xango mangosteen

I agree with you John, and I also think it's important to note that  Allan Carr combines traditional treatments with his alternative regime. He did chemo when he had the tumour near his heart, and I'm pretty sure he zapped a lung met or two — I can't find a pat net for him, but I recall him mentioning this in the past.

I agree with you John, and I also think it's important to note that  Allan Carr combines traditional treatments with his alternative regime. He did chemo when he had the tumour near his heart, and I'm pretty sure he zapped a lung met or two — I can't find a pat net for him, but I recall him mentioning this in the past.

Why should the government pay for it? The companies that produce/supply the proucts are the ones with the responsibility to prove or disprove their claims. But it's much easier and  profitable for them to rely on a few case studies and anecdotes to use to make their claims. Surely it would be worth their while if they believed their products actually worked?

Really? You think the same degree of scientific rigour is not should not be required of alternative therapies? A 'running tally' would be enough? Well I guess it could be, as long as people are happy for a larger number of people to die before something is determined to be dangerous, or alternatively (no pun intended) a far greater time period to detrmine efficacy.

Research and statistics seem so simple until one actually studies (in depth) the methods and reasons behind them. The confounders, the bias, the levels of evidence. It never ceases to amaze me on here how people automatically attribe a NED status to something they assume they are doing right. Eg. Someone may be NED at stage x for x number of years, putting them within the expected percentage of ALL people in that stage, but will assume it's because of their diet or sharks cartilage or meditation, completely ignoring the fact that the other people in the same situation have not followed any of the same therapiies/diet regime. That's just human nature in that people need to feel they have some control over what is happening to them.

Frankly from what I have seen here, it is abundantly clear that most people cannot differentiate between coincidence, correlation and causation. People can try what they want when they want as far as I'm concerned, but many people on this board have opted for alternative therapies and are not around to tell the tale. Mel is going to do what it is going to do, obviously a healthy lifestyle is not going to hurt to adopt, but that does not mean that lifestyle should be automatically considered responsible for what occurs.

There are rare occasions of "spontaneous remission" in mel, too. As yet I haven't quite decided to give myself a massive infection in the infintisemal chance that MAYBE the extremely high (and dangerous) temperature for days will result in the  destruction of my melanoma. Nor have I packed up my life and gone to live in the mountains. (Give up electricity? Are you mad?!?!)

First one would have to approriately study the supplements/diet/therapies (and determine the side effects- so it would be unethical and downright dangerous to collect that info by a "tally sheet"). THEN there would have to be further study to compare the efficacy of the other treatment to determine superiority-  and for that to have any real value the study would have to be conducted in a manner far more closely than a running tally. It would need to be done prospectively, not as a retrospective comparison. Exclusion and inclusion criteria exist for a reason- the patient population needs to be closely matched otherwise you're just comparing apples to oranges which is completely useless.

But hey, a tally sheet will work as long as people are happy to wait for 20 years to see what works and what is more likely to kill you – and even then the results would be extremely unreliable 🙂

We ALL want a magic bullet, but for those who have thrown everything at mel (and I mean EVERYTHING- traditional therapies, alternative therapies, supplements, meditaion, whatever)  and still progressed, these types of posts must be extremely distressing because the underlying tone is that it is something they failed to do, and not something melanoma managed to achieve despite their best efforts. (Not myself, though- I most certainly do not feel that way)

Why should the government pay for it? The companies that produce/supply the proucts are the ones with the responsibility to prove or disprove their claims. But it's much easier and  profitable for them to rely on a few case studies and anecdotes to use to make their claims. Surely it would be worth their while if they believed their products actually worked?

Really? You think the same degree of scientific rigour is not should not be required of alternative therapies? A 'running tally' would be enough? Well I guess it could be, as long as people are happy for a larger number of people to die before something is determined to be dangerous, or alternatively (no pun intended) a far greater time period to detrmine efficacy.

