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LexieCat

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Everything posted by LexieCat

  1. Hi, jen, and welcome. I'm from Colorado originally (Colorado Springs) but have been in NJ since 1981--still have a lot of family there in the Springs and Denver metro area. I generally get out there to visit at Christmas (except for this past one, of course). Sorry you're having to deal with this, but I'd advise ignoring any kind of "median life expectancy." There are people here 15-20 years out from an advanced cancer diagnosis and with all the new treatments coming out all the time, it's more and more possible for many lung cancers to be treated as any other chronic disease. I started off with a Stage Ib diagnosis four years ago, when I had a lobectomy. Last summer, almost exactly three years later, it recurred in my other lung and I'm now Stage IV. Originally I had one met to the sacrum. After a course of chemo and immunotherapy (I have no targetable mutations), to which I had an initially great response, the cancer started to progress and I'm now starting a clinical trial for a customized immunotherapy (TIL therapy). I've had two of the chemo drugs you're getting (carboplatin and Alimta), but I'm not that familiar with the third (Avastin)--there are probably others here who have had it. I didn't find the chemo to be that rough, but everyone reacts to it differently. If you haven't got one already, I highly recommend a port--your veins will thank you. Glad you found us--this is a great place for information and support.
  2. It's @Sandy N (thank you, recently fixed search function!):
  3. AstraZeneca offers financial assistance to patients who need it: https://www.tagrisso.com/after-surgery/support/financial.html
  4. LexieCat

    Hello

    I can relate to THAT. I had one other one--chemo seems to have cleared up an ugly skin condition on my face--I'm hoping it stays that way, now that I'm no longer on chemo!
  5. Hey, Babs, Trust me, I know how tough it can be to decide on courses of treatment. I was discouraged from opting for radiation as part of my first line treatment after my recurrence last year, for roughly the same reason--too much damage to other stuff (in my case, esophagus) due to the location of the tumor. I'd second Michelle's suggestion to explore possible other clinical trials--those that maybe your docs aren't aware of. Hang in there and keep us posted!
  6. LexieCat

