renw

Maybe you shoud have actually

Maybe you shoud have actually read my post. I did say that Escozine was a knee jerk reaction to my diagnosis, and that it had no effect. I am not peddling anything just providing information and sharing my experiences.

Sorry marie...i agree with
Sorry marie...i agree with tans. I appreciate all the posts and opportunity to learn of things the onc wouldnt mention. I also appreciate the fact that you are trying to protect people. I do hate to see people fighting here...stresses me out like when my kids are fighting!

wawaju04976 said:

I agree with Jen. A while

I agree with Jen. A while back I talked about something I have been using, Vitae Elixxir. I know of two people who stopped doing chemo; one of them the cancer kept returning. He said "no more," went home to finish out his days. Someone in his town told him to try this. He was stage four melanoma. He used it, now uses the maintenance dose, and has been cancer free for over nine years. Do I expect others to go out and get this? No, I don't. I was skeptical when my fiance ordered it. Is it working? Time will tell. I will say I will have my sixth dose of Folfox this Friday and over the weekend (pump). Knock on wood, I have had very little side effects. I have more energy than I have in years. Is it the Elixxir? I hope so...But, as I have said, I am not promoting it. But if it wasn't for some people who take a chance on other things, especially alternative, no one would ever know. And of course many will consider much of the alternatives as quackery. The FDA isn't going to approve anything that won't make millions. Certainly the pharmacies won't. I'd like to think the Elixxir is at least making my immune system more effective. But, I have to say I would have thought it quackery too if I didn't know of two people who had used it here in Maine and are currently in "remission?"

I think courtesy and respect is the key,

on both sides.  I feel Marie is reacting too strongly, and in too public a fashion against a specific member, but at the same time some of those who are most in support of alternative measures have been less than respectful of late themselves.  I addressed this with Pete directly, and I would say that Renw has on occasion not been exactly supportive of other scared newbies who are going a more conventional route.  I don't have a horse in the alternatives vs conventional meds race...chemo didn't work for me, and I do think it's possible cimetidine did help, but at the same time, I see plenty of people getting to survive for years or even achieve a cure through conventional means, so I think there are pros and cons on both sides.  I have seen an awful lot of bashing of conventional methods here, and suggestions that the rest of us are seflfish and blind for not following the alternative path.  How do you all think that makes those newbies feel, who come here looking for support only to be told that the only real hope they have been offered by their docs for survival is all part of a Big Pharma scam?  Maybe this is true, but given that most people are in dire circumstances when they reach out to this board, how does anyone think this is helpful?  Somehow this conversation has to be carried out with RESPECT and KINDNESS for everyone involved.  Everyone is an adult here, and most of us are capable of behaving as such, even under the trying circumstances we all face.  AA

pete43lost_at_sea said:

i like annalexandria answer

if not at this stage of our lives when,  with respect and kindness.

i am sure some good will come out of this storm in a tea cup,  dont we have more important things to do.?

big german hugs,

pete

ps  my views about effective therapies have changed, i am giving renw my full support, if he pulls through using the german therapies

then it bodes well for us all. i would really support him everyone, he has got enough stress, going half way  around the world in search of his cure.

if thats gullible then ill buy some on ebay. stress is bad for us all. play nice friends.

Pete, et al –

 

I think Winter Marie’s point was fairly simple – Those that cannot afford the thousands upon thousands you (and others) are spending on “alternatives”, might be compelled to feel that there are no other possible things that can be of benefit in their fight against cancer.

 

You commented in a past post regarding your German treatments:

“thats what the 455 euro per day covers”

“dr vogel said the mri and ct are excellent. he described my response to the treatment as like 1 in 40”

 

Well, 455 Euro equals $611.11 US Dollars. That’s  $4,277.77 per week; $18,333.30 per month.

 

And… a “1 in 40 positive response rate” is a 2.5% positive response rate! That’s nearly $20 grand US dollars for a month worth of treatments is providing a 2.5% odds that it might work.

 

I can’t afford that, and I don’t know too many others that can. But I can afford the lousy $100 or so I spent on imported medicinal strength herbs per month and a half…… And I had stage four signet cell colon cancer in 2006.

 

No, no “proof” that what’s worked for me will work for anyone else (regardless what a few billion others may insist), but I didn’t spend thousands upon thousands, cash in life insurance policies, or mortgage my home to pay for a 2.5% “chance” at survival, either.