Research and statistics seem so simple until one actually studies (in depth) the methods and reasons behind them. The confounders, the bias, the levels of evidence. It never ceases to amaze me on here how people automatically attribe a NED status to something they assume they are doing right. Eg. Someone may be NED at stage x for x number of years, putting them within the expected percentage of ALL people in that stage, but will assume it's because of their diet or sharks cartilage or meditation, completely ignoring the fact that the other people in the same situation have not followed any of the same therapiies/diet regime. That's just human nature in that people need to feel they have some control over what is happening to them.

Frankly from what I have seen here, it is abundantly clear that most people cannot differentiate between coincidence, correlation and causation. People can try what they want when they want as far as I'm concerned, but many people on this board have opted for alternative therapies and are not around to tell the tale. Mel is going to do what it is going to do, obviously a healthy lifestyle is not going to hurt to adopt, but that does not mean that lifestyle should be automatically considered responsible for what occurs.

There are rare occasions of "spontaneous remission" in mel, too. As yet I haven't quite decided to give myself a massive infection in the infintisemal chance that MAYBE the extremely high (and dangerous) temperature for days will result in the  destruction of my melanoma. Nor have I packed up my life and gone to live in the mountains. (Give up electricity? Are you mad?!?!)

First one would have to approriately study the supplements/diet/therapies (and determine the side effects- so it would be unethical and downright dangerous to collect that info by a "tally sheet"). THEN there would have to be further study to compare the efficacy of the other treatment to determine superiority-  and for that to have any real value the study would have to be conducted in a manner far more closely than a running tally. It would need to be done prospectively, not as a retrospective comparison. Exclusion and inclusion criteria exist for a reason- the patient population needs to be closely matched otherwise you're just comparing apples to oranges which is completely useless.

But hey, a tally sheet will work as long as people are happy to wait for 20 years to see what works and what is more likely to kill you – and even then the results would be extremely unreliable 🙂

We ALL want a magic bullet, but for those who have thrown everything at mel (and I mean EVERYTHING- traditional therapies, alternative therapies, supplements, meditaion, whatever)  and still progressed, these types of posts must be extremely distressing because the underlying tone is that it is something they failed to do, and not something melanoma managed to achieve despite their best efforts. (Not myself, though- I most certainly do not feel that way)

NICOZ,

You are SO RIGHT ON! I agree with you 100% on all points! People need to be smart and when they look at research need to understand statistics and validity, read how large the study was, over how long, who funded the study, what was the purpose of the study, etc. People also need to be careful about "correlation", just like you said…..while we can all benefit from eating a healthier diet, there is no evidence that eating organic foods or juicing, taking supplements, etc will kill melanoma. Like you said it does help give people some sense of control when they feel they have lost control to melanoma, and as long as the alternative treatments DONT HURT and their doctor is aware of what they are doing, then maybe it is ok. 

Vermont_Donna, stage 3a

just finished 4th infusion of Ipi

NICOZ,

You are SO RIGHT ON! I agree with you 100% on all points! People need to be smart and when they look at research need to understand statistics and validity, read how large the study was, over how long, who funded the study, what was the purpose of the study, etc. People also need to be careful about "correlation", just like you said…..while we can all benefit from eating a healthier diet, there is no evidence that eating organic foods or juicing, taking supplements, etc will kill melanoma. Like you said it does help give people some sense of control when they feel they have lost control to melanoma, and as long as the alternative treatments DONT HURT and their doctor is aware of what they are doing, then maybe it is ok. 

Vermont_Donna, stage 3a

just finished 4th infusion of Ipi

I totally agree with Nic and Donna.

My aunt actually sells Mangosteen juice and tried to get me to drink/buy it 2 years ago. It's over $15 a bottle and only anectdoctal stories are on the website which I know are to sell the stuff. Didn't sway me and I of course want my cancer gone as does everyone else.

I'm reading the Emperor of All Maladies, really good book. Anyway there was a radio interview of the author the other day and he said something to the effect of yes a good diet is important in fighting the good fight, but for someone to try and say that eating broccoli will cure someone is just offensive. I try and eat healthy when I can but I know that when I decide to have a cookie it's not going to be the end of me, and if it is well then damn I'm going to enjoy the hell out of that cookie.

I went completely alkaline when I was first diagnosed. Even tested my urine everyday. 12 weeks later I had scans and my tumors had all grown. So I'm not one to believe that all there is to a cure is diet.

