The Colon Club

Pyro70 wrote:You also claim that Japanese trials are far superior to US trials.

I literally said:

rp1954 wrote:There are a lot of things you don't understand about Matsumoto (2002) that make it a lot tighter than most western phase 2 trials.

You're still not reading carefully, your negativity expands and fallaciously generalizes off my very limited statement. One Japanese trial and its paper, Matsumoto (2002), compared to sloppier trials. For example, Matsumoto (2002) had no washouts and dropouts the way many trials do; Matsumoto is tighter on staging, 2-3 vs NZ's 0-4, and better matched treatment to stage and correlated biology. Matsumoto was more careful about nailing down the sialyl Lewis X variable with three CD15s mabs; look how Fig 3C's results for sialyl Lewis X with the FH6 mab would easily help reproduce your NZ trial's less successful results. Nothing magical there.

Pyro70 wrote:You’ve demonstrated a classic example here: you are picking and choosing which trials/data you’ll listen to.

You're projecting. I'm pretty good at finding discrepancies and adjusting better for the differences in the analysis of all data. I'll watch your NZ example carefuly, but you need the full reports and raw data to compare and adjust with further against all the cimetidine trials' data - it is you and your NZ abstract that dodges the details, pretest and post - I don't have your NZ trial's papers and details. One difference is that I pay a lot of attention to factors to make something work, not some goof's quick shake and bake where everybody then died of ptomaine poisoning. In the cases, if NZ has different biology, say due to Western 2010s diet vs Japan 80s diet, or something else like techniques, I'd look for extra data, detail, not just shrug and toss the whole subject out. Or I'd try to find extra oomph to try to make it work in real life, not just sandbag it with a poor imitation or an extra defect.
I don't want to over rely on optimistic data, either. I'm sort of 3rd generation on CRC, ya know, it could be me.

Again, if you can get both reports and datasets for this NZ trial, I'm interested.

rp1954 wrote:

Pyro70 wrote:You also claim that Japanese trials are far superior to US trials.

I literally said:

rp1954 wrote:There are a lot of things you don't understand about Matsumoto (2002) that make it a lot tighter than most western phase 2 trials.

You're still not reading carefully, your negativity expands and fallaciously generalizes off my very limited statement. One Japanese trial and its paper, Matsumoto (2002), compared to sloppier trials. For example, Matsumoto (2002) had no washouts and dropouts the way many trials do; Matsumoto is tighter on staging, 2-3 vs NZ's 0-4, and better matched treatment to stage and correlated biology. Matsumoto was more careful about nailing down the sialyl Lewis X variable with three CD15s mabs; look how Fig 3C's results for sialyl Lewis X with the FH6 mab would easily help reproduce your NZ trial's less successful results. Nothing magical there.

Pyro70 wrote:You’ve demonstrated a classic example here: you are picking and choosing which trials/data you’ll listen to.

You're projecting. I'm pretty good at finding discrepancies and adjusting better for the differences in the analysis of all data. I'll watch your NZ example carefuly, but you need the full reports and raw data to compare and adjust with further against all the cimetidine trials' data - it is you and your NZ abstract that dodges the details, pretest and post - I don't have your NZ trial's papers and details. One difference is that I pay a lot of attention to factors to make something work, not some goof's quick shake and bake where everybody then died of ptomaine poisoning. In the cases, if NZ has different biology, say due to Western 2010s diet vs Japan 80s diet, or something else like techniques, I'd look for extra data, detail, not just shrug and toss the whole subject out. Or I'd try to find extra oomph to try to make it work in real life, not just sandbag it with a poor imitation or an extra defect.
I don't want to over rely on optimistic data, either. I'm sort of 3rd generation on CRC, ya know, it could be me.

Again, if you can get both reports and datasets for this NZ trial, I'm interested.

Youre the one promoting CIM as a cancer cure. The burden of proof is on you. If you don’t have direct comparison showing superiority to FOLFOX (which you do not), then it would be great if you stop trying to mislead people with actual cancer to pursue unproven therapies.