 

The new people arriving at this doorway should not be dismayed by the propaganda regarding expensive “alternatives” they cannot afford, nor should they be compelled to disregard the value of chemical therapy; each has it’s values and failures.

 

We’ve had long-term survivors here that benefited greatly from the simple task of “juicing” and abandoning chemo therapy totally. I’m probably the only one here that’s used herbal decoctions and TCM rather than chemo and radiation….. and I wouldn’t have come back here after the treatment I got in 2006 (using a different name). Back then, there was little if any room for “alternatives”, and even those “juicing” were usually at battle (the two top juicing gals are still alive and doing well, btw!).

 

We’ve come a long way in our effort to promote other viable ways to fight cancer, but promoting these new very costly unproven “remedies” isn’t helping anyone.

 

Grape seed extract, apricot seeds, and scorpion venom, oh my. From $90 an ounce to $900 a vial, and we’re talking about cashing life insurance policies to pay for a $20,000 2.5% chance…..

 

What’s happened to the sanity around here?

 

I sincerely wish everyone the very best wishes for survival!

(but please don’t sell the farm for a chance at it; it’s really not necessary).

 

John

 

renw said:

Tried Juicing for about 3

Tried Juicing for about 3 months, did not help me, but may work for others. TCM is on the list, seeing someone next week. In regards to costs, a valid point. I had to sell my house to be able to afford some of the immuno therapies I have planned. I realize not everyone can do that, but most of the treatments are cheap compared to chemo. Maybe if enough people find them of benefit the situation may change. Is 1 in 40 worth the cost? hell yeah, In my case at least, those odds beat anything I have been told by multiple oncologists.

 

I doubt that anyone here wants to die from cancer; we’re all scared to one extent or another, myself included. Just because one is testing clear, doesn’t remove the fear that the cells are going to grow once again, only with a more likely chance of killing it’s host.

 

One thing I’ve always attempted to stress, is not to allow fear to guide the course one takes. There is no guarantee with any modality, and the “odds” are about the same (as your oncologists noted).

 

It does appear that the speed at which cancer cells grow might depend on one’s body; one’s immune system. If that is the case, then weakening the immune system is counterproductive for the fight against cancer.

 

Unfortunately, all the chemicals used in chemical therapy are known carcinogenic compounds, and all will destroy the immune system. Most oncologists are aware of the problem; some will stop the treatments or lessen the dosage when they notice bad reactions.

 

It’s unfortunate that the patients aren’t being informed of other, safer ways to stifle cancer cells by those that the patients trust to oversee their survival.

 

Although this forum is a great place to publish news and knowledge of “alternative medicine” treatments, we should keep in mind that we are all human, and some will sell homes to pay for a treatment that is sheer chance.

 

Perhaps for some, a 2.5% possible chance to remain alive is worth 20 thousand dollars a month, but is it worth to gamble that much when even basic western medicine can offer the same odds with insurance paying for it?

 

If $6 per pound herbs that last 1.5 months per pound can offer a much higher odds percentage of actually killing cancer cells, are we doing anyone justice by insisting that a $20k per month expense account for a 2.5% possible chance is better?

 

While the best time to try “alternatives” is during the early stages of cancer, many late term cancer patients have fared very well in late stages. Even inexpensive chemicals like Hydrazine Sulfate are cast aside by both the industry and patients, simply from not knowing enough about it.

 

Hydrazine Sulfate - http://scri.ngen.com/ )  I paid $30 for each of two bottles of HS, and keep in around if all else fails. Only two bottles are needed for full treatment; it’s a $60 investment that I hope I’ll never need.

 

Perhaps it’s the same problem I’m seeing with acceptance of Traditional Chinese Medicine; a lack of knowledge and western medicine’s continual mocking of anything that will damage it’s bottom line.

 

There are many other options available for the fight against cancer that are very inexpensive. Having thread after thread of discussions about “scorpion venom”, grape seed extract, etc., does not help those that are suffering with the failure of western medicine and who cannot afford the exotic “remedies” that carry little if any proof of helping anything but the dealer selling the products.

 

There are indeed other options, Ren. I wish more time was spent dwelling on the inexpensive varieties, than all the banter regarding things that most of us can’t afford.

