a matching service. And Go2 Foundation can also help find suitable trials. Or you can do your own searches at clinicaltrials.gov. I read about my trial here on the forums, and it happened to be local (happily for me). Some of these trials have sites all over the country. Others are smaller and at fewer locations. Some trial sponsors will provide help with travel and lodging if it's far away.
So you're a ways off from having to look into that (although there are also trials for newly diagnosed who have not been treated), but it's good to have in the back of your mind the fact that there are options--often, many of them. My oncologist said there were literally hundreds of trials that i might qualify for, having progressed after first-line therapy. Incidentally, I have plain-vanilla adenocarcinoma with no targetable mutations.

Hi, D, and welcome out of lurkdom. I don't have any experience with pulmonary emboli. It's great that your nodule is gone--hopefully any other spots, like your arm, are gone, too.
Just a heads-up--hopefully this will not happen to you, but I had a terrific response on the triplet, but my cancer started to progress while on the maintenance. Just keep in mind, there are TONS of clinical trials for folks who have progression after first line chemo/immunotherapy. I just did one and so far, it's working great (next scans next week). Many of those expenses are covered by the study's sponsor.
Also, have you applied for Social Security Disability (SSDI)? Stage IV lung cancer patients automatically qualify for benefits, and after two years you would be eligible for Medicare. Even though Stage IV cancer is treatable, lots of us have to undergo treatment for quite a while. So it's worthwhile to plan for that possibility.
Let us know how your PET CT turns out. I go for my next CT scans the same day, so I'll be rooting for you, too.

Is it normal to be stressed out and a little bit nuts when facing the prospect of lung cancer? Sure is.
Enlarged lymph nodes rarely cause pain. In rare cases, there could be pain if a nerve is pressed against, but you'd know if you had a lymph node that big--it would have shown up on the CT scan. 
And anxiety can definitely constrict your breathing. Listen, I have Stage IV lung cancer, had one lobe removed, and haven't had any breathing problems, other than those related to my treatment I just finished.
Do your best to relax, and wait till you have more information. I know it's hard not to get carried away, but seriously, it doesn't help anything and will just make you miserable in the meantime.

Wow, Lexie, such incredible information.  I am blown away by the things medical science can do in these days.  How exciting!  Thank you for taking your time to explain all of what you have been through.  It sure does a newly-diagnosed person a lot of good to read there are so many options available for treatment these days.  My oncologist said, right after saying you have stage IV lung cancer, is "This is not a death sentence."  He said 15 years ago, he would have told someone in my shoes to start getting their affairs together but not anymore (not that that should be overlooked and/or set aside by any means) but just the fact that there are options.  I don't even know my TNM, I'm embarrassed to say.  I have vanilla NSCLC with no identifiable mutations as well.  I'll be thinking of you next Tuesday when we both get our scans  Here's hoping we both get good news!

The first scan (I think about two months after starting maintenance) was equivocal. The radiologist thought it showed progression; my oncologist wasn't convinced and wanted me to continue on maintenance (my then-oncologist is a highly regarded expert--I trust his judgment). The next scan, about two months later, left no doubt--the cancer was definitely progressing. At that point, my doctor suggested two clinical trials they were doing at Penn (where I get my oncology treatment). I started the paperwork for one of those, but then I read about a trial here on the forums that sounded super interesting. It's called TIL therapy (stands for tumor-infiltrating lymphocytes). First they take a sample of tumor tissue (my surgeon could not access the main tumor so the sample was taken from my "hot" lymph nodes) and send it off to a lab. There, they extract the lymphocytes that have already invaded the tumor (so they already recognize the tumor as a bad guy to kill) and multiply them till they are in the billions. That takes about three weeks. Then I was admitted to the hospital and given a 5-day course of intense chemo (to deplete my lymphocytes to make room for the new ones), followed by an infusion of the new and improved lymphocytes, followed by several doses of IL-2, a biologic that revs up the immune system. All told, I was in the hospital for three weeks. This trial was at the hospital where I had my lobectomy four years ago, before the recurrence that made me Stage IV.
The doctor told me not to expect too much from the first scan, but mine was terrific--the tumor shrank dramatically. The best thing about this treatment is that if it works, that's it--no more cancer treatments. That's the main reason I chose this trial over the others--which involved ongoing treatment with new drugs.
There are several ways to find clinical trials. Your oncologist might know of some. Lungevity provides a matching service. And Go2 Foundation can also help find suitable trials. Or you can do your own searches at clinicaltrials.gov. I read about my trial here on the forums, and it happened to be local (happily for me). Some of these trials have sites all over the country. Others are smaller and at fewer locations. Some trial sponsors will provide help with travel and lodging if it's far away.
So you're a ways off from having to look into that (although there are also trials for newly diagnosed who have not been treated), but it's good to have in the back of your mind the fact that there are options--often, many of them. My oncologist said there were literally hundreds of trials that i might qualify for, having progressed after first-line therapy. Incidentally, I have plain-vanilla adenocarcinoma with no targetable mutations.