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Everything posted by LexieCat

  1. 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.
  2. 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.
  3. Hi, Mary Ann, That's gotta be discouraging. In addition to surgery/radiation, at this point I would want to discuss adjuvant chemo to get any other leftover cancer cells that might be floating around. Also, I'd want to be sure a sample of the tumor is sent out for molecular/genetic testing to see if you might be eligible for targeted therapy (a pill). Hang in there, and keep us posted.
  4. 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.
  5. LexieCat


    Yeah, some of us need to be more cautious than others. My doctor said that once my immune system had made a full recovery, I wouldn't need to take any more precautions than anyone else. Personally, I think it's nuts for ANYONE, vaccinated or not, to spend any length of time in a crowded indoor space without mask protocols--right now, at least.
  6. A CT scan tells you only so much. A PET CT is more accurate in terms of showing any metastasis. Certainly no enlarged nodes or visible lesions is better than having something obvious, but I had a tiny metastasis on my sacrum that "lit up" on the PET CT but could be seen only with a later MRI. You'll make yourself nuts trying to figure out what something very preliminary might mean. I say that as the voice of experience, lol. At most, early tests usually give hints of things that should be checked further.
  7. Looks like Kristin accidentally sent the wrong link--she sent a link for info about small cell lung cancer. I think this is the one she meant to send: https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/treatment-options/chemotherapy
  8. LexieCat


    Fortunately, it's pretty rare I have to take the Turnpike to get anywhere these days. Usually it would be to head up to North Jersey or NY. Most of my travel these days is to Phila or around South Jersey, so it's rare to take the Tpk.
  9. 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.
  10. Lisa, you're fortunate to be treated at such a cooperative facility. The place where I'm being followed for my trial will NOT use my port for anything but infusions (though I do now have an order from my doc allowing the port to be used for CT contrast--the lab will NOT use it for lab draws). And this is probably the biggest hospital in South Jersey and home to an MD Anderson Cancer Center. That's one reason I still have U. Penn on board for any oncology stuff. They use the port for labs, scans, and infusions. No big deal--it's a matter of course. SUPPOSEDLY (according to Cooper Hospital) there was a study of some kind showing an increased risk of infection when a port is used for anything but infusion. I ain't buying that. If it were that dangerous, Penn (a highly rated NCI Comprehensive Cancer Center) certainly wouldn't be doing it. Ordinary good practices by well-trained staff should make it perfectly safe. I don't know whether at some point I'll have mine removed (assuming all goes well with this trial). For now, I have to travel to Penn for accessing/flushing of the port, so I'm continuing to get infusions of Zometa every three months. My oncologist felt that was a safe interval.
  11. 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.
  12. Hi, Sandra, and welcome. I don't know about whether lung mets from colon cancer could be spiculated, but my first lung cancer diagnosis was for a spiculated nodule. The growth, plus the spiculation, make the nodule suspicious, but I would presume that if your oncologist can't say whether it's a metastasis, nobody here is going to be able to. I suspect the only way to tell for sure is by biopsy, if one is possible, or by a pathology exam after surgery, if not. Hopefully that will give you the answer.
  13. Great to hear, Tomm! Keep it goin'!
  14. LexieCat


    Yeah, Alanis Morissette was one of the ones I missed--I'd never seen her live, so that was a disappointment. Modest Mouse is the other one I missed, which was a couple days after my birthday, so that was disappointing, too, though I have seen them before. One of these shows was in NJ, the other in Philadelphia--both Live Nation, and neither requiring masks (though they bragged all over the website about the hand sanitizer they had available--that's nice, but masks/vaccines way more important to prevent spread).
  15. LexieCat


