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  1. That is sad news. I hope it was less distressing for her than it might have been if it had spread elsewhere. Once things settle down I hope you can begin to adapt to your loss and resume your own life. Best hopes, Craig
  2. Debbie, I am so sorry to hear of your loss, but as a stage IV cancer fighter I do understand his preferences as you described and it sounds like it was a good end though unexpectedly soon. Thank you for sharing your news. I wish you your own healing as you adapt to continuing on without him except in spirit. Best hopes, Craig
  3. Jackie (JocelynM), FYI, I'm still waiting to see published or presented results from the phase 1/phase2 trials of Talon's menadione (synthetic vitamin K3) lotion. The briefest of info is given here: http://www.talontx.com/pipeline.php?divid=trialsummary and the status of their development pipeline for this is graphically shown here: http://www.talontx.com/pipeline.php I've seen other clinical trials exist or existed for vitamin K1 (as found some foods) for EGFR inhibitor rash, but don't know their results. Per prior lab research, K3 is supposed to be much more potent at neutralizing EGFR inhibitors than K1, yet as a lotion it was hoped that too little would be absorbed to neutralize the Tarceva effect on the cancer inside the body. Apparently the research trials continue. Best hopes, Craig
  4. And so would every researcher in the world. They are trying. As far as I can see, cancer is complicated. It may be driven by one mutation but there's usually others that help it and hide it from natural defenses (like DNA repair or self-destruction, etc.). And animal cells are pretty adaptive already -- over millions(?) of years living cells have learned all sorts of adaptations and backup mechanisms for coping with changes in their environment, changes in available resources, and unfavorable environmental toxins or poisons. Unfortunately, cancer cells know these same adaptive tricks, too. Then you are a far better person than I. My mother would never have wanted me to sacrifice my career to help her fight against the cancer that took her life. My father and a local care managing service company working with her doctors meant she didn't need any other help. She didn't even have me take a brief "family leave." She preferred to just talk with us by phone and have us visit as often as we could when she could handle it a visit. (I have known a few good professionals in their 50's in whom a career lapse of a couple of years during a recession meant they could not find similar employment ever again; in a couple of cases they or their family never recovered from the financial hardship it led to. A leave of absence might be better than resigning, if possible. Of course, if jobs are more plentiful where you are for what you do, that might not be an issue.)Best hopes, Craig
  5. https://www.google.com/#q=FWIW I'd guess it's the 3rd most common abbreviation in email messages after FYI and BTW, and more common than IMHO (or IMO). Best hopes, Craig
  6. I'm still doing well. (No progression seen on last month's CT scan. Next one isn't for 3 more months unless I show signs suggesting a need to move up the date.)FWIW, I haven't said much lately on this discussion because I didn't have anything useful to add and I don't have experience with the stage of treatment your Mom is getting. I'm keeping an eye on the discussion, though. You've been in good hands and good company. Best hopes, Craig
  7. P.S. -- another way to try to determine the kind of primary is gene profiling, as described in this trial: http://jco.ascopubs.org/content/early/2 ... 12.43.3755 That describes a new tool used in that trial that enabled them to pick a specific cancer type in 98% of the cases. Whether or not they were correct isn't provable, but it did improve treatment outcomes so it probably was better than not knowing at all. Best hopes, Craig
  8. P.S. -- I never had a cough. Just a crackling sound when I lay down to sleep at first. Later it grew to be fluid that spilled up my windpipe when I bent over -- my only noticeable symptom. I didn't start coughing at all until after my bronchoscopy, and not even much then. Lucky for me, treatment has been able to relieve that for 15 months so far. Best hopes, Craig