Sorry this got so long! I'm having a frustrating day and guess I felt the need to vent a bit.

Kellies(from Iowa) Stage IV since June 2008

I totally agree with Nic and Donna.

My aunt actually sells Mangosteen juice and tried to get me to drink/buy it 2 years ago. It's over $15 a bottle and only anectdoctal stories are on the website which I know are to sell the stuff. Didn't sway me and I of course want my cancer gone as does everyone else.

I'm reading the Emperor of All Maladies, really good book. Anyway there was a radio interview of the author the other day and he said something to the effect of yes a good diet is important in fighting the good fight, but for someone to try and say that eating broccoli will cure someone is just offensive. I try and eat healthy when I can but I know that when I decide to have a cookie it's not going to be the end of me, and if it is well then damn I'm going to enjoy the hell out of that cookie.

I went completely alkaline when I was first diagnosed. Even tested my urine everyday. 12 weeks later I had scans and my tumors had all grown. So I'm not one to believe that all there is to a cure is diet.

Sorry this got so long! I'm having a frustrating day and guess I felt the need to vent a bit.

Kellies(from Iowa) Stage IV since June 2008

Are you being deliberately obtuse? Or have I suffered a bout of Broca's aphasia and am now unable to communicate effectively at all? At what point did I suggest that many of today’s medically based treatments were not the result of mother nature? Could you point that out for me please?

What I said was in response to your suggestion that a TALLY is an efficient and effective form of researching  TREATMENT, and the suggestion that researching THESE possible treatments not be expected to undergo the same rigorous studies before being let loose on patients.

I’m also fairly certain I said people have every right to try what they want- more power to them. But don’t start throwing out the name of Gonzalez whose treatment resulted in his arm of the trial died faster than people on traditional chemo.  That he has the gall to stand in front of a tv camera says nothing about the man’s honesty- merely the fact that he realises that people are desperate and willing to try anything when terrified in order to make money.

Your behaviour is irresponsible in mentioning him is concerning to say the least.  

And as I believe I already said, if those people want to claim their treatments are successful, then it is up to THEM to arrange to have them researched. I actually thought what I wrote was fairly clear. Not once did I even mention the xango mangosteen or suggest that no one take it, so why even bring it up? My comments about “spontaneous remission” are in regard to published research about it, and mentions some of those case studies- they happen, but infrequently.

But you didn’t actually respond to what I had to say, instead you preferred to deflect, so there probably isn't' much point in continuining to reply to you.

I may have had brain surgery a few days ago, but don’t delude yourself that I have any problems with my cognition.

But basically there is no point in responding further to someone who hasn’t even listened to what I said. You know nothing about what I take or don’t, what supplements I may or may not use, so don’t make an a$$ out of yourself- it’s embarrassing to watch.

“The point of all this is that we all want to know what treatments, drugs, supplements, etc. "work" and we don't want to be conned into something that is b.s., leaving us a little or a lot lighter in the wallet.” (And I disagreed with you exactly how? By suggesting the research needs to be scientifically obtained? Gee… how insane of me!)

But thanks for the laugh 😀

NicOz. I was responding after reading all of the posts after mine. It's not "all about you". However, I will respond to something that you said regarding Gonzalez "Your behaviour is irresponsible in mentioning him is concerning to say the least." I am aware of two people that were treated by Gonzalez and said good things about him…one had stage IV breast cancer and saw her tumors go away and then come back and decided to go a different route due to the expense and the work involved in doing the Gonzalez program. She felt that the stress that she was under was a big factor in the tumors coming back. She had nothing but good to say about him. I have not been in contact with her since our only conversation about 2 years ago. Another had stage IV melanoma (liver and possibly pancreas). I believe he said that they were not resectable. He went to Gonzalez,  followed his program, and his tumors disappeared within a year. I know that he was NED for two years after that (which is when I spoke to him) but I found out that he recently passed away, two years after I spoke to him. I hope to get in touch with his wife at some point. So, having known this about these 2 people, it is DEFINITELY not irresponsible to mention him. As I essentially said in a previous post, I wish that people like him and other alternative medicine practitioners would be investigated to determine if their treatment is helpful, and to what extent, or not. NOTE: I am a proponent of "whatever works for that individual".