Youre the one promoting CIM, you should be all about getting the new CIM data - it’s not on me. I have no need to chase down something already looked at by actual cancer researchers and deemed not useful/inferior. The CIM data from your trials was very weak for a number of reasons, and only maybe shows a signal. With the NZ trial it seems this was a false signal. Welcome to real science/medicine. You have to follow the data, not magical thinking.

So rp1954 has kept his wife alive for 8 years using "magical thinking"?... A person would have to be a "quack" to think magic would work.

Pyro70 wrote:If you don’t have direct comparison showing superiority to FOLFOX (which you do not), then it would be great if you stop trying to mislead people with actual cancer to pursue unproven therapies.

Like I said, metronomic 5FU+fully CA199+CSLEX1 targeted cimetidine achieved 100% survival at 5 years, but Matsumoto's (2002) formal significance marks are in the 10 year survival data. I'm not sure how Folfox can beat 100%, but if you ask a pharma rep, maybe they can help you do better. They get paid handsomely for that sort of thing ...

Youre the one promoting CIM, you should be all about getting the new CIM data - it’s not on me.

It's your misinterpreted "weapon" whose full paper(s) doesn't seem to be published in even a 3rd rate journal. I'm not in any rush right now, nor do I see much new, useful information in any event (I doubt my wife will ever do Folfox, Folfiri or cyclic Xeloda and these people don't appear to know what they are doing to maximize CIM survival or signal).

… something already looked at by actual cancer researchers and deemed not useful/inferior.

Good luck. We're more comfortable to check and think for ourselves.

With the NZ trial it seems this was a false signal.

Wrong. Even this small "trial of shortcomings" that did not remotely reach significance is still roughly "consistent with" prior results in Redu's review and a targeted cimetidine hypothesis despite its likely or obvious warts and shortcomings that dilute or detract. Here's your NZ trial's statement that counts most, despite a lot of problems:
... those with sLe Ag in > 5% of tumour cells ( [CIM] 80.0% and [placebo] 68.6% respectively, HR 0.63, p = 0.28)
That's still better than many cancer drugs that cancer patients have paid millions and billions of dollars for.

You have to follow the data.

I do, very much. I just am not as tx inefficient or unread on CRC options as you.

"Youre [sic.] the one promoting CIM as a cancer cure" is a very misleading statement. rp1954 has never "promot[ed] CIM as a cancer cure" in the sense that CIM, and CIM alone, can "cure" cancer.

Here are a few articles to chew on:

"Cimetidine increases survival of colorectal cancer patients with high levels of sialyl Lewis-X and sialyl Lewis-A epitope expression on tumour cells", British Journal of Cancer (2002) 86, 161 – 167

"Cimetidine Inhibits Cancer Cell Adhesion to Endothelial Cells and Prevents Metastasis by Blocking E-selectin Expression", CANCER RESEARCH 60, 3978–3984, July 15, 2000

"Cimetidine Induces Interleukin-18 Production through H2-Agonist Activity in Monocytes", MOLECULAR PHARMACOLOGY Vol. 70, No. 2, p 450 (2006)

Let’s just summarize here:

You have in numerous cases extolled the benefits of CIM here and in other threads said it “knocks the socks of FOLFOX”. When pressed for comparison data to FOLFOX it doesn’t exist. You think because in a very small adjuvant trial for a subset of patients they reached 100% survival that this somehow means the agent is better than FOLFOX. Everyone knows that in the adjuvant setting surgery is far more important than medical treatment. Most likely these patients were “cured” by surgery not CIM. You could see the same thing happen in a small FOLFOX trial, but you won’t because no one looks at small data sets that are potentially misleading for FOLOX anymore. You also point to one very small trial as “proof” to an agent’s efficacy, but ignore another trial (or weren’t aware of) that can be found with a 2 minute google search. Then you say you need to “educate” oncologist on things like CIM therapy and are shocked that they aren’t aware of it. Yes, they likely aren’t aware of it because there is no solid evidence of efficacy. It’s not as simple as using a single small trial to guide decisions. That’s why there are guidelines to help make sense of various trial outcomes and identify the strongest / sufficient data.

