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Everything posted by LexieCat

  1. Thanks for the PSA, Judy. I knew that, and it's one more reason I b*tch (lol, the forums keeps changing it to "witch," which makes no sense) when they refuse to access my port for blood draws or contrast. They claim there's heightened risk because the port goes straight to your heart, but going directly into a vein gets to the heart, anyway. To me, it's ridiculous to suffer through IVs when you've got a port and then you have to make a special trip, anyway, to flush the port. *smh* Penn seems to have no issue with it, but MD Anderson-Cooper does. I had to get my doc to write an order to
  2. Right--good to remember you can withdraw from a trial at any time. Best of luck--I hope it works great for you!
  3. LOL, when I was a kid, my mom cut her finger in the kitchen and had it bandaged up. One of the neighborhood kids asked what happened. She told him, and sadly said, "I'll never play the piano again." "Oh, no!" the kid said. My mom said, "It's OK, I was never able to play it before." I should ask my doc whether I'll be able to run 5 miles after treatment. And then inform him how great that is because I could never do it before!
  4. Great news--I think we ALL feel better when the treatment plan is in place. Keep us posted!
  5. Hey Kristin, I tried to register, and went through all the questions, but when it asked me to log in (re contact info, etc.) the page just redirected to the main page. I haven't yet gotten a confirmation email. Any way to check whether I've registered?
  6. Hi, Mike, and welcome from me, too. I'm also Stage IV but no targetable mutations. I had progression after a few months of chemo/immunotherapy and just started a clinical trial. You've gotten great info/advice above. The EGFR+ Tagrisso folks will have the knowledge most relevant to you, but the entire forum is a great place for knowledge and support. Glad you found us!
  7. Great news!! A second opinion never hurts, but it sounds like you've got some very good options.
  8. Yeah, I think a day is a tad pushy. A week, though, seems reasonable. What tests are they responsible for scheduling? Is she being seen at a cancer center? I believe MSK is in Middletown--or do they live somewhere else? I've been treated at two different cancer centers and they schedule everything for me--imaging, labs, other procedures. I like it because it's a lot less work for me. Occasionally I have to get pushy to get something done but for the most part they have been pretty prompt. I would presume they will do any molecular testing from the samples taken for the biopsy.
  9. Hi there, and welcome. Sounds to me like the docs are doing everything they need to do. Some people go through several weeks of testing before they have a treatment plan. They are apparently waiting for molecular testing which will determine whether she can have the "pill" treatment (therapy targeted for a specific mutation), rather than chemo and/or radiation. These targeted therapies can be very effective but some have to (or should) be given before any other kind of treatment. Not everyone has a targetable mutation, though. I don't. I started off with chemo/immunotherapy, which worked
  10. I dropped a note to the reporter, who apologized for how the article could be misinterpreted. Hey, I raised the awareness level of ONE person in the media!
  11. It does annoy me a bit, though, that the writer made it a point to identify Jim as a nonsmoker--as if that makes him a more worthy survivor. Not Jim's or Kristina's fault, of course--the writer is simply displaying that bias we've all seen before. Nobody wants, or deserves, lung cancer. Terrific, though, that they can raise awareness and money this way!
  12. Looks like the search function is FINALLY working again. Thank you!!
  13. Kristina is a member here--she posts under the name @TeamBurke! Her husband, Jim, is being treated at the Perelman Center (U. Penn, where I'm being treated--or was, up until this progression and trial). Thanks for sharing the article!
  14. You also might want to hook up with someone from palliative care--they often know all the tricks to dealing with side effects.
  15. Yup, I'm another one without any targetable mutations. Chemo/immunotherapy worked great for me initially, but as so often happens my cancer eventually became resistant to the drugs and started to progress. I'm starting a clinical trial this week--my doctor says there are literally hundreds for which I might be eligible. No guarantee this treatment will be successful, but if not, there are other trials/treatments. One other thing re medication costs. The drug companies generally provide financial assistance for patients who otherwise couldn't afford the drugs. But first you gotta get the
  16. More food for thought--maybe you've already read this one: https://jamanetwork.com/journals/jamaoncology/fullarticle/2774518.
  17. Remember, there's never any obligation to participate in any particular trial. The one I'm about to start is gonna be pretty brutal on my body, but if I didn't think I had a shot at a terrific outcome for myself, there's no way I'd put myself through that. If I were you, I'd ask the oncologist to spell out exactly how he thinks this could be of potential benefit for YOU. If you're not satisfied with the answer, then I think you want to carefully consider whether to do it. I'm in a couple of other studies--one to assess the benefits of looping in palliative care at the beginning of
  18. This answered a lot of questions I've had about the above. https://www.onclive.com/view/molecular-testing-results-are-critical-amid-an-expanding-targeted-therapy-paradigm-in-advanced-nsclc
  19. Hi, Viv, and welcome! I'm also Stage IV, but have no actionable mutations. After a good initial response to chemo/immunotherapy, my cancer started to progress and I'm starting a clinical trial this week (TIL therapy). It seems to me like this trial is comparing Tagrisso alone to Tagrisso plus Avastin, to see which is more effective. So to the extent the trial was "not really successful," it sounds like they didn't feel adding Avastin helped much. I kinda doubt they would continue to the next phase if there were any indication adding the Avastin to the treatment was in any way harmful to
  20. Friggin' engineers...
  21. Hi there, and welcome. What kind of side effects depends on the specific chemo you are getting and also on you. Not everyone with the same chemo has the same side effects. If you'd like to share more about what kind of treatment you're getting, some of us here might be familiar with that treatment and give you some thoughts about what you MIGHT experience. Incidentally re any kind of supplements (as you posted on the other thread) that, be sure to tell your oncologist or nurse practitioner about any kind of supplements you'd like to try. Some don't mix well with chemo.
  22. That's pretty much what I wasn't sure of--the extent to which targeted therapy or immunotherapy could potentially be curative. There's no guarantee of a "cure" even with a so-called curative course of treatment and there are people here 15-20 years out from an advanced lung cancer diagnosis with no evidence of disease (one has even been pronounced "cured" 17 years later!). So yeah, pretty confusing and at this juncture, the best course of treatment is, to some extent, a guess. Have you discussed surgery at all? Some Stage III cancers are operable. Even though I'm Stage IV, I h
  23. Hi there, and welcome from me, too! I think a second opinion before starting treatment is never a bad idea. I don't have any targetable mutations, so I'll let those with more knowledge/experience comment on that. Have they given you a stage? Has there been any discussion of surgery? Glad you found us, this is a great place for information and support.
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