    I had three tickets for concerts this summer/fall--two of which I'd bought last year with the events rescheduled to August/September, and the third (for August) i bought a few months ago. Well, I missed the two for August--both venues "encouraged" sick people to stay home and "encouraged" masks and vaccines, but were not requiring/enforcing those. I wasn't taking any chances at a crowded, indoor venue under those conditions. The third concert (Clannad--a Celtic music group on its farewell tour) is at the Fillmore in Philadelphia at the end of September. The Fillmore is requiring masks AND proof of vaccination or negative COVID test within 72 hours. In addition to those requirements, Clannad fans are less likely to be drunk/high/rowdy than those attending a rock or punk concert--more likely, IOW, to be following the rules. So right now I THINK I will go, with the notion that I'll leave if people are ignoring the rules. I'd really like to see this group--I've never seen them live and this will be my only chance. Of course, this is subject to change if conditions warrant. Remember when having fun was less complicated?
  16. I did get a belated response via email from someone at Iovance--we are going to connect by phone. She apologized for not having someone there when I posted. Might be something to remind exhibitors about for next time--not to have a chat button unless someone is there (or at least have an autoresponse about how to connect).
  17. Glad to hear your mom is doing better! Stick around, and keep us posted.
  18. 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.
  19. LexieCat

    Need Tagrisso

    Right, we don't allow posting of personal information on the forums--they are public and for the safety of members (who might otherwise be targeted by spammers/scammers) we remove such info when posted. But Michelle is right, if you send a private message to someone, then any exchange of personal info is between those two people.
  20. Terrific news! Thanks for updating us.
  21. A lot of it was interesting/useful, once the technical glitches got fixed--they really need to post better instructions on how to access various things--some stuff was completely counterintuitive (e.g., how to "enter" any of the exhibit booths, and the Zoom links did not always appear when they should). My one other gripe is that some of the "exhibit booths" that had chat windows had no one staffing them. Not all of the booths had chat windows, but it seems like those that do, should have someone to interact with. I was hoping to chat with someone from Iovance and sent a couple chats to them early Friday and never got a response. Why have a chat window if there's no one from the sponsor there to respond?
  22. Trying to figure things out on your own based on a few lab results is an exercise in futility. I try not to look at most test results (e.g., CT scan reports) till my doctor can interpret them for me. It's too easy to get carried away trying to read the tea leaves. Others here want their test results immediately. Different strokes... Anyway, there are multitudes of conditions that could cause the lab results you mention. Let the docs earn their money and figure it out. Your biopsy results should be back soon.
  23. LexieCat


    Hi there, and welcome. I'm sorry about your son's diagnosis. No one wants to deal with lung cancer, obviously, but lung cancer isn't what it used to be. It's serious, but very treatable, and some Stage III cancers are even curable. And even for those who can't be cured, there are terrific new treatments that can result in long-term survival. We have several of those folks here on the forum. I assume you mean he has lung cancer with lymph node involvement. Do you know exactly what kind of lung cancer (there are a few) he has? What kind of treatment is being proposed? If possible, encourage him to ask that a sample of tissue be sent out for biomarker/genetic testing. That can show whether his cancer has certain mutations that respond to targeted therapy (a pill). Glad you found us--this is a great place for information and support.
  24. Good news! Presumably the PET also showed no signs of metastasis, which is a big deal. After your biopsy, if it does turn out to be positive, is there any possibility you could opt for Cyberknife (precision radiation) in lieu of more surgery? When my recurrence happened, my oncologist had suggested that as a possibility before the bone met was found. Depends on location and other factors, but I know I was concerned about losing more lung tissue if they tried surgery.
  25. Hi there, and welcome. First, no beating yourself up for smoking. If you're still smoking, obviously you should quit, but the rest is water under the bridge. I smoked about the same amount of time as you. But lots of smokers never get cancer and lots of non-smokers do. It's a moot point at this juncture. Second, the majority of lung nodules are not cancer. What is your doctor recommending? Unless any of the nodules are big enough to biopsy, the usual course is to re-scan in a few months and see if there are any significant changes. So don't get ahead of yourself. The good news is that lung cancer isn't what it used to be--there are amazing new treatments available all the time and we have quite a few long-term survivors here. Keep us posted and try not to get carried away with possibilities.
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