NicOz. I was responding after reading all of the posts after mine. It's not "all about you". However, I will respond to something that you said regarding Gonzalez "Your behaviour is irresponsible in mentioning him is concerning to say the least." I am aware of two people that were treated by Gonzalez and said good things about him…one had stage IV breast cancer and saw her tumors go away and then come back and decided to go a different route due to the expense and the work involved in doing the Gonzalez program. She felt that the stress that she was under was a big factor in the tumors coming back. She had nothing but good to say about him. I have not been in contact with her since our only conversation about 2 years ago. Another had stage IV melanoma (liver and possibly pancreas). I believe he said that they were not resectable. He went to Gonzalez,  followed his program, and his tumors disappeared within a year. I know that he was NED for two years after that (which is when I spoke to him) but I found out that he recently passed away, two years after I spoke to him. I hope to get in touch with his wife at some point. So, having known this about these 2 people, it is DEFINITELY not irresponsible to mention him. As I essentially said in a previous post, I wish that people like him and other alternative medicine practitioners would be investigated to determine if their treatment is helpful, and to what extent, or not. NOTE: I am a proponent of "whatever works for that individual".

Are you being deliberately obtuse? Or have I suffered a bout of Broca's aphasia and am now unable to communicate effectively at all? At what point did I suggest that many of today’s medically based treatments were not the result of mother nature? Could you point that out for me please?

What I said was in response to your suggestion that a TALLY is an efficient and effective form of researching  TREATMENT, and the suggestion that researching THESE possible treatments not be expected to undergo the same rigorous studies before being let loose on patients.

I’m also fairly certain I said people have every right to try what they want- more power to them. But don’t start throwing out the name of Gonzalez whose treatment resulted in his arm of the trial died faster than people on traditional chemo.  That he has the gall to stand in front of a tv camera says nothing about the man’s honesty- merely the fact that he realises that people are desperate and willing to try anything when terrified in order to make money.

Your behaviour is irresponsible in mentioning him is concerning to say the least.  

And as I believe I already said, if those people want to claim their treatments are successful, then it is up to THEM to arrange to have them researched. I actually thought what I wrote was fairly clear. Not once did I even mention the xango mangosteen or suggest that no one take it, so why even bring it up? My comments about “spontaneous remission” are in regard to published research about it, and mentions some of those case studies- they happen, but infrequently.

But you didn’t actually respond to what I had to say, instead you preferred to deflect, so there probably isn't' much point in continuining to reply to you.

I may have had brain surgery a few days ago, but don’t delude yourself that I have any problems with my cognition.

But basically there is no point in responding further to someone who hasn’t even listened to what I said. You know nothing about what I take or don’t, what supplements I may or may not use, so don’t make an a$$ out of yourself- it’s embarrassing to watch.

“The point of all this is that we all want to know what treatments, drugs, supplements, etc. "work" and we don't want to be conned into something that is b.s., leaving us a little or a lot lighter in the wallet.” (And I disagreed with you exactly how? By suggesting the research needs to be scientifically obtained? Gee… how insane of me!)

But thanks for the laugh 😀

Sorry, here is a link to Allen's profile

https://www.melanoma.org/community/profiles/allen-c

he usually is very happy and helpful if you e-mail him.

[email protected]

Sorry, here is a link to Allen's profile

https://www.melanoma.org/community/profiles/allen-c

he usually is very happy and helpful if you e-mail him.

[email protected]

John,

I agree with most of what you said, but I have to take issue with something that you said. You bought all kinds of supplements because of people like me??? I take one thing that's considered a supplement: Flaxseed oil. I just try to follow a grade A healthy diet, along with other things…religion, reiki, massage…I don't know why I'm "doing well" for sure (I hope that it's my prayers) but I just wanted to treat my mind, body, and spirit as well as I could. As far as the therapies that have been proven to not make a big difference…I don' t think that any of them have been disproven or proven. The Gerson people may say that their one study with melanoma that they did offers proof of effectiveness for some cases of melanoma, but I don't recall them having an independent monitoring group.