    Hello

    Hi, Delia, and welcome from me, too. This is a great group--they've seen me through everything from my initial diagnosis and lobectomy in 2017 through my recurrence in the other lung last summer, progression of my cancer after an initial great response to chemo/immunotherapy, and where I am right now--just starting a clinical trial for a personalized TIL (tumor infiltrating lymphocytes) therapy. I'm fortunate that most of my family and friends have followed my lead, but as much as I love them, I'm VERY thankful I don't have to rely on them for support. They don't know what this is really like and yes, I spend a lot of time/energy trying to make them not worry. Glad you're here--hope both of us have success with our trials!
  7. TP53 is common in almost all cancers, and there's nothing to treat it, specifically. It's one of the few identifiable mutations I have, but it's not "actionable." My oncologist, who is up to his eyeballs in research, seemed to think the notion of targeting TP53 was pretty much pie-in-the-sky right now. If you have links to those trials I'd be interested in seeing them. Oh, and super glad to hear your MIL is feeling better!
  8. No idea, but when it's re-scanned in a few months it will definitely include the whole lung area. The chances that something important was missed this time, based on this tiny nodule alone, seem pretty slim.
  9. Sounds like pretty standard, to me, to follow and re-scan in six months. Let's not get ahead of yourself lining up oncologists. The majority of nodules are not cancer and that is a VERY small nodule. It could sit there for the rest of your life and never cause any problems. No clue about the lingula question--generally surgery involves lobectomy--removal of the entire lobe. And if they can do that with VATS I don't see why the location of the nodule would require an open surgery.
  10. I'm so sorry, Iris. I know how you feel--I had a recurrence three years after my lobectomy and when it came back, it was Stage IV. What kind of treatment did you have before? What is your stage now? Sending a hug--I have to go to bed now because I have to be up at 4 am to take my neighbor for hand surgery (he's driven me to the hospital a few times so happy to return the favor), but other members will be along soon and I'll be checking back in here tomorrow morning.
  11. I'm in Camden County (Gloucester Township) but RIGHT next to Washington Tp. in Gloucester County. Ever since my Stage IV diagnosis, I've been treated at Penn--they are FANTASTIC. The trial I'm doing right now is at MD Anderson at Cooper--which is where I had my original diagnosis, surgery, and followup (until the recurrence). Cooper was great for the original surgery, but once things became more complicated, I decided I preferred Penn. Unfortunately, my oncologist at Penn is leaving in July, so I'll have to find a new one anyway. Penn is an NIH/NCI Comprehensive Cancer Center--highly rated. The only reason I'm doing the trial at Cooper is that's where they are doing this particular trial. You know your kiddo better than any of us do, so you're in the best position to know how he'd react to news like this. You can reassure him that if you have to have the surgery it should be simple and with a speedy recovery. Depending on what they find when they do the pathology and testing, you might have adjuvant chemo, and you will be followed with scans every few months for a few years to make sure the cancer stays gone and, if there is a recurrence, to jump on it as soon as possible. As far as the surgery goes, unless I had other breathing/lung problems, I'd go with the lobectomy. Every expert I've ever heard has said it's far safer than removing only a portion of the lobe.
  12. My scans (after Stage IV diagnosis) were for chest plus abdomen/pelvis. I assume that's because I had an already-identified met on my sacrum, which they were following. I'm not sure having other areas scanned would provide more helpful information. If the cancer progresses, you're likely to see it on the already-identified areas first, I believe. IOW, I don't think it's likely you'd have some met turn up in your liver or adrenal glands or bone without seeing progression in your chest, first. I'm no expert and you should ask your doc, but that's my understanding. I always wanted a new PET-CT but my oncologist said there was no point. And sure enough, when the cancer progressed, a few weeks later there were a couple of new bone mets and spots on my liver, but those really weren't visible on the CT scans that showed the progression. They turned up when I had a PET-CT in connection with this trial I'm doing. Oh, and congrats on the great results so far--that's awesome!!
  13. Hi, Carrie, and welcome! I'm in NJ, too. I think everyone feels a mix of similar emotions when they first hear they have (or may have) lung cancer. The good news is that lung cancer today is far more treatable (and sometimes even curable) than it was only a few years ago. I had surgery four years ago for what was then a very early cancer. Unfortunately, lung cancer can be tricky and mine recurred about three years later in the other lung, a few lymph nodes, and a small spot of bone. I went through the first-line treatment for my type of cancer and after an initial good response, the cancer started to progress. I've opted to start a very exciting clinical trial using a new immunotherapy technique. For me, the best way to cope with the anxiety was to stay engaged here. These folks have seen me through everything, from my initial diagnosis four years ago to now. We have members here who are 15-20 years out from an advanced cancer diagnosis. We also have quite a few folks who had that initial surgery and who have had no recurrence. So there's tons of reasons to be hopeful. I take it the mass (assuming it's cancer) is not in a position that will permit a biopsy? When I had my surgery, the nodule was too small to biopsy, but both my pulmonologist and my surgeon felt its appearance was suspicious enough that, even with a negative biopsy, they'd want to remove it. Believe it or not, most lobectomies these days (removal of the affected lobe, which is standard procedure to reduce the likelihood of cancer cells being left behind) is pretty simple and "easy" as surgeries go. For a VATS lobectomy (video-assisted thoracic surgery) three tiny incisions in your side and back are all you need. Most hospital stays are a couple-three days. I was out with friends to a concert and dinner a week or so after I got out of the hospital. My C-section hurt worse, and longer, than my lobectomy. After my recovery, I noticed very little change in my breathing capacity. Even now, an oximeter reading will show my oxygen level at 97 or 98 percent.
  14. Oh, I know! But second-guessing can make you nuts. Lung cancer is very iffy from the get-go. There is a lot more they can do today than used to be possible, and sometimes that can make the second-guessing even worse. The more options you have, the more you think, "Would this be (or have been) better than what was done (or what I decided on before)?" I've learned to make a decision and go forward with it until/unless it no longer makes sense. And if the outcome isn't what I'd hoped for, oh well. None of us (including the docs) has a crystal ball. Every patient and every cancer is different and there's no way to know what will be the very best decision in every situation. Hang in there.
  15. When I was doing the online check-in for a recent appointment I was shocked to see "major depressive disorder" as something I was dealing with. I asked to have it removed, with the notation I had no idea where the "diagnosis" had come from and that I was NOT depressed. I just noticed it's still in there and that the entry was 2/22/21. Checking my calendar, that was the date of my telehealth visit with my PCP regarding the then-severe arthritis pain in my hip, which was making it difficult to walk and nearly impossible to climb stairs. I might have responded to a questionnaire, in connection with that visit, indicating that in the previous 7 days I'd felt depressed, but I've never felt worthless or hopeless, etc. And as soon as my severe pain started to subside, any feelings of being depressed went away. I think that, all things considered, my mental health is excellent, and I don't need a "major depressive disorder" diagnosis in my medical chart that is completely inaccurate. I sent a note to my PCP to ask her to correct it.
  16. In my own experience, unless I have some reason to ask to do something other than what the oncologist recommends, it's best to go with it. Nothing wrong with asking why it can't be done sooner, of course, but if you're given an explanation and don't have grounds for pushing it, I'd assume the oncologist knows what s/he is talking about.
  17. Check out the info on this page--it's Duke's financial assistance page: https://www.dukehealth.org/paying-for-care/financial-assistance
  18. You want to ask for comprehensive biomarker/genetic/molecular (these are all the same thing) testing to determine whether he has any mutations that might make him eligible for targeted therapy. That would mean taking a pill, rather than going through chemo or radiation--usually easier on the body and often highly effective. Not everyone has mutations, though (I don't), but there is still immunotherapy (which is sometimes combined with chemo and/or radiation). Also, there are a few different types of NSCLC. You want to find out whether it's adenocarcinoma (most common), squamous cell (less common but not really rare), or some other, rarer type (like large cell). They should already know that, based on the biopsy. What kind of treatment he gets will depend on the type, stage, his overall health, the existence of any relevant biomarkers. And yes, most places do follow a fairly standard protocol for first-line treatment. You might also ask if there are any clinical trials he might be eligible for.
  19. Hey, Ruth, glad you found your way over here. I never want to look at my scan reports till the doc is able to explain them to me--that's to avoid the kind of stress you experienced. Your oncologist sounds like kind of a jerk, though. If I were you, I'd call Duke and see what financial arrangements can be made. There is usually a social worker who can help with that stuff. I've had two partners who had serious health problems (cancer, heart attack/bypass, and liver failure), all of which was covered under the hospital's "charity care" (neither one of these guys had health insurance). One other thing to consider--Stage IV lung cancer patients are automatically eligible for Social Security Disability. After you've been disabled for 2 years, you are automatically eligible for Medicare, even if you are under 65. And feel free to rant away--it's one of the things we are here for!
  20. Good job! Yeah, I never really minded the infusions. There is a Starbucks attached to the treatment center and I'd always treat myself to a breakfast sandwich and a humongous cappuccino as a reward while I was in the chair. The nurses were always nice enough to zap anything I waned to have heated up.
  21. I just heard that term for the first time recently--from my physical therapist--in the context of prepping for my upcoming trial. I need to get my body moving on that treadmill!
  22. LexieCat

