neilb

Let me just add a link to Dr. West's excellent post on Onctalk that summarizes the research on the relationship between Tarceva rash and effectiveness. http://onctalk.com/2006/11/25/is-rash-a ... nhibitors/

The rash does NOT mean that Tarceva is working. It means it's more likely that it's working than if you don't have the rash (i.e., it's a good sign). It's important to note that not everyone who gets the rash gets clinical benefit from Tarceva. Even more importantly, it should also be noted that some people who don't get the rash do get a response from Tarceva. It's certainly a sign either way (and severe rashes are associated with even better chances of Tarceva response), but it's not an absolute.--Neilb

I depends what kind of chemo you're talking about. For instance, people stay on Alimta for many cycles in some cases. While it's a little different from traditional chemo, some people also stay on Avastin until progression (after finishing treatment with a platinum-based doublet plus Avastin). Not sure if the Alimta comparison would work with Taxotere due to possible neuropathy issues. The 4-to-6 cycles limit applies more to first-line platinum-based doublets.--neilb

Ernie is wonderful, Ernie is great, and, most of all, Ernie is inspiring. Ernie's reports are full of information and tell you where to get more information. That said, if I were looking for instructions on how to fly a plane and got somewhat conflicting instructions from Ernie and Dr. West, my strong presumption would be to go with Ernie's thoughts--unless I had a great deal of evidence to the contrary.--Neil

Katie--As I indicated in my post: 1. I admire all of Christine's efforts on our behalf (and I admire yours as well). 2. The post she had on the lung cancer screening question was exemplary (I think the word I used was "perfect". I certainly understand the terms of service, etc. I think, though, that just as readers are responsible for their own care, posters should take responsibility for their own posts. Someone coming across that "eat healthy" post from Christine would have to assume it was her view. There is no hint whatsoever that it's an article from "Black News". If someone is going to post things of interest, it's reasonable for other people to offer their views on them. Three other things: 1. I don't care if a link is posted. On the other hand, identifying the source is pretty much always a good idea. Especially if the goal is to provide people with information and let them evaluate it for themselves, identifying the source is key. And the source probably likes that as well! 2. I agree that it's ludicrous to expect that anyone posting anything will be able to vouch for its truth. As you pointed out, we're generally not medical professionals. I don't think, though, that we want to post everything that might be of interest without any thought as to how plausible it might be. If this were a history board, I would not think you'd want people posting things that say, "Hitler never killed any Jews." It may be interesting, but it's not plausible. 3. I don't know Christine. I've already praised her. I've indicated that I have found many of her posts to be personally useful. I also know that someone I respect who does know Christine personally says she's a wonderful person. Viva Christine! Best, Neil

Christine--That's very reasonable, and I appreciate all of your efforts. I didn't think you were necessarily advocating this course, but sometimes it's hard to tell. One thing that might help is if, when you post something, you also post the source. That lets people evaluate it more easily (like you just did with your post on screening, which contained a source for the news article, and a source for the medical journal article it was derived from; that's perfect). Besides, the author of the article probably wants to get credit when you use her words anyway. Also, you need to remember that not everyone who reads here knows that they have responsibility, etc. Instead, what they see is Christine (who is a Moderator, whatever that is, they may say, but it sounds authoritative), is advocating this, and she's quoting a doctor who says things about how great this is. What's more, this Christine person also says that "These alternative methods are in most cases much more effective". That's what it looks like to an uninitiated observer. Would you feel comfortable if someone (regardless of their being responsible for their own treatment) stopped their chemotherapy because of this post? I'm sure that's not your intention. I'm sure your intention is to post relevant information to help people in this community. Let me say again that I appreciate that, and I know I have benefited from some of your posts in the past. It's frustrating to know that there isn't always something we can do to fight this awful disease, but I think it's really important that we try to get each other the best information. All my best to you!--Neil

One more thing and then I'll stop. It would be great if "carrot juice acts as an antidote to lung cancer." I could stop taking my Tarceva, get rid of the side effects, save money, and get cured. But, the EVIDENCE that is available suggests that beta carotene may actually promote lung cancer in smokers and ex-smokers. Here's an article summarizing that research. The actual research is readily available via Pubmed and other medical search engines. http://www.cancer-news-watch.com/2005/0 ... ng-cancer/ I'm not saying that people shouldn't take supplements. I take some. I'm certainly not saying that traditional medicine is all that there is. What I am saying, though, is that if you search online, you can find someone who says virtually anything and everything (try Googling the phrase "Hitler didn't kill any Jews"; you get six hits that try to sound authoritative). That doesn't make it true. Sometimes, that doesn't matter. When we start presenting as expertise stuff that actually may endanger people's treatments, I think that's a problem.--neilb

Here's the original: http://www.blacknews.com/pr/cleansing305.html And here's more from Dr. Murthy. She's pretty far out there, and she doesn't provide evidence that I can see. http://www.newindpress.com/NewsItems.as ... e=3&Title=

Christine--I'm assuming that this is a reprint from somewhere. If it's your original prose, I apologize for that assumption. Two quick points: 1. Does Dr. Murthy present ANY evidence to support those contentions? 2. As a complement to traditional treatment, at least one of the suggestions can be quite dangerous. Grapefruit products change the metabolism of some drugs (including Tarceva, for instance). Having grapefruit juice while taking Tarceva can result in an effectively larger dose, which could increase side effects like rash, diarrhea, and liver changes to an unacceptable level. That said, I'm sure I'm not the only one who can stand to reevaluate their diet. Less fast food, more of most of the stuff in your post would be good, I'm sure!--neilb

Hi, Patty! I'm sorry you have to be here, but I hope being here helps you. Good luck tomorrow! It sounds like you're doing all the right things, and you're in the right frame of mind. All we can do is the best we can. I would double-check that supplement list with Sloan-Kettering tomorrow. Indeed, they run a site that has information on supplements. That site is http://www.mskcc.org/mskcc/html/11570.cfm As you can see, it's a pretty complex issue. Evidence is mixed on nonexistent on some of these supplements, and the usefulness of others may depend upon the particular chemotherapy regime that you are doing. Best of luck to you!--Neil

So Dr. Rowen demonstrates (to some degree) that the study suffers from methodological flaws. Instead, he offers a prescription but no (zero) (Zilch) supporting evidence. I'm not saying he's not right. I am saying that if he wants to criticize the study for being badly designed, he should not then turn around and tell people what to do without ANY supporting evidence.--Neilb

I noticed that everyone who posted above me is not a patient but rather someone who lost a loved one to this awful disease. As a patient, I figure my ideal weight is "As high as possible". At least, that's what I tell myself when I reach for the second piece of cake!--Neilb

Hoax. http://www.snopes.com/crime/warnings/carjack.asp

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

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!).

Thanks, Wendy! I hope it's NOT the placebo that's affected his appetite!--Neil

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!).

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!

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

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

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!

On the other hand, if I'm reading things correctly, there does appear to be positive news about Alimta, Taxol, Tarceva, and Avastin, among other drugs (see also Gemzar, Oxaliplatin, and Axitinib). Much of the positive news is in second-line and later settings.

My read of the abstract is not nearly so positive as the press release. None of the 54 patients had a partial response and only 35% had stable disease. This doesn't compare very favorably with other second-line therapies. Here's the abstract: http://www.asco.org/portal/site/ASCO/me ... ctID=30343

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

Who here has taken Alimta and Avastin together (or knows someone who has)? And how have you done on that combination? Thanks!