LexieCat
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Posts posted by LexieCat
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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.
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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?
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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!
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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.
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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.
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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.
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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.
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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.
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Great to hear, Tomm! Keep it goin'!
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Ooh, I just had body work done on my car the week before I went into the hospital. The last time I went to Penn (for my Zometa infusion) I parked too close to one of those cement pillars in the parking garage and put a nice dent in my passenger-side front door. Most of the places I called couldn't get me in before July. The guy who does my detailing for me (a once-a-year indulgence) recommended this place he knew and they did an amazing job and had it done almost a week before my June 9 admission date. I'll def. be using them next time.
Sounds like a great line of work--no shortage of need!
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Hi, Ale! You sound terrific!
I've been having sort of a long slog recovering from the trial, but I woke up today feeling more energetic than I have for the past few weeks. Kinda like slowly coming back to life, ya know?
Yesterday I finally shaved the few hairs that were still clinging to my scalp, and that made me feel better, too. I hated looking like a badly-plucked chicken, but now my head is smooth and I have some comfy caps to wear as it starts to grow back. I really don't mind losing it (just hoping it re-grows the way it was).
So trade school to be a mechanic? That's awesome! I remember when I was 17 buying a book and teaching myself how to change my oil and spark plugs, set the timing, etc. Back in the days when computers didn't control everything, lol.
Proud of you, kiddo--rock on!
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Judy’s right—pay more attention to what the oncologist says than the radiology report. You can also always get a second opinion on treatment options. Hope your insurance comes through fast.
And thanks for the well-wishes for me. One of the research nurses put me in touch with another woman who is starting this same trial next week. We agreed to exchange numbers and finally connected today. We may be like two ships passing in the night—her arrival will pretty much coincide with my departure next week. But still, good to have a buddy to compare notes with. She was very interested in this group too, so I sent her a link to the forums.
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Ale, I always try to schedule my scans for the day before my visit (at a Penn Medicine location, when I was being treated there). Mainly because it’s impossible to glean from the radiology report exactly what is going on with your cancer. Radiologists can point out what they observe, but they aren’t cancer experts. Your oncologist will have to “translate” them for you and discuss treatment options.
I know if the report is there on the portal it’s hard not to look. But you can ask your doc either to hold them until they’ve been discussed with you or try to time your scans, as I did, to eliminate a long wait.
Try to cool your jets till you’ve seen the oncologist. And remember, there may be some clinical trials for which you’d be eligible. I’m smack dab in the middle of one right now (posting from hospital bed). So far the chemo to deplete my immune system has been a breeze—just a bit of swelling from all the fluids. Next week may be rougher because as soon as they infuse the new cells I’ll get several infusions of IL-2, which apparently makes a lot of the patients pretty darned sick. I will be in ICU for that part of it, just to be safe. If this doesn’t work for me, there are other treatments I can try, including other trials. So don’t give up hope.
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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/
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My updates (22 Years old, NSCLC)
in MEMBER UPDATES
Posted
Hi, Ale,
Sorry to hear things feel crappy for you right now. I've been having sort of a rough time, myself, recently--the cancer IS taking a toll on me and I'm about to begin a new clinical trial. I've been worrying about who can help me if I need it. I have the world's best neighbors who do a lot for me but they spend every winter (starting Jan. 1) in Florida. I finally reached out to family and we are slowly formulating a plan. My daughter will come out in mid-December and stay with me till sometime in March, after which my cousin has said she can come out to stay with me. Though I need to stay here as long as I'm in the trial, if it stops working or makes me too sick, we are formulating a plan for me to move back to Colorado (where my whole family is)--probably in an Assisted Living thing, at least until/unless my health improves.
I'm glad you are feeling well physically. And Lou's right, none of us deserves this disease--even me (longtime smoker). Many others smoked more and never get cancer. But I do understand getting down about things. All I can suggest is to reach out for whatever help you need. I felt a huge weight lift as I talked to various people willing to help. It's hard for me to do that--I've always been very independent and self-sufficient. But almost everyone eventually needs more help than they can conjure up with their own resources. And I'm finding that people are happy to feel they are helping.
Hang in there, kiddo. Will keep my fingers crossed for good scans for you.