 

I don’t know about you, but I can’t toss everything I have for a 2.5% possible chance it might work.

 

I trust more in a four thousand year-old science; so far, my physicians seem to be convinced of it’s value.

 

(If you see a TCM practitioner, make sure the use of raw herb decoctions are part of the treatment.)

 

Best of health to you, as always,

 

John

 

pete43lost_at_sea said:

thanks john worthwhile comments, i agree with most

New

Dear John and all,

I tried everything conventional including 6 months folfox, 18 months tcm every day I had those delightful teas. 

I did every reasonably affordable alternative therapy from vitamin c to gcmaf yogurt.

Nothing stopped cea rising until removab at 455 per day, I was there 10 weeks and had 3 doctors Vogel chemoembolization’s as well.

Very few have done my therapy combo due to many reasons money, health, time away from family etc. etc.

So far my scan is clear, I have high hopes my result is achievable for other friends here.

I can stop my updates immediately here and live in my blog.

I hope one day we will try immunotherapy first before chemo, straight after surgery, if not before, with psk and cimetidine as well. Oh and vitamin d as well.

Tcm without good nutrition is just as foolish as chemo without good food; my path involves effective lifestyle interventions.

I love qigong, now its 2000 old is it not a part of tcm?

Hugs,

Pete

 

Ps it’s a great discussion, re the odds, 1 in 40 or 1 in 5, you have not highlighted the point, but I will.

For 1 in a million I would spend a million. I dream I will be alive, well, living camping on a beach diving, surfing and posting here. I pray my family is with me, me but money is more important to my wife than my life. I cannot change the reality our life, just live it as well as I can.

That’s all any of us can do.

If my path is the future, we should embrace it now, those who believe my story, it’s their choice

PPS with regard to promotion its ok to suggest tcm beneficial but immunotherapies is not? Please explain.

Is sharing my story considered promotion? Well as far as I am concerned, if it helps one other person then I will keep on sharing it. If you don't like me, and it’s clear you don't. My therapy is not any specific alternative it’s all of them. Politely consider my story from my shoes, not your own.

Maybe I can be spared the horrible side effects of HIPEC surgery, maybe those without surgical options can have a therapy that helps. When will the old give way to the new? This change is always painful, especially for those invested in past or current therapies.

Immunotherapy is today’s latest medicine with enormous potential. I have my therapy plans, I pray they continue.

Maybe sticking with "science" those 4000 years old is ok for some, who like medical history. I however tried the historical view, it clearly failed me. TCM did not stop my marker from increasing. Have you got it, I brewed and had that tea every day for years, right! So allow me to least to share that TCM failed me, that immunotherapy has got rid of my tumors so far. That’s the facts of my story.

I say take advantage of any and everything that gives us a shot of life, of cure from 4000 years old science, to current medical therapies and into the future whatever science is coming around the corner like Nano encapsulated chemo that a friend’s father is about to start testing. We each can decide, if some follow my path well, I guess that’s reason to try and persuade them.

And as for the odds, well Nesselhut said I was one in 10. I don't have Hallwang's comment. Each of the odds I have shared and I will stop sharing them as they get lost due to how well I explain stuff. But the odds refer to individual modalities i.e. chemoembolization was 1 in 40, immunotherapy dendritic cell was 1 in 10, Hallwang with removab I have not asked yet. I firmly believe I have achieved a synergy with these therapies.  

I guess I missed something. I

I guess I missed something. I didn't think Ren was putting down conventional tx. I also didn't think he was promoting his tx. He was just telling what he does. I am new to this forum; I take what I want and leave the rest. I almost don't dare to post now. I feel my feeling from all of this is too bad, as I think I can offer quite a bit. I, too, am not promoting  what I do. I do a combo of both conventional and alternative. I don't think Ren was promoting his. But the reaction he has gotten was done, I feel, as an attack. I feel badly about that...

Judy

wawaju04976 said:

I guess I missed something. I

I guess I missed something. I didn't think Ren was putting down conventional tx. I also didn't think he was promoting his tx. He was just telling what he does. I am new to this forum; I take what I want and leave the rest. I almost don't dare to post now. I feel my feeling from all of this is too bad, as I think I can offer quite a bit. I, too, am not promoting  what I do. I do a combo of both conventional and alternative. I don't think Ren was promoting his. But the reaction he has gotten was done, I feel, as an attack. I feel badly about that...

