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Everything posted by recce101

  1. recce101

    NED, check in!

    I'm okay, and I'm sure Cathy and family are too — we're up here in the central valley at several hundred feet elevation. And I doubt if she was inclined any more than I was to drive down to the beach at 3 a.m. looking for damage. Actually, there were just a few places with any damage, and I find it strange that some weirdos felt shortchanged. Just 4 more WBR sessions to go, and actually feeling pretty good this morning. No headaches, just some fatigue. It will still be a while before it's time for another MRI to see how things are going. Aloha, Ned
  2. I imagine he secretly, or maybe not so secretly, hoped she would shower with him! Ned
  3. I really appreciate all the positive thoughts and good wishes, and I'll be sure to keep you updated on any side effects from the WBR (that's whole brain radiation, Eric) as well as what benefits I get later. Much Aloha, Ned
  4. I never thought I'd be writing this, but I am. Tuesday night I had some troubling symtoms which, when added to some other concerns I've had the past month, convinced me to go to the most fully equipped ER on this part of the island. Spent 6 hours there Wednesday, had an MRI that was clearly positive for brain mets, saw my medical onc Thursday morning, radiation onc that afternoon, and started WBR the same day. Did the second WBR session Friday, and there will be 8 more over the next week and a half. Still feeling pretty good. If you really want details, I started a thread at GRACE with a rather long post — at this point there are 33 messages in the thread spread across 3 pages: http://cancergrace.org/forums/index.php ... l#msg64692 Aloha for now, Ned
  5. recce101

    very scared

    Hi, welcome to LCSC. I know you don't want to hear any of this, but my guess is that even if a doctor thinks the hazy area is suspicious for cancer, it's probably much too early to confirm that with a biopsy, and you'll be in "watchful waiting" mode for what seems an eternity. That's one of the "bummers" aspects of this disease. But early stage lung cancer is generally curable, so contrast that with the fact that many or even most of the patients here had no clue there was anything wrong until our cancers were already at an an advanced/incurable (though manageable/treatable) stage. Bottom line, there's a good chance this is nothing, but even if it's something, it's not the end of the line. Color me blunt but wishing you the best along with much Aloha, Ned
  6. Hi, welcome to LCSC. As you may know, PCI is generally recommended for anyone with SCLC, and this article from an oncologist at GRACE (Global Resource for Advancing Cancer Education) explains why: http://cancergrace.org/lung/2010/08/07/ ... ng-cancer/ While you're at GRACE, you can browse the numerous articles and comments and forum threads about SCLC and PCI, and ask your own questions which are typically answered by a lung cancer specialist in less than 24 hours. Best wishes and Aloha, Ned
  7. ts said: Cathy, I definitely agree with that. I'll take it even further, and even though I can't prove it scientifically, say that being on a tolerable treatment and feeling relatively strong can be just as effective against the cancer as being on a rougher treatment and feeling lousy. For that reason, I've never hesitated to tell my onc I'd like to ease off a bit (either in dosage or schedule), and he's always accommodated my preferences. That approach has worked out well so far, and as they say, you can't argue with success. Here are a couple of rather long discussion threads between me and other patients/caregivers and some of the GRACE docs: http://cancergrace.org/forums/index.php ... l#msg18528 http://cancergrace.org/forums/index.php ... l#msg38110 And getting those calories in is important, even more important than a so-called "balanced" diet right now. Here's something I wrote back in 2007 about my eating difficulties while on Taxol: viewtopic.php?p=316878#p316878 I'm sending you a PM also. Aloha, Ned
  8. Hi, Helen, welcome to LCSC. You're certainly on the right track with a good attitude, prepared questions, notebook, info in your profile signature area, etc. When you find out the type and subtype of cancer and what treatments are being considered, post the details and you can get tips from the community which collectively has seen it all. Another great resource is cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Best wishes and Aloha, Ned
  9. Hi, Jean, welcome to LCSC. Plenty of people are surviving with cancer in both lungs, and I'm one of them. You can learn more than you ever wanted to know about my story by following the link at the bottom. What treatment has been recommended? Do you know the type of cancer — small cell lung cancer (SCLC) or non-small cell lung cancer (NSCLC)? And if the latter, do you know the subtype — adenocarcinoma (most common), squamous cell carcinoma (less common), or large cell carcinoma (not common)? The treatment is a bit different depending on the type. Lungevity/LCSC is terrific for support, coping tips, and similar help. For more "medical" information I suggest you visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Best wishes and Aloha, Ned
  10. Hi, Tony and Sue, welcome to LCSC. Key West Judy and I have been internet buddies since she first joined in late 2007, at which time I'd been the proud owner of a 3B diagnosis for 16 months. How's that for semantics? Anyway, my story (see the link below) and associated side-stories will give you far more reading than you ever thought you wanted. Best wishes and Aloha, Ned
  11. I missed the show too, but will be looking at it online. Looks like the unfair bias that we have discussed so often is slowly being chipped away, thanks to Katie and many other advocates. Ned
  12. Annette, you won't believe what I did. I started reading down the list, breaking up at every one, but then the last one didn't seem all that funny and I wondered where the punch line was. That's when I realized it was your signature!! Ned
  13. recce101

