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neilb

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Posts posted by neilb

  1. It means that you would have a 68% greater chance of developing lung cancer than someone in similar circumstances (they probably controlled for smoking history of the first-degree relatives). For instance, if (and I'm making this number up), a non-smoking woman has a 3% chance of ever developing lung cancer, your chances would be 68% greater than that, which be 3% + (68% of 3%). So, your chances would be 5% instead of 3%. I hope that reassures you some.--Neil

  2. No fevers for me in two months on Tarceva (but is it working?! We'll find out next week.). Meanwhile, all I can report is the standard rash, diarrhea, and food tasting a little funny.

    I've heard a rumor that Ernie has had no side effects on Tarceva or during chemo, so you can probably put him down as a no as well (sorry, Ernie, I couldn't resist making fun of your good fortune!).

  3. I've been on Tarceva for about 6 weeks now. I've noticed in the last 2-3 weeks that food is tasting kind of funny, and my appetite is down some. I knew this was a common effect of IV chemotherapy, but is this consistent with other people's experience? It seems that, in particular, fatty foods taste awful (this might not be a bad thing!).

  4. Here's a link to a more balanced (but still very positive) story on this study. http://www.msnbc.msn.com/id/19098606/

    Note that it raises some of the points that I raised earlier. Note also that while the difference between the placebo group and the "Calcium plus Vitamin D" group is large, the difference between the "Calcium Only" and "Calcium plus Vitamin D" groups is relatively small (23%) and not statistically significant (17 cases of cancer versus 13 could easily be due to chance, especially when there's nothing here about which kinds of cancer, etc.). Any effect here could easily be a calcium effect. And again, discounting the first year, unless it was part of the original research design, is NOT acceptable scientific practice.

    Again, thanks to Ernie for all his research!

  5. And Ernie, I certainly didn't mean to demean the incredibly hard work that you put it to research. You and I have exchanged emails before on this, and I think we're actually pretty close to agreement on supplements. My standard is whether there's some reasonable chance that the supplement is helpful and little chance that it's harmful (which may vary depending upon what conventional treatment you're doing). Others may have different standards. As I mentioned, I find the Chinese research on Astragalus during chemotherapy, as well as the Italian work on melatonin during chemotherapy as well as on its own, to be very compelling. I do think the web page that you linked to over-hyped the findings and was unjustly overly critical of the American Cancer Society.

    I was responding more to the claims in that piece and to the PET Scan claims than to your original post or even the fairly promising findings from Creighton. Many of us are in precarious situations, and I think it's important to keep hope alive but also to try to separate hype from reality. And that applies equally to traditional drugs and supplements.

    Again, I commend you on all the research that you do for all of us. I'm learning a lot from your series on supplements.--Neil

  6. I think Ernie continues to do good research on supplements. I tend to think that supplements are undervalued by traditional doctors. I think there are supplements that can be helpful in preventing and treating cancer. I also am not a big fan of capitalism. I think from reading not just the press release, and not just the propaganda at the link that Ernie gives us (not that I hold Ernie responsible for everything on that web site!!), but also the abstract of the journal article, that this adds to a growing literature that says that Vitamin D helps to prevent cancer. But:

    1. This particular study only included post-menopausal women. There might be many reasons that this effect might only apply to that group.

    2. Despite what the linked polemic says, we do not "know right now" that Vitamin D supplementation decreases cancer by 77%. The 77% is an estimate based on the sample in the study, and considering that there were only 50 cancers total, it is a pretty rough estimate. And, cutting out the first year after the fact is a little on the shady side (still 60% reduction would be nothing to sneeze at).

    3. The ACS did not say to ignore this study, as the link says. They said to be cautious about interpreting it. That's good advice.

    4. For those of who are on these boards because we already have lung cancer, there is nothing in this study to say that vitamin D improves survival, reduces tumors, etc. Prevention and treatment are two different things. As always, there is a question regarding how the supplement might interact with other treatments. I suspect that this might not be a problem (and I'm tempted to supplement slightly with Vitamin D), but you can never be sure. If you're already taking a multivitamin, and if you drink some milk, you're already getting around 600IU of Vitamin D in your diet. A little sunshine and you don't need supplements (and the supplement industry is evil capitalism, too!). I've been getting extra sunshine because Vitamin D might help (my view from reading earlier studies). Besides, I figure I'm not that worried about the long-term effects with respect to skin cancer. Recurrent lung cancer kind of changes one's view of long-term effects.

    5. The number one thing that the ACS says to do to prevent lung cancer is still the most effective. It's not smoking. And that seems anti-capitalist!