Judy

Judy –

 

Re:

“I take what I want and leave the rest. I almost don't dare to post now. I feel my feeling from all of this is too bad, as I think I can offer quite a bit. I too, am not promoting  what I do. I do a combo of both conventional and alternative. I don't think Ren was promoting his.”

 

Your information is as valuable here as all other information is, so –please-, don’t avoid posting or adding your comments, we need as much information about all modalities as we can get.

 

And although the thread was posted “to” Ren, it really isn’t about Ren or his chosen path; we all have to make our own path through this maze. We should always keep in mind, that what works for one individual may not work for another.

 

What further complicates our choices, is the fact that each and every modality is practiced differently by each physician or practitioner involved.

 

We have oncologists using different doses of chemicals, and various combinations of the same chemicals; it’s not easy to predict results, or attribute success to any specific combination.

 

Likewise, naturopathic medicine is a variable “science”, just as TCM, or any other alternate path one takes. Locating any specialist that will use any modality to perfection, can be a very frustrating journey, especially for those that feel they are running out of time.

 

Pete suggested that he had tried TCM without success. Both my wife and I have had nothing but success with TCM regarding all maladies. My AF cured, kidney stones dissolved, DVT(s) dissolved, problems with my short bowel/ileostomy and lack of digestive ability resolved….. If it was not for TCM, I would not be here typing!

 

(Although I can attribute it all to a very good TCM physician, the herbs I used for cancer are not what he uses in his practice; they are what I found through research. IIiiiI should note, that I had been made aware that he has oncologists sending him late term cancer patients, and he has had great success treating them).

 

Pete’s lack of success with TCM might be attributed to a practioner that is not as competant as the one we have used, rather than a failure of the modality itself!

 

We have many here that had quit their initial oncologist or surgeon, located a different one, and ended up resolving a very bleak initial prognosis. (Read PhilG’story)

 

So you’re probably wondering: why then, all the fuss?

 

If you dig through the forum’s past topics, you’ll find individuals that were as enthusiastic as Pete regarding their path, but most all were not spending thousands of dollars, mortgaging homes, or cashing in life insurance policies, much less encourage other to do so.

 

Yes, each journey is interesting and can give us some insight to what is available - but if you take some time to notice, these very expensive journeys have been the most predominant lately. The least expensive modalities seem to have taken a back seat to what appears to be another cash-cow industry. When one is using the most expensive methods, and making a claim that other, less expensive modalities have failed them, don’t you feel it has some psychological impact on the one reading about it?

 

The cancer industry is a great example of how subtle the psychology can be. The largest supplier of chemicals used in chemotherapy (a Germany based company)bought rights to Trovax (an immunotherapy drug), and spent millions testing it in the wrong manner, causing it to fail.  

 

Another very well known chemotherapy company (Merck) is currently testing one of the herbs I used. Unfortunately, the herb must be used with another to have any value at all. The testing will eventually indicate that specific herb is useless in the fight against cancer.

 

Those companies are doing that to preserve their own financial interests. But the psychological impact on anyone reading about it is akin to what you read here regarding one modality vs another. It causes one to think: “gee, if they spent all that and it failed, I guess it’s no good”.

 

No, I’m not suggesting there’s any financial gains concerned here among us! The big companies have a reason for doing that, but here it’s just us….cancer victims, all searching for some sort of hope and having the desire to help others by sharing the information. The psychological impact is the same, however.

 

For those of us that simply cannot afford to experiment with the high priced stuff that is being claimed to work while everything else had not….. what does it leave us?

 

So Judy, it’s not “Ren”, or “Pete”, it’s the continual dialog, the mantra, and the insinuation that nothing else is capable of killing cancer cells unless it costs a fortune.

 

Thankfully there are individuals like “Tan”, who point out that the same expensive products can be bought for a fraction of the price.

 

But there are even less expensive ways to fight cancer; other worthwhile modalities. If it weren’t for the heckling they were submitted to, the gals promoting juicing would still be here with recipes and information.

 

All forums are the same, there are all types of personalities and all sorts of stubbornness on every one if them; learning to accept each other isn’t always easy.

