neilb
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Posts posted by neilb
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Thanks to all of you for your support!--Neil
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... must come to an end. I went over my scan results with my oncologist yesterday. No new growths, no new enlarged nodes, but 3 of the 4 previously enlarged ones grew (one of them very substantially). There clearly has been disease progression, so Tarceva is done, and we're on to plan C. After brief discussion, it appears that plan C will be Alimta and Avastin, starting next week. I'm optimistic!--Neil
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Tarceva is indeed more likely to generate a response among lifelong nonsmoker, those with adenocarcinoma, and Asians (the gender issue is less clear, as women with lung cancer are more likely to be Asian, have adenocarcinoma, and be nonsmokers).
However, the evidence is also clear that Tarceva provides (on average) a survival benefit for people in every subgroup (even male, non-Asian, smokers with squamous cell). It certainly should be on the table.
Whether it's the best choice right now is something that you and your oncologist need to figure out. Good luck!--neilb
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Eccentric friends. Disclaimer: this is not a comment on the post that preceded it (even if people think it might be, and even if people think that might be an appropriate characterization).
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Thanks to everyone for your support!--Neil
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This has a happy ending, but I'm going to tell the whole story anyway. I went for my regular CT scan today, to be followed by a visit with the pulmonologist to see if we could figure out why I've had a persistent cough (didn't appear to be cancer-related). The pulmonologist came in, asked some questions, examined me, and then told me he thought the cough was due to GERD, which had come back due to my giving up Prilosec so as to give me the best shot at absorbing Tarceva.
However, he also told me this his eyeballing of my scan seemed to show significant progression of the cancer in lymph nodes in the chest. Since my oncologist was seeing patients just across the hall, he went over to consult with him. After an hour, the oncologist's resident came in, said he'd heard there was apparently significant progression, and that we needed to discuss the next treatment. I was, of course, ready to present my Cisplatin/Gemzar/Avastin plan with all of the rationale for it. He listened, rebutted some of it, and then came up with the closing arguments that "We don't do things like this outside of a clinical trial, it's not good for advancing science to do one-person clinical trials, and (the topper!), I can't imagine your insurance company would pay for that." He told me my main options were Alimta (the only FDA-approved treatment I haven't had) or a clinical trial (and he suggested the latter might make more sense since there was something to be said for a more aggressive treatment in my situation). He then when to find his boss.
When the two of them returned, the oncologist threw my written argument (I'd sketched it out in the hour I had waited) on the desk, and said, "Why would you want me to put you on this dangerous combination of drugs when you're stable?" I was flabbergasted. He told me that he and the resident had just measured everything out, and that had then confirmed their measurements with the independent findings of the radiologist. Everything was stable, except that an area of ground glass opacity in the right upper lobe had grown from 5mm in August to 7 mm today. We decided I could live with that, cancelled next week's appointment to get the results, and we will rescan in mid-January.
In the car on the way home, it suddenly hit me that the 5mm/7mm thing wasn't the whole picture. It was 5mm in August and thought to be probably inflammation. It was 10 mm in September and thought to be maybe inflammation, maybe metastatic. Thus, it actually shrunk from September!
Sorry for the long-winded story. It was quite a roller-coaster day.--Neil
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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.
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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
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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
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Dollfinn--Good luck with the scan! Please help me, though. What's an "anti-neo"? That's a new one on me.--Neilb
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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
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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
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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
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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
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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.
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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
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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
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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
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My understanding from another quick email sent by Welthy from her brother's place is that they ARE back home. She was just at brother's house to return a generator and zip off a few emails. Their power is back on, and they are at home (but without Internet and cable--no Cubs!).
Hope everyone else in the Chicago area did OK.--Neilb
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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
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SUV (standardized uptake value, I believe, but I'm not positive) is also dependent upon the size of the nodule (not sure if this applies to lymph nodes as well). For instance, an SUV of 2 might not be terribly concerning for a 3 cm nodule, but it would still be suspicious for cancer in a 1 cm nodule. Many of the false negatives from PET are small nodules. Again, not sure how this applies to lymph nodes. Supposedly, while we patients are addicted to numbers, many radiologists who specialize in PET scans are swayed much more by the pictures (what "lights up" and how it looks). And, as others have noted, in any case, PET often can't differentiate between cancer and inflammation or infection.--neilb
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Ernie--Good luck with the Avastin! It sounds like you've got a winning combination there!
On the insurance, whether they pay for "off-label" use of a drug (which is what they call it when an approved drug is used in a setting other than the one for which it has been approved) varies tremendously from one insurance to another. Technically, I think you've had off-label situations twice now. When you had chemo and Tarceva at the same time at the start, Tarceva is not approved for use in a first-line setting. And, now, I'm pretty sure that the Carboplatin doublet (and Avastin for that matter) are not FDA-approved except in a first-line setting. Obviously, in both cases, your treatment made sense. From what I've gathered from talking to people, the better insurance companies will cover a treatment if the doctor can make the case that it's the right treatment (even if it's not strictly approved in that setting).
Again, glad to hear that things are going so well for you. And glad you have a good insurance company! Keep up the good work!!--neilb
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Oysters? No side effects? Stop, Ernie, my wife is going to read this and wonder why I keep telling her I can't wash dishes and clean toilets due to side effects! You're giving me a bad name (and my name wasn't so good to start with!), and now my wife and kids are going to think I'm a wimp, too!
Glad to hear this has gone so well for you. Best of luck!
--Neil
tarceva
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Don--Sorry to hear that. Good luck with Tarceva. I had heard the same explanation that Cat reported. Go get'em!--Neil