    6. I don't intend to get into a debate on this, but my read of the evidence on sugar causing cancer (and/or causing existing tumors to grow) is that this hypothesis is largely unproven. There are probably plenty of reasons to limit sugar in your diet, but that one is quite a stretch.

    7. Finally, if you really think that PET Scans are part of a plot to inject our tumors with sugar to make them grow, to require more drugs, you're entitled to that belief. But it's not exactly a secret that the glucose goes to the tumors. That's the whole point. Do you really think the amount of glucose you receive in a PET Scan is comparable to anyone's dietary sugar?

    I have lung cancer, I'm scared, I don't think traditional doctors have all the answers, I don't have time to wait for Phase III clinical trials of every possible treatment (and I think American doctors may be too quick to dismiss studies from other countries like those focusing on astragalus and melatonin), but it's also important not to be swayed by bad evidence that sounds good.

    I don't mean to be critical and there are many things I don't like about the pharmaceutical industry. At the same time, there are many unscrupulous people in the supplement industry as well. These are tough choices that we have to make, and everyone chooses differently. I'm glad Ernie has provided us with so much information (and I agree with many of his conclusions). Thanks!--Neil

  7. You obviously need another opinion, but you also need to ask the two oncologists some questions. The "local" doctor is suggesting an aggressive first-line approach. The Mt. Sinai doctor is suggesting an approach that is safer (probably with fewer side effects) but probably less likely to produce a response. Your dad needs to make a decision based on his physical condition, desires, etc., but I would also probably "confront" (not really the right word) the two oncologists with each other's recommendations. See if you can get them to say why they make the suggestions that they have.

    Good luck!

  8. Clinical study results say that, for those who get the rash (about 75%), the median time to onset of rash is 8 days. That means half get it earlier, and half (of those who get it), get it later. Almost all who get the rash get it within a month. Same results say median time to onset of diarrhea (among the 50% or so who get it) is 12 days. Nausea is supposed to be less of a problem with Tarceva than with IV Chemo, but it happens more often with Tarceva than with a placebo.

    I got the rash on day 8 (I guess I'm a pretty average guy), light diarrhea earlier than that (followed by a couple of awful bouts in week 3), and a touch of nausea in the mornings (my wife is amused at my having "morning sickness").

    As indicated above, though, your mileage may vary.--neilb

  9. As I understand it, that's exactly what they mean by second-line treatment. While Tarceva is technically only approved in the US for second (and later)-line treatment, it is my understanding that there are some oncologists who try it before traditional chemo with lifelong non-smokers who have adenocarcinoma (or at least with some subset of them, considerign other factors including sex, ethnicity, and current condition). Doctors have some flexibility in using drugs approved in one setting in a somewhat different setting. And I'm getting a sense from reading these boards that some oncologists may also try it instead of traditional chemo if they think that the patient is too weak for traditional chemo (I'm less certain about that).--Neil

  10. It would be better if a doctor answered, but I am on Tarceva and have looked into these questions quite a bit. On average, Tarceva appears to be less effective with current smokers than with lifelong non-smokers (with ex-smokers falling somewhere in the middle, depending in part upon how long since they stopped smoking). Even among smokers, though, Tarceva is effective in a small percentage of patients (in terms of shrinking tumors) and holds things steady in a somewhat larger percentage (though perhaps less than other second-line treatments).

    There appear to be two problems with Tarceva and smoking (though the experts are divided on this). First, smokers (for reasons I don't quite understand) eliminate Tarceva from the body more quickly than non-smokers (and thus get a lower effective dose). This would explain differences in effectiveness between current smokers (and very recent quitters) on the one hand, and lifelong non-smokers (and long-time quitters) on the other hand.

    The other issue with smoking and Tarceva is that non-smokers are more likely to have a mutation that is more responsive to Tarceva treatment (I think I haven't stated this exactly right), the EGFR mutation. They are also less likely to have a mutation (k-ras) that makes them unlikely to respond to Tarceva. This mutation issue appears to help explain why Tarceva is more effective in lifelong non-smokers than in both current and former smokers (though again the time since quitting may be a factor).

    There is nothing that prevents smokers from trying Tarceva. It's just that the evidence is that while it is, on average, as good as other second-line treatments, it appears to better (more likely to "work") than other second-line treatments for non-smokers, and worse (less likely to "work") than other second-line treatments for smokers.