Best wishes to you too.

Jake

John,

I agree with most of what you said, but I have to take issue with something that you said. You bought all kinds of supplements because of people like me??? I take one thing that's considered a supplement: Flaxseed oil. I just try to follow a grade A healthy diet, along with other things…religion, reiki, massage…I don't know why I'm "doing well" for sure (I hope that it's my prayers) but I just wanted to treat my mind, body, and spirit as well as I could. As far as the therapies that have been proven to not make a big difference…I don' t think that any of them have been disproven or proven. The Gerson people may say that their one study with melanoma that they did offers proof of effectiveness for some cases of melanoma, but I don't recall them having an independent monitoring group.

Best wishes to you too.

Jake

Sherron, people seem to think I have slammed alternative therapies and am completely against them- never at any stage did I suggest that was the case, so I am responding to your post . That is not my position- merely they need to be put throught the same rigorous testing as conventional therapies if they are going to benefit the patients. Jim DID fight the good fight, and I was very sad to hear of his passing, but there is no judgement from me with regard to anything a patient chooses to try. He made his choice which was the right one for him, and he didn't look back- as one shouldn't.

I may be here around 2.5 years longer than I was expected to have been, yet I am aware that melanoma acts differently in different people so I am not going to come on here and suggest that people follow my lifestyle example because it has been working for me (nor am I going to give much creedence to my lifestyle as much of a factor at all) I'm hardly going to suggest that perhaps the beer/wine/margaritas, caffeine and nicotine and processed food, and numerous craniotomies is something everyone should consider because it's worked for me so far 😀 That is what I've been trying to illustrate- these therapies need to be thoroughly researched so they can be generalised, not just held up as shining examples of potential cure with no evidence.

My original melanoma diagnosed was "whoops! You're stage 4 with 3 brain mets, and we need to take 2 of them out asap" … and you have an unknown primary, so for myself personally, I have no fear of recurrence. I have lived with it in my CNS from the second I was diagnosed. That is not to say I didn't introduce some lifestyle changes and introduce certain supplements, and even a medication which showed some early promise re: inhibiting angiogenesis in the CNS. That is also not to say they lasted. I do not judge people for trying things that work for them. I am not slamming 'alternative therapies' because they are labeled such. I AM concerned that some suggestions are outright dangerous and have been mentioned by people on this board, and that someone may actually decide to try it. And I firmly believe they need to be held to the same scientific methods of researching their effectiveness and side effects.

Many people on this site are vulnerable and I would hate to see them influenced into an alternative treatment protocol which has been proven a worse treatment than conventional chemo simply because there are a few online testimonials claiming success. I am simply trying to ensure patients make informed choices. But really? Why would I take issue if anyone chose to take xango mangosteen juice? As long as it isn't harming them… and I guess that's another problem I have- what's to say it doesn't harm a certain population of people or effect medication that people are taking? THAT is what I'm asking people to think about. Aspirin is fantastic, no? Helps a LOT of people… but not so good for those with gastrointestinal issues and it took a LONG time before that became known. Simply put, if we can be reasonably sure it doesn't harm, then go for it. But I ask that people take the time to look into things before they make their decision.

People can look up research about conventional treament, and make as informed as possible a choice, looking at their risk:benefit ratio. That is not always possible with untried therapies as the data doesn't exist. If I posted on here that I'd drank camel urine for a week and my tumours had shrunk, there would be the risk that others would grasp for that as their magic bullet, and what a tragedy it would be if it turned out that the other 20 people who tried it had their kidneys fail as a result. (*disclaimer* This is just an example, I am not comparing any juice as the equivalent of camel urine, though I certainly tasted ones that I imagine would taste similar to it 😀 )

All I am trying to express is my hope that people can take a breath and exercise some caution and give due consideraiton to their treatment, whatever treatment that may be. My aim is not to destroy hope.  And as another patient mentioned, they find "Do this- it cured/worked for me" somewhat offensive when people have tried a multitude of things for many years, and I think many people who post those sort of things don't stop to consider that they've been there, done that.

So this is very much not a debate about anti versus pro alternative therapies/supplements/completmentary medicine, though it has tried to be made into one through deliberate misdirection. I hope no one else will read what they THINK I am saying and actually look at what has been said.