 

Don’t let things get to you Judy, and please don’t be afraid to post anything. Life’s too short for most of us to desire fighting to our last breath. I have better things to do, and I’m sure others do as well.

 

Stay healthy, and lean forward.

 

John

 

Who's to Say?

Since we're dealing with something that has no known cure anything is theoretically possible. I highly doubt that if someone new visits that they'd get impression that this is an Alternative Site (for lack of a better way of wording it). If they did get that impression I'd imagine that was what they were looking for.

What I find frustrating are blatant false statements (i.e. Lies) that are posted as Fact instead of Opinion (i.e. BS). I guess if one repeats it to themselves enough it becomes true? It's really not productive to the conversation (or to the community) and can easily take away any credibility one might have had...

pete43lost_at_sea said:

double standards

I have never provided an itemised bill, of what my supplements cost, its to much work. yes i have alot, and some are expensive, most are the best quality I can source or whats been advised by my doctors. Very occaisionally i have provided an estimate. I believe the expense and the effort in supplementation worthwhile. yes there are charlatans. some of the call themselves oncologists, other sell alternative therapies. everyone is out to buck a dollar off our misery. I got over that fact easily, I shop around, i negotiate and i prioritise what i do.

I hate to think newbies will come here and read your post, they might of just purchased blue scorpion venom and your negativity would have crushed there hope. its not our role to crush others hope. or you might have crushed ren's spirit. you see winter you have no idea whats ahead of ren, i do. he is in for a very rough ride and it would be nice for him to supported.

you see, your open attack on ren would likely cause him some stress, thats bad for his immune system. I guess you don't believe that piece of science, but to me your negativity is really harmful and sets a bad example.

the truth as i see it, is your approach is far more damaging to newbies then anything ren had to say.

I suspect that I was roughly on a similar protocol to tans before I went to germany. what i spent would have likely been similar.

When I went to germany, i went off all supplements, and follwoed the clinic supplemnt plan which used a combo of iv and tablet supplements. of course that was more expensive. so whats your point. oh is that almost noone has the funds to afford these therapies. thats been made loud and clear.

I wish the quality of our care was not determined by our wealth and our insurance but it is. all you guys here with top class insurance to the best cancer centers in the states, while others on medicade just get the basic options. if that fair no.

For a start I bet my annual spend on all my german alternatives will be less than what you spend in a year on your top class america hospitals for your current colorectal standard of care.

Its a shame that your system is so compromised by fda rules and regulations that it prohibits the delivery of innovative therapies. that fact that my american friends cannot access therapies under your insurance, is much the same situation i am in australia.

I will let the quality and the resultss of the german therapies speak for themselves. I have had the pain, the suffering and all the dramas that comes with the territory of colorectal cancer.

I expected support and admiration for finding a possible curative path. some people ere have been kind, some hav been silent and a few negative. a few friends have said how fantastic that you share and publish all your result.

The real issue that underlies the controversy of my therapies is not the money it costs, thats incidental.

the issue is that these therapies will take a very very long time to get implemented and tested in the states. its your health system, you fix it, its broken and its your rclear responsibility. After all its a democracy. Maybe the hostility towards ren and myself would be better channeled into achieving something worthwhile in your own country.

why even today I had an email for another immunotherapy advocate in australia, we are teaming up, we are passionate about saving lives, even the time righting this post is a distraction from research.

the whole chemo strategy is flawed, you know you used the gullible. please truly consider who is gullible. I know, and its not ren and me.

I have not heard of another colorectal stage 4 pulling off a complete three month remission without surgery, without systemic chemo.

now ren is trying to pull off the same achievement, and he is getting rubbished. well just for the record, effective suppleementation going into these therapies is what i did, and i think its reasonable ren does as well. of course what he does is his business.

change is difficult, especially when one country offers supperior medical services.

to be honest i don't need the stress of you attacking a friend i asked to come here, my remission is to fragile. stress is bad for my immune system also.

you just don't get it, that if ren tries what i tried then maybe just maybe i have some therapies that can buy us another quality year or two or even a nice long remission or dare i say it cure.

and even before chemo is even talked about.

winter and john, you guys win, i am going to save my resources for those here in germany, and those who are coming. i will leave you guys to talk about chemo chemo and more chemo and your tcm herbs. even tonight i was helping a new friend who is sick after chemoembolisation.