    Hope this helps (and I hope I've got it right!).--neilb

  11. Thanks, everyone, for your responses. The dilemma is that we have to make decisions under uncertainty. If you thought a supplement had a 30-40% chance of being helpful, a 10% chance of being harmful, and a 50-60% chance of having no effect (all, of course, in combination with your standard treatment), would you take it? I think that's a realistic estimate based on what I've seen on melatonin, for instance. I could be wrong, and others are certainly going to evaluate the evidence differently. And each of us then has to decide what those odds mean for us. It's also tough for us to be caught between supplement purveyors or ideolgoues who tremendously overstate potential positive effects, and the more conservative US medical community that perhaps understates potential positive effects out of an overabudance of caution.

    The easy answer (and the one oncologists are most likely to offer) is "Wait for the results of clinical trials", but, like a lot of us, I have to make a decision in the near-term. So, I'm still confused. I'll talk to my oncologist, but, ultimately, I've got to make my own decisions.

    Thanks again to all!--Neil

  12. Are there any supplements that people know of where there is evidence that they interfere with Tarceva? I'm aware of the controversy about antioxidants and traditional chemotherapy, but I've seen little on antioxidants (or other supplements) and Tarceva. Thanks!--Neil

  13. I'm particularly interested in hearing about people who are taking Melatonion and Astragalus, where I think the evidence is that they may help and can't hurt (studies are almost universally positive but not well-done by US medical science protocols), as well as Shitake or Maitake mushroom mixtures where there seems to be little evidence (again, this is just one patient's read of things) that they hurt but maybe not much evidence that they help. And the one that has me in a quandry is Curcumin, where there seems to be some preliminary excitement, but it could also hurt, but I don't have time to wait for the clinical studies that come out in five years.

    I certainly agree that the idea that we should lump all supplements together doesn't make much sense.

  14. Ernie--Thanks. I'm not writing off Tarceva. Actually, it's the frontrunner right now. The remark about not being Asian or a woman was mostly a joke. Indeed, my review of the New England Journal of Medicine article on Tarceva suggests that the gender finding is largely statistical artifact (women with lung cancer are more likely to have adenocarcinoma and to have been lifelong nonsmokers than are men with lung cancer; once you control for those variables, the gender effect pretty much disappears). Unless my doctor gives me a really convincing argument otherwise, I'm likely to go with Tarceva.--Neil

  15. Unfortunately, I've progressed slightly after two cycles of Carboplatin, Docetaxel, and Velcade. I still have two enlarged lymph nodes in the mediastinum and one in the right, supraclavicular area (and the mediastinum ones are slightly larger). So, we're discontinuing this combination. So, what next?

    Alimta? Seems safe but unlikely to hit a home run?

    Tarceva? I do have adenocarcinoma, and I am a lifelong nonsmoker. I'm not a woman or Japanese, but you can't have everything! I'm leaning this way.

    I'm also being offered a clinical trial of Halichondrin B (also known as E7389). The little I've found about it suggests that researchers hold out high hopes for it, but I know very little.

    Any thoughts would be greatly appreciated. I'm a little frustrated in that I feel fine. If we didn't have pictures and a biopsy to prove otherwise, I'd think I was in great shape.--Neil

  16. I'm in my second cycle of chemo (docetaxel, Carboplatin, and Velcade) for recurrent adenocarcinoma. Didn't get my twice-a-week Velcade this week due to low white counts. The last couple of days, I've been having weakness in my left knee as well as some pain there. Common side effect?? Thanks to anyone who can provide info.--Neil

  17. I'm currently in the first cycle of Carboplatin/Taxatore/clinical trial of Velcade for recurrent NSCLC (originally 1A, but odds were not kind to me). I'm giving serious consideration to taking Astragalus as a supplement. My doctor seems largely indifferent on this question. I've read the meta-study that shows some promise (but questions the rigor of some of the Chinese studies). Do others have thoughts? Anyone taking Astragalus?

  18. I'm currently in the first cycle of Carboplatin/Taxatore/clinical trial of Velcade for recurrent NSCLC (originally 1A, but odds were not kind to me). I'm giving serious consideration to taking Astragalus as a supplement. My doctor seems largely indifferent on this question. I've read the meta-study that shows some promise (but questions the rigor of some of the Chinese studies). Do others have thoughts? Anyone taking Astragalus?

  19. I'm scheduled to begin chemotherapy on Tuesday. I've read lots of conflicting information on nutrition and exercise during chemotherapy. I'm wondering if anyone can point me to scientific studies that show what sorts of exercise regimens and diets provide the best chance of enhancing the efficacy of chemotherapy. Thanks!--Neil

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