  9. Wylie, Sorry to hear about your Dad. I can't make a valid guess as to which type of lung cancer. If I remember correctly, a long smoking history (esp. if he didn't quit long ago) does significantly increase the chances it could be small cell lung cancer, squamous cell lung cancer, or an adenocarcinoma with a not-so-useful KRAS driving mutation (as opposed to a more useful one), but there are some smokers who even have a rare very rare, usually-useful (for a number of months) ALK- or ROS1-driven adenocarcinoma (rare regardless of smoking status, and with 90% of it occurring in younger never-smokers). The type of lung cancer would be one of the first things the pathologists will try to determine once he's gotten a biopsy sample taken (and a biopsy is usually done ASAP within days of seeing there's a tumor in there, at least here in the USA). FYI, if they said his cancer was inoperable, that might be either because they've seen it spread away from the original site (i.e., it's migrating through the body or across the lungs) in which case they might call it Stage IV, or it might be in a place they can't usually eradicate it from (pleural lining, which would also make it be called Stage IV), or it might be in a location too dangerous to use surgery or radiation on (e.g., around the heart or aorta). Best hopes, Craig
  10. Thanks, Erika. The most common driving mutation for a smoker's lung adenocarcinoma is KRAS, so getting that tested could be one clue as to whether it is from the lung (although adenocarcinoma's from elsewhere can also be KRAS). It would be better, though, if it weren't the not-so-useful-yet KRAS-driven, because that would open up the possibility that the driving mutation might be a more useful one like EGFR. (ALK, ROS1 or RET might also have a chance, but those are much less likely in a smoker, though still possible.) There are other IHC (immunohistochemistry) tests that might give them a clue as to the source. I thought TTF1, CK7, and CK20 are the usual ones a lab would check to confirm whether it might be an adenocarcinoma from the lungs. Did they do those tests to help them decide? Here's a paper describing how such things (and others) are sometimes used: http://www.aaomp.org/annual-meeting/doc ... andout.pdf Best hopes, Craig
  11. Erika, I'm sorry to hear your Dad's situation, but glad you are reaching out to others. Do they know what specific type it is? Adenocarcinoma? Squamous cell? Large cell? Small cell? Best hopes, Craig
  12. Hospital or cancer center social workers tend to know the ins & outs of the available forms of assistance with the costs of cancer treatment. Is that service available in your area? You could also call your county government -- they sometimes have programs that fill a gap between state programs and Medicare/Medicaid. If you're willing to talk about it, how is the testing and treatment planning coming along? Have they determined the specific type of lung cancer? Adenocarcinoma? Squamous cell? Large cell? something else? (NSCLC is a pretty large category, and the specific type can change testing and treatment options.) Best hopes, Craig in PA
  13. Re: Lung transplants for lung cancer: I read up on discussions about lung transplant after hearing about the possibility in one case. Unfortunately, it isn't a reasonable option, except for a very lucky few. 1. If you have an early stage cancer that hasn't spread, your remaining lung capacity after surgery should be sufficient to survive a long time. If after surgery the cancer had silently already spread to the other lung (undetectably), replacing the lungs wouldn't help as described next: 2. If you have cancer that has already spread elsewhere, the cancer cells are presumed to be wandering about your body, so replacing lungs won't help because the cancer cells will just float back to the lungs and start the cancer again. Chemo sometimes eradicates such cancer, but the odds are too small to risk wasting a donor's lung vs. giving it to someone who has good odds of getting 20 years out of it. 3. There is one potential exception. The BAC (bronchioloalveolar carcinoma) subtype of adenocarcinoma often (not always) stays confined to the lungs and progresses slowly, so if the lungs are removed cancer might not re-seed the lungs so easily. From what I've read, the odds are about 50% that the cancer will return. That is not good enough for some lung transplant surgeons who would like the donor lungs to last many years in someone. From the point of view of the BAC patient, it's a "win-win" because if the BAC doesn't return they live years and even if it does return the BAC might progress so slowly that they might get as much as 4 years out of those lungs. Even so, I know someone who searched nationwide for a lung transplant surgeon who would was willing to do the procedure of his wife with BAC. He only found two (after screening dozens). Unfortunately, lung transplant surgery is pretty risky, and although her transplant was initially successful, she died a couple of days later. Someday when lungs can be grown from stem cells, we might have unlimited spare parts made to match our own tissues. (It's a shame that some politicians blocked government-sponsored stem cell research.) Then the problem is treating mets elsewhere, but in an ideal BAC case that shouldn't be an issue for years. There's also the possibility of a mechanical device that might be better than nothing, if it doesn't cause blood clots (strokes & heard attacks), e.g.,: http://news.cnet.com/8301-27083_3-20083 ... re-oxygen/ I sure wish they'd hurry up with that -- it could be a life-extender for people who's front-runner cancer issue was lung impairment. Best hopes, Craig