You also should consider taking a statistics class. It seems to me you don’t really know what “reaching significance” means. A little FYI, having better outcomes in the experimental arm with a p value >0.05 means exactly nothing - it’s just noise. Adding more people to the study won’t help either if there isn’t an actual signal.

But whatever, it really isn’t worth my time discussing with you because you seem hell bent on promoting weak/junk science. It’s a shame though, because inevitably some actual patient will be led astray and likely harmed (medically or financially) by your commentary. Your support for the Swiss immune treatment that started this thread is another example of offering your support for a treatment without any evidence of efficacy.


P.s. calling attention to 100% success for CIM treatment in a subset of patients is kind of like saying cim is a “cancer cure”. But if you want to say I misrepresented your statement, I’ll give you that point.

martd wrote:So rp1954 has kept his wife alive for 8 years using "magical thinking"?... A person would have to be a "quack" to think magic would work.

I’m glad his wife is alive and doing well as he says. But there is no magic. However, there is chance. That’s why we use statistics, to understand what is just chance/luck and what is a signal. No offense, but was this serious or are you being sarcastic?

"Your support for the Swiss immune treatment that started this thread..." is again a misleading statement about rp1954. "Support" -- what the heck does THAT mean? Take my own interest in the Swiss treatment, for example, I am interested in learning more about it, discussing the research it is based on, and the like. Being open-minded about it, giving it a chance to be evaluated by us forum folk, does not constitute "support" in the sense that anyone is saying, SURE, GO AHEAD, GO TO SWITZERLAND AND SPEND MONEY TO HAVE THIS TREATMENT BECAUSE, WELL, I SUPPORT IT. Come on. You talk about being precise and logical in your attacks on rp1954's opinions about ADAPT and other protocols (obviously paraphrasing), but don't have the decency to employ same. Give it a rest.

mpbser wrote:"Your support for the Swiss immune treatment that started this thread..." is again a misleading statement about rp1954. "Support" -- what the heck does THAT mean? Take my own interest in the Swiss treatment, for example, I am interested in learning more about it, discussing the research it is based on, and the like. Being open-minded about it, giving it a chance to be evaluated by us forum folk, does not constitute "support" in the sense that anyone is saying, SURE, GO AHEAD, GO TO SWITZERLAND AND SPEND MONEY TO HAVE THIS TREATMENT BECAUSE, WELL, I SUPPORT IT. Come on. You talk about being precise and logical in your attacks on rp1954's opinions about ADAPT and other protocols (obviously paraphrasing), but don't have the decency to employ same. Give it a rest.

In his very first post of this thread, Rp “supported” Swiss Immunotherapy by saying it is worthy of further research with no caveats of it quite likely being a scam. Obviously I was paraphrasing. And I’m much more concerned about being precise and statistically accurate when discussing data and it’s meaning/implications than I am when paraphrasing discussions that can be reviewed a few posts up in the post.

As an observer to this exchange, I have to say that I find it very valuable. So frankly I'm disheartened by the fact that two obviously knowledgeable people aren't able to have the debate without accusations / attacks, etc.

Honestly, I've seen many posts from rp1954 that have made me worry that I was missing something that I ought to know or be doing - or honestly, that I was just stupid. I really appreciated Pyro pushing on this as I am now getting a lot more detail about how rp1954 made the decisions he did and why.

I feel like every few days I read another article about an alternative approach that is "working." I am not a scientist, so I struggle to figure out what to pay attention to and how to evaluate with a critical eye. I do think that there are treatment options in other countries that seem to have been proven effective and yet aren't being actively embraced in the US. I worry that there are just as many "cancer cures" out there that aren't nearly as promising as they might lead one to believe. And I don't have confidence that I would recognize one from the other.

I work in advertising; I know all too well how to take a single data point and build a claim around it - or how to use words to imply one thing but mean another! ("Chocolatey" virtually guarantees there will be no chocolate in what you're about to eat.)

Likewise, I believe that the Chinese supplements that I took helped my response to chemotherapy, and I would be the first to endorse those - but I have no way of knowing if I would have been just as successful without them! Or, even if they helped me, if they would help everyone. But believing they helped me has made me a strong advocate, without any "real" data to support my advocacy - save my own result and that of another stage 4 patient who recommended this TCM practioner to me.

