LexieCat

LOL, no matter what ever crappy thing happened to me, my mom's go-to response was: "It builds character." Yeah, ticked me off no end.

I don't think you can draw any conclusion from how long the scan takes. My latest scan (and I'm dealing with somewhat ambiguous results) was super fast. I've had some that seemed longer than others. Might just be a variation on which machine is used or who the tech is. But two weeks is a ridiculously long time to wait for results of your scan. Is there any way you could contact your oncologist and ask them to phone with the results sooner? On the off chance that there is something significant to discuss, that could wait till your appointment, but if there's nothing of any great significance, it would spare you a ton of stress to find out sooner. Welcome--glad you found us. You might want to introduce yourself in the newcomers' forum. As you can see, there isn't much action on this thread--the last post was two years ago.

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.

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!

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.

Yeah, I think it took a week or two for my approval. I just had to get them all the medical records, but it was pretty simple.

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.

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.

Great to hear, Tomm! Keep it goin'!

Terrific! I had a small complication with an air leak (had to be re-admitted for deflation), but otherwise my experience was similar to yours. Amazing, isn't it? Keep us posted after your appointment.

Hi, Sarah, and welcome. I'd suggest starting a new thread in the newcomers' forum--this thread is from 2007. In any event, I found my lobectomy via VATS one of the simplest surgeries I've ever had. Three tiny incisions and that's it. There is some pain, but I think I needed the heavy-duty pain meds for only a couple of days and then ibuprofen was plenty. She will cough a lot, which is encouraged because it helps clear the lungs. A recliner would be comfy to sleep in (unless, like me, you have cats that will climb all over you if you try). What I used (and lots of other people used, too) was a wedge pillow. It does help you sleep if your upper body can be a bit elevated. She should come through this with no problem. I was out with friends for dinner and a concert about a week after getting out of the hospital. One of our members, Lou, created a list of tips and tricks for recovery from lung surgery: https://forums.lungevity.org/topic/47249-thoracic-surgery-tips-and-tricks/

Hey, Diane, good to hear from you, and glad to hear you are doing OK. You'll never stop missing him, but I was eventually able to get to a point after losing my mom where the happy memories overcame much of the pain. Your continued input here is invaluable--when there are relatively few long-term survivors, those who have lost loved ones can help keep their voices alive to help others.

AstraZeneca offers financial assistance to patients who need it: https://www.tagrisso.com/after-surgery/support/financial.html

I'm not on Durva, but according to the website, it's for unresectable Stage III NSCLC after chemoradiation. So you wouldn't be a candidate (at least according to that) because of your stage and treatment.

Cali, this post is from 2006 and Linda hasn't posted since 2008, so I doubt she'll see this. You might want to introduce yourself on the new members forum, so we can be of maximum help to you.

Trust me, I found out the hard way.

Glad you're feeling a bit better. Don't forget to take a daily dose of Miralax if you're taking anti-nausea drugs regularly. Trust me, I learned the hard way that taking anti-nausea drugs before I start to feel queasy is a recipe for the most horrible, painful constipation imaginable. Taking the Miralax helped, as did cutting back on the anti-nausea meds until needed.

LOL, I'm just envisioning the puzzled look on the oncologist's face when somebody asks about the "Roscopal effect" and the ensuing argument when they ask if they meant "abscopal." You may have to register that trademark!

Thanks for sharing this, Ro. I've just had my first experience with post-chemo/immunotherapy progression (so far mild) and am looking into clinical trials. There are at least three worth consideration at this point, I think--each with a slightly different approach or twist. Two are where I'm currently being treated and the third is where I was first diagnosed (and had my lobectomy and subsequent second diagnosis of Stage IV). I'm waiting for someone there to get back to me to discuss. I've sort of skimmed over people's stories about clinical trials, focusing on what was most relevant for me at the time. Now I'm playing a bit of catch-up. Amazing how the perspective changes when something suddenly becomes deeply relevant to your life! Really happy you're having success with the radiation--hope it continues!

Yup, Bridget and Tom (and a few others here) were my heroes then and still are, today. I got to meet both of them (along with a few other folks from the forum) a few years ago for the HOPE conference in DC. Hopefully it won't be too long till we can have in-person (as opposed to virtual) conferences again. It really was fun putting faces with the names and hanging out together (as well as attending the interesting/informative sessions).

Hi there, Frank, and welcome! I'm still around, taking the scenic route. Unfortunately, after a very successful lobectomy, almost three years later the cancer returned elsewhere in my lung, and with a small metastasis to my sacrum. So it's Stage IV now, been through chemo and immunotherapy and after a bit of progression (growth of tumor), I'm starting a clinical trial soon that combines two immunotherapy drugs. That isn't by way of discouraging you--plenty of people have the lobectomy and never need any other treatment. But it does point up (a) the importance of continuing faithfully with followup exams and (b) knowing that every day new research and treatments are moving forward. I always say the secret to surviving lung cancer is to stay alive long enough for the next new advances. There are lots of tools in the toolbox, unlike only 5-10 years ago. One of our members, Lou, has complied a list of tips and tricks for surgery you might find helpful: https://forums.lungevity.org/topic/47249-thoracic-surgery-tips-and-tricks/

Hi again! I'm not on Durva (I'm on Keytruda, along with pemetrexed, as maintenance therapy), but just wanted to note that it's important to run any other medications or supplements by your oncologist. Not everything you read on the internet about potential interactions is reliable and your doctor knows your situation the best. It's still pretty early here in the US, but there should be some Durva folks along before too long. Glad to hear the side effects have been tolerable!