And now? Back to regular scheduled programming because if it's not clear at this point then it's never going to be, and I have better things to do than to repeat myself 😛 Yes, I have an agenda- patient safety, knowledge and advocacy.

Best to all, because I will not be back to repond to this thread.

Nic

Sherron, people seem to think I have slammed alternative therapies and am completely against them- never at any stage did I suggest that was the case, so I am responding to your post . That is not my position- merely they need to be put throught the same rigorous testing as conventional therapies if they are going to benefit the patients. Jim DID fight the good fight, and I was very sad to hear of his passing, but there is no judgement from me with regard to anything a patient chooses to try. He made his choice which was the right one for him, and he didn't look back- as one shouldn't.

I may be here around 2.5 years longer than I was expected to have been, yet I am aware that melanoma acts differently in different people so I am not going to come on here and suggest that people follow my lifestyle example because it has been working for me (nor am I going to give much creedence to my lifestyle as much of a factor at all) I'm hardly going to suggest that perhaps the beer/wine/margaritas, caffeine and nicotine and processed food, and numerous craniotomies is something everyone should consider because it's worked for me so far 😀 That is what I've been trying to illustrate- these therapies need to be thoroughly researched so they can be generalised, not just held up as shining examples of potential cure with no evidence.

My original melanoma diagnosed was "whoops! You're stage 4 with 3 brain mets, and we need to take 2 of them out asap" … and you have an unknown primary, so for myself personally, I have no fear of recurrence. I have lived with it in my CNS from the second I was diagnosed. That is not to say I didn't introduce some lifestyle changes and introduce certain supplements, and even a medication which showed some early promise re: inhibiting angiogenesis in the CNS. That is also not to say they lasted. I do not judge people for trying things that work for them. I am not slamming 'alternative therapies' because they are labeled such. I AM concerned that some suggestions are outright dangerous and have been mentioned by people on this board, and that someone may actually decide to try it. And I firmly believe they need to be held to the same scientific methods of researching their effectiveness and side effects.

Many people on this site are vulnerable and I would hate to see them influenced into an alternative treatment protocol which has been proven a worse treatment than conventional chemo simply because there are a few online testimonials claiming success. I am simply trying to ensure patients make informed choices. But really? Why would I take issue if anyone chose to take xango mangosteen juice? As long as it isn't harming them… and I guess that's another problem I have- what's to say it doesn't harm a certain population of people or effect medication that people are taking? THAT is what I'm asking people to think about. Aspirin is fantastic, no? Helps a LOT of people… but not so good for those with gastrointestinal issues and it took a LONG time before that became known. Simply put, if we can be reasonably sure it doesn't harm, then go for it. But I ask that people take the time to look into things before they make their decision.

People can look up research about conventional treament, and make as informed as possible a choice, looking at their risk:benefit ratio. That is not always possible with untried therapies as the data doesn't exist. If I posted on here that I'd drank camel urine for a week and my tumours had shrunk, there would be the risk that others would grasp for that as their magic bullet, and what a tragedy it would be if it turned out that the other 20 people who tried it had their kidneys fail as a result. (*disclaimer* This is just an example, I am not comparing any juice as the equivalent of camel urine, though I certainly tasted ones that I imagine would taste similar to it 😀 )

All I am trying to express is my hope that people can take a breath and exercise some caution and give due consideraiton to their treatment, whatever treatment that may be. My aim is not to destroy hope.  And as another patient mentioned, they find "Do this- it cured/worked for me" somewhat offensive when people have tried a multitude of things for many years, and I think many people who post those sort of things don't stop to consider that they've been there, done that.

So this is very much not a debate about anti versus pro alternative therapies/supplements/completmentary medicine, though it has tried to be made into one through deliberate misdirection. I hope no one else will read what they THINK I am saying and actually look at what has been said.

And now? Back to regular scheduled programming because if it's not clear at this point then it's never going to be, and I have better things to do than to repeat myself 😛 Yes, I have an agenda- patient safety, knowledge and advocacy.

Best to all, because I will not be back to repond to this thread.

Nic