  14. FYI, I read somewhere a doctor wrote that the right amount of biopsy material to get these days is a "boatload." Obviously an exaggeration, but when I had my 2nd bronchoscopy biopsy, 24 samples were taken, which was 2 or 3 times as much as from the first. Best hopes, Craig
  15. Correct -- the Stage IV can be due to the cancer spreading to other parts of the lungs, i.e., not just near the original site. That is why I'm stage IV -- cancer was seen on CT scans in every lobe of both lungs (although just tiny spots in the left lung, but confirmed by a 2nd biopsy later). No cancer was seen elsewhere or in nodes. If it really is BAC, there's a fair chance that a PET scan would show nothing outside the lungs and would not show the cancer that looks like GGO (ground glass opacity) or haze except where it has consolidated into a mass. I say that because that was my situation, and it caused the local doctors to mistakenly assume I had no cancer beyond what they could see on the PET scan, i.e., early stage cancer and surgically operable. Fortunately, a 2nd opinion from more experienced university doctors read the CT correctly so I could stop the pointless surgery in the nick of time. My personal experience has been that for my mBAC (assuming it remains confined to the lung as it often does) PET isn't very useful; CT is the important one. If the cancer responds well to the chemo, that would be a wonderful thing. Chemo offers a chance of cure, however small those odds might be in stage IV lung cancer. Mucinous BAC, though, has a anecdotal reputation of being less responsive than average to chemo but there are enough exceptions (and no good statistical studies) to doubt that. My oncologist mentioned an mBAC patient of hers who did very well with Alimta for a while, for example. I recognize Alimta (premetrexed) and Cisplatin. That combo has higher-than-average odds of working well in never-smokers. I am not familiar with other supportive drugs that are given to control side-effects. The side-effects from the initial infusion or two might not be very difficult. They are likely to get stronger as the chemo has a cumulative effect. Hopefully that will give enough time There is enough research supporting the idea of treating with an EGFR inhibitor drug as the 1st line of treatment *if* it is known that a person's lung cancer is driven by an EGFR mutation (and not one of the already-known drug-resistant variants of EGFR). An EGFR inhibitor sometimes works in patients who don't have an EGFR mutation, but then the odds for chemo would be better than for the inhibitor drug, so chemo would be the better first option. Sometimes in the USA, when a patient needs to start treatments ASAP, they start chemo before they know the EGFR test result. If the test comes back positive for an EGFR mutation (and not a known-resistant variant) then the would either finish the chemo first or switch to the EGFR inhibitor and come back to that chemo later. (I think there's usually a preference to finish a line before moving on, on the same assumption as for antibiotics.) In Asia, the probabilities favor EGFR in never-smoking women so heavily that doctors might be inclined to assume EGFR until proven otherwise, and act accordingly, but I don't know. The data I know is East Asia and I've seen something similar for India to make me think EGFR was almost as common there, too. But if you Mom has been elsewhere, it's hard to know how whether being in a different cultural environment with different behaviors changes the odds or whether it might be driven by inherited genes. FYI, if it were me, and if I did have the EGFR mutation, I'd want to ask if I could get some kind of scan (or even an ordinary x-ray) to try to measure the effect of the chemo before starting an EGFR drug so I'd know if it might be worth going back to finish more of that chemo later. I do hope you find that she does have some kind of drug-targetable driving mutation (EGFR, ALK, ROS1, RET, ...?) that offers her an additional drug or track of experimental drugs that might have a good chance of extending her life. Best hopes, Craig ________ P.S. -- If you need research citations for anything I described, let me know. I'm just too tired right now -- need some sleep.
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