    A year

    Sending a hug. I lost my own mom to metastatic breast cancer over 30 years ago and I still miss her. I do enjoy dreaming about her--sometimes I even dream about the silly fights we had when I was a teenager--it makes me feel like we just had a visit. Your party sounds lovely--hope you and the rest of her family and friends can enjoy celebrating her.
  23. Hi, Priscilla, and welcome. I've been dealing with lung cancer for four years and I'd never heard the term "bronchioloalveolar carcinoma." I googled it and according to this article, anyway, the term is rarely used anymore and in fact it's just a form of adenocarcinoma. https://www.verywellhealth.com/what-is-bac-bronchioloalveolar-carcinoma-2249362 It seems to describe the location/appearance, rather than a separate type of cancer. Adenocarcinoma (which probably can't be confirmed until your lobectomy--only a biopsy can say for sure what type of cancer) is the most common kind of lung cancer--my surgeon called it "garden variety." There are a lot of good treatments available, and depending on the stage they give you, surgery MIGHT be the only treatment you need. I had a VATS lobectomy four years ago and its a SUPER simple procedure, as surgeries go. Three tiny incisions in your back/side and that's it. One of our members, Lou, put together this list of tips and tricks for surgery: https://forums.lungevity.org/topic/47249-thoracic-surgery-tips-and-tricks/. Seriously--my C-section hurt worse, and for longer, than my lung surgery. I noticed almost no change in my breathing capacity and I was out with friends to dinner and a concert a week after I was out of the hospital Even though the hope is that surgery (sometimes with adjuvant chemotherapy) will cure your lung cancer, this disease is very tricky. Mine recurred in the other lung three years later. So you do need to stay on top of post-surgery scans. That said, though, we have members here who are 15-20 years out from an ADVANCED lung cancer diagnosis. The stats you read on survival aren't particularly helpful in predicting how long anyone will survive after this thing. All the stats talk about 5-year survival rates, which means they are all counting people diagnosed more than five years ago. There is more research and new treatments all the time. More and more, even advanced lung cancer can be treated like any other chronic health problem (e.g., diabetes or heart disease). And for early-stage cancers, as I said, you might never need any other treatment. I understand it's especially scary when you have a young child, but there's a very good chance you will be around for years/decades to come. Glad you found us--this is a great place for information and support.
  24. Hi, Jim, just wanted to welcome you here. I have zero experience with (and not much more knowledge about) radiation as a treatment, so I'll leave that to Tom and others who know what they're talking about. This is a great place for information and support. Good luck wishes to your MIL.
  25. Thanks, hillham! Apologies for the abundance of side-conversations we've posted on your thread--didn't mean to hijack, but sometimes stuff happens, lol. Glad some of it has been helpful. I'm really excited about the trial. I always used to think clinical trials were for when you're truly at the end of your rope with no other options. The main reason I'm doing this one--right now--is that I'm strong/healthy enough overall to withstand what is a pretty intense treatment. If I waited, I might not be able to try it. Clinical trials give you a chance to try out the latest and greatest treatments before they are generally available. Of course, there are no guarantees (which is why they're TRIALS), but lung cancer is so iffy anyway, even with the well-established treatments, it feels less risky than it otherwise might. Hope you have a lot of success with your own treatment!
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