I am sure that I struggle with confirmation bias - meaning, I tend to look more favorably on data that supports what I already believe and discount that which does not. We should probably all be wary of that natural human tendency as it happens all the time, and in all lines of work.

At any rate, I wanted to thank both Pyro and rp1954 for continually engaging in debate. It may not be so pleasant for you personally, but please know it is of value to patients like me as we try to sort out what's real and what's not!

martd wrote:So rp1954 has kept his wife alive for 8 years using "magical thinking"?... A person would have to be a "quack" to think magic would work.

This is what concerns me in this debate. Carers are being held up as the lead clinician in their relatives care . From what I know all have a medical team involved and have participated in chemotherapy as a treatment . For the sake of balance that should be acknowledged.

Any scientist /medic is required to substantiate their research prior to putting it into practice , seems fair to share that responsibility around .

Stu

ginabeewell wrote:.
Honestly, I've seen many posts from rp1954 that have made me worry that I was missing something that I ought to know or be doing - or honestly, that I was just stupid.

I’m afraid many on this forum have felt the same. Honestly, when I first read RP’s posts I too thought I was missing something until I researched the topic.

I’ll be the first to admit, ever since my diagnosis and being inundated with countless alternative/bs cancer treatments I have a visceral reaction to any treatments that don’t have sufficient supporting evidence.

Too many people prey on cancer patients and it’s understandably difficult for patients to separate what’s real and what’s not. Our medical teams are also stretched thin, and don’t have the capacity to explain to patients why alternative medicine remain “alternative” and isn’t medicine.

I have been dealing with health issues since my university forced me to get a MMR vaccine in 1990. It's a very long story, but if I had only listened to my doctors' instructions over the years, I would be long dead by now. 100%. I've written more about this on other threads, so I won't belabor the point.

I will say, however, that I am absolutely certain that supplementation will save my husband's life (unless he ends up counteracting all the good from the supplements with excessively dangerous diet and drinking, but time will tell). Why? The typical "medicine" his doctors are providing in terms of surgery and chemo will do a phenomenal job of killing all the expressing/active cancer cells but these do not address the problem of cancer's evasiveness. So, it is imperative that during the time following the completion of chemo, should there be any errant "cancer stem cells" (disseminated tumor cells that have gone quiescent), we will "kill" them upon their re-emergence with DNA correcting chlorophyll and other supplements. None of his doctors can be of ANY help in this department and we MUST take matters into our own - "non-scientific" - hands.

As viscerally distasteful as you find "alternative medicine [that] remain 'alternative' and isn’t medicine," I find equally, if not more distasteful, the discouragement in the promotion that people should pursue only "treatments that [] have sufficient supporting evidence." What is "sufficient supporting evidence" anyway? I have evidence enough, from my own health experience and self "cure", to know enough to guide me.

Pyro70 wrote:

ginabeewell wrote:.
Honestly, I've seen many posts from rp1954 that have made me worry that I was missing something that I ought to know or be doing - or honestly, that I was just stupid.

I’m afraid many on this forum have felt the same. Honestly, when I first read RP’s posts I too thought I was missing something until I researched the topic.

I’ll be the first to admit, ever since my diagnosis and being inundated with countless alternative/bs cancer treatments I have a visceral reaction to any treatments that don’t have sufficient supporting evidence.

Too many people prey on cancer patients and it’s understandably difficult for patients to separate what’s real and what’s not. Our medical teams are also stretched thin, and don’t have the capacity to explain to patients why alternative medicine remain “alternative” and isn’t medicine.

I know exactly what your talking about. Over the last year and half I think I've heard it all, many people told me their stories of someone they know that beat cancer using some mixture of this or that, or just having a positive attitude I always loved that one, then there's the carrot guy and the clinics in mexico. But I'm not sure I would consider rp's approach alternative medicine. To me it's more of fine tuning her treatment, and it's working. What he's doing sounds logical and reasonable, he's said himself when he try's something that doesn't work he moves on to something different. But who knows, for me trying to figure out his approach is like solving a riddle seems to be beyond me. But again, it's working for his wife and I think that's awesome.