    David Fourer

    You might enjoy looking at David's online photo album: http://www.flickr.com/photos/dfourer/ Ned
  14. Chrissy, I haven't had radiation, but your description of esophagus pain sounds very much like what others have experienced while undergoing radiation to the upper chest. Your mom's radiation oncologist can prescribe a special mixture sometimes called "magic mouthwash" which one drinks shortly before mealtime and which makes eating more comfortable. Yes, it's a common problem, but it can be relieved at least to some degree. Good luck and Aloha, Ned
  15. It's good to hear froml you, Marianne. Keep those posts coming! Aloha, Ned
  16. Hi, Jerry, welcome to LCSC. I'm on my fourth line treatment, and this one has been more effective than either my second or third. So you never know. Aloha, Ned
  17. Hi, Lisa. Don't count your dad out just yet. You said his first-line chemo "pretty much wiped out" his lung cancer, and that's remarkable, certainly more than my treatments have done for me. But I'm still here and doing okay 4-1/2 years after diagnosis. This "one year" figure you were quoted is the median (mid point) survival of a very large group of patients with a similar diagnosis who started their treatment 10 or so years ago. Some were very sick at diagnosis and died shortly thereafter, and some lived many years. I would have been given the same one-year figure if I'd asked, but I didn't, because I'd been advised that these numbers have very little significance for any individual patient. Bone mets can be painful, but they don't have as much of an influence on a patient's longevity as mets to some other places in the body. Radiation can be effective in relieving the pain and stabilizing the bone to reduce the chance of fracture. What chemo combination did your dad have initially? And do you know what second-line chemo is now planned? I doubt if it's "stronger," but most likely it would be a different chemo, since probably his cancer has mutated enough to be resistant to the first drugs thrown at it. Now one more thing, use of the word "palliative." In cancer there are two categories of treatment — treatment with the intent to cure ("curative") and treatment with the intent to reduce symptoms ("palliative"). With our current medical capabilities, stage IV lung cancer (which your dad and I have) is not considered curable, so any treatment is by definition palliative. But that does not mean that the cancer cannot be managed/controlled for a long time and perhaps indefinitely. It mostly depends on how aggressive the cancer is, how well it responds to treatment, and other aspects of the patient's health. So palliative treatment is not giving up — far from it. If you haven't visited and registered at cancergrace.org (GRACE, Global Resource for Advancing Cancer Education), please do. It's a remarkable resource. Aloha, Ned
  18. Thanks so much, Nicole. One of the most remarkable stories I've read is here: viewtopic.php?p=330930#p330930 Ned
  19. Hi, Sue, welcome to LCSC. Has the daily pill Tarceva been mentioned as a possible therapy for your husband? Even if he's been tested for an EGFR mutation and found not to have one, Tarceva can still be quite beneficial for many patients. It kept me stable for the better part of 16 months, and I don't have the mutation. May I suggest that you visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Aloha, Ned
  20. recce101

    Latest scan

    I don't know why they don't display as clickable links, since they seem to be coded the same way as mine. Maybe you need [url]http://lungevity.org/.....etc......[/url] but mine doesn't have the url tags and works okay. But even if the links aren't clickable, they can always be copied and posted into the address bar of a new blank page or tab. Thanks for letting us make an example of you! Ned
  21. A very nice story and message! Thanks, Ann. Ned
  22. Hi, Chrissy, welcome to LCSC. Here's an article that will give you some excellent information on stage IIIa ("locally advanced") NSCLC: http://cancergrace.org/lung/2010/04/23/ ... y-ref-lib/ It should help you understand the options offered when you see your mom's oncologist after her PET scan. Many of us divide our time between LCSC (for support, coping tips, etc.) and GRACE (for more technical/medical information). It's by far the best combination anywhere on the web. Aloha, Ned
  23. recce101

    Latest scan

    That's great, Dawn! And I agree with ts that being able to refer others to your story would be very helpful. We want to make an "example" of you! Ned
  24. That's beautiful, Jean, and as you've already seen, it will help you in addition to helping the other person and family. My best, Ned
  25. Hi again, Cathy: There's a lot of overlap in these forums, but the My Story forum is intended as sort of a reference library of detailed accounts, generally chronological, updated periodically, of people's experiences through the various aspects of cancer diagnosis and treatment. Other good places to post, depending on the subject, are LC Survivors (general topics), NSCLC & Mesothelioma (specific issues concerning those diseases), Test Time/Updates, and Good News. For caregiver issues there's also Family Members/Caregivers. In truth, it doesn't really matter that much, since most members use the "View new posts" feature and will see every new post regardless of which forum it's in, and if it's clearly misplaced, a moderator can move a topic thread to a more appropriate forum. Sent you another PM this morning. Take care, Ned
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