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LexieCat

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Everything posted by LexieCat

  1. Hi, Banna, I made it three years after my lobectomy before it came back. I assume you've been having scans every few months, right? Is this a nodule that's been there all along and is now 1 mm larger, or did it recently appear? 1 mm is pretty small--I think that amount of change could be due to the angle of the imaging. A PET CT will tell you a lot more. When my recurrence first appeared and they thought it was confined to the one lobe, my then-oncologist said it was possible I'd be a candidate for CyberKnife surgery (precision radiation). Unfortunately, the PET CT showed it had spread to a number of lymph nodes and a spot on my sacrum, making me Stage IV, so surgery was out. You'll know a lot more after the PET CT. Hang in there--no matter what, there are lots of treatment options.
  2. Hi, Cricket, and welcome! Well, for a 2 cm nodule, I would THINK (unless they found cancerous lymph nodes during biopsy or during a PET scan, that you would be a candidate for surgery. Did anyone talk to you about surgery? These days, VATS surgery to remove a lobe (lobectomy is usually the standard treatment for removing lung cancer surgically) is really a very simple procedure from the patient's point of view. Three tiny incisions in your side and back, and that's it. Usually 2-3 days in the hospital. I was out to dinner and a concert with friends a week after getting out of the hospital. What exact type of lung cancer did the biopsy show? There are several different types of non-small call lung cancer--adenocarcinoma, squamous cell, plus large cell and a few rarer types. You will want to be sure they send your tissue out for molecular testing. Even if you don't need any further treatment right now other than surgery, lung cancer does have a nasty habit of coming back. If the testing shows you have specific mutations, you might be eligible for targeted therapy (a pill) instead of chemo. Sorry to hear the kiddo and doggie have medical issues to deal with right now, but chances are any treatment for you will be a few weeks off. Glad you found us--this is a great place for information and support.
  3. I can't get any sound--it's claiming I have no audio output device (YouTube sound is just fine), then it keeps saying the meeting has timed out. I think I'll have to try to get the recordings later--this is just too frustrating to deal with.
  4. "Alternative" therapies imply something that is used in place of treatments approved by medical science. Some people integrate other kinds of treatments/therapies into their regular cancer treatment. Anything involving supplements should definitely be run by your oncologist--some actually work against cancer treatment. For instance, my oncologist told me to cut out fish oil and Vitamin C (which is suspected to enhance tumor growth). As far as vegan/vegetarian diets go, whatever you like, but I wouldn't count on its doing anything to fight cancer. Eat healthy, be sure you are getting enough calories, and you should be good in the diet department.
  5. Hi, Tunnel and welcome! Is your wife KarenR? I see you both posted for the first time today from Malden, MA. Glad you're here.
  6. Me, neither. It's one of those things that seems utterly unnecessary to actually name.
  7. Hi, Karen, and welcome. What lit up on your pet scan? Virtually ALL lung cancers are treatable--some types are harder to treat than others (e.g., small cell), but there are quite a few people here many years out from an advanced cancer, with no evidence of disease. You want to be sure your tissue samples are sent out for molecular testing. That will show whether you have a mutation that might be treatable with a pill rather than chemo or radiation. I know it's frustrating to be having all these tests and waiting for the results, but it's critical that the docs have as much info as possible before launching into a treatment plan. Glad you found us!
  8. LOL, not bad for an engineer!
  9. I found it helpful (I was on the same triplet) to keep a running calendar/diary of how I felt every day. I had relatively mild side effects--for me, the fatigue hit (and hit hard) around day 4 of each cycle. I'd feel wiped out for 2-3 days and then feel much better. Usually that's somewhat predictive of how each cycle will go. I also had mild edema (swollen feet/ankles) for the first few days after infusion but that generally went away quickly. I also had some "brain fog"--difficulty concentrating/ remembering stuff--but not too debilitating.
  10. 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.
  11. Here's a recent post from Rower Michelle on that particular book: https://forums.lungevity.org/topic/44842-durvalumab/?do=findComment&comment=441536 I think an overall healthy diet is always important when dealing with any serious disease, but I'm highly skeptical of claims that particular diets do much in the way of affecting the outcome.
  12. Looks to me like both of those trials require progression after first-line therapy. Glad she's home and feeling better.
  13. Hi, D, and welcome! Glad you've come out of "lurk mode"--this is, as you've seen, a great group and you'll find a lot of information and support here (and, believe it or not, a few laughs along the way). What kind of treatment(s) have you had and how are you doing now? I'm glad to hear you're adjusting and feeling more hopeful. There can be a lot of ups and downs along the way, even for long-term survivors. Few get there without a few detours here and there. Glad to have you aboard.
  14. 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.
  15. It's @Sandy N (thank you, recently fixed search function!):
  16. AstraZeneca offers financial assistance to patients who need it: https://www.tagrisso.com/after-surgery/support/financial.html
  17. 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!
  18. 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!
  19. 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!
  20. 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!
  21. 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.
  22. 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.
  23. 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.
  24. 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.
  25. 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!!
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