the science from germany that i have made a considerable effort to share is clearly not wanted here, i certainly won't encourage any other colorectal patient to come here and share what they are trying. i would not do that to an enemy.

oh and john "henry liang" is my chinese herbalist, he is the best in australia, do you think i would have anything less. I still think tcm has many benefits, please don't attack me experience by slandering my doctor, saying he is unskilled. its likely he knows more than you. he is a tcm cancer specialist, he lectured at australias largest tcm conference. but you beleive what you want, I will however protect the reputation of my doctor, he is dedicated and knowledgable. my tcm failure, stands. you may not like that, as i am probably the only one here who has tried it for two years. every couple of weeks i would drive 3 hours return to get the herbs. can't i at least say what my experience is without you attacking it. after all its my experience, not yours.

your attack on my herbalist who has a phd for his research in tcm and lung cancer. google him if you want, well I guess you want to discredit my experience to protect what you value. of course you are free to do that.

you know the irony, was I tried to pack my tcm cooker and 30 packs of herb, but I could not fit them in the luggage for germany. so i left them at home. I had then over xmas.

hugs, ( for the last time )

Pete

There is so much discrepancy
There is so much discrepancy here, it isn't funny.

Wonder what Winter Marie thinks about John's, Hydrazine Sulfate.........is that ok???????????????????????
And exactly which TCM is ok. Winter Marie said in another thread that some TCM was ok, or fine, not sure of exact quote.

It's interesting to observe who supports who. Winter Marie sides with John. John sides Winter Marie. John supports Emily (one of the juice gals). Winter Marie does not support juicing as a cure (neither do I as a cure ........not saying it's never been done). We all know what happened to the juice girls and WHYYYYY they left the forum.

So much hatred here. This pettiness is worse than high-school.

Each and every person on the face of this earth has different talents. Research in not everyone's strength. I prefer to hear from people who have done lots and lots and lots of homework. H@LL........i could read one thing on the internet and act like a know- it- all on the subject.

How to you get people to stick to what they are good at............you don't, if they are set in their ways. So you just have to IGNORE all the BS.

Pete, am I jealous of your wealth........H#LL NO!!!!!!!!!! You are a kind, caring, person. I trust that you will take charge and bring a whole lot of attention to this horrible disease. You are on a mission, and I could not admire you more.

Pete, many people here are looking toward you.
You better not leave here, Pete. You would let down so many. Do we want to do everything that you do........no, not everything......but you are providing a lot of very good information. Anyone who does not want to read it, does not have to. PERIOD!!!!!!!!!!!!!!

Also, for all those who think they know the answer to everything........HAVE YOU ACTUALLY READ ALL THAT MWNN HAS DONE, AND IS DOING, FOR HIS PRECIOUS SON?????????? Good grief......his reasearch is outstanding, his persistence is unheard of. All of that for his SON.

A while back, Ann Alexander told us that MWNN (Tony) was indeed legitimate.........because some thought he was an imposter......ooooohhh.
She said maybe he deserved an apology for all the bashing. NOT ONE BASHER apologized. NOT ONE. Goes to show the type of character around here.

I'm tired, didn't even want to waste my time here.......but this has gotten beyond STUPID.

Oh, and since chemo doesn't work for me anymore..........I am going to be tested for an immunotherapy trial that has shown very good results. I have talked to 4 people who are on it.....had lunch with another one. I found a 42-year old doctor who is H*LL- BENT on finding a cure, or at least non-toxic ways to treat this hellacious monster. Most older doctors are going to keep doing what they know. The fresh blood in this business is great. They are reading and researching new FACTS....... And it's about IMMUNOTHERAPY........NOT chemo.

I hope I can get into the trial......hope the last bit of chemo has not completely destroyed my liver. Liver enzymes are through the roof, Bilirubin UP, BUN up.
Thanks Chemo!!!!!!!!! And, how many people have to DIE until the majority truly GET THIS........and people like Pete have to LITERALLY go to the ends of the earth to see if he can make a difference. It's not JUST about him........he is doing this for his family, and to help many friends along the way. I surely hope that JEALOUSLY is not the problem here. What a SHAME!!!!!!!!

Read what you want, ignore the rest. Do not post opinion as facts. Be kind and thoughtful. Leave the hatred at home.....and how sad is that. Cancer is hard enough.