Dee,
This is what I find puzzling. Earlier is this post you replied with this this to Lev.
“If you need scientific proof then these methods are not for you, but others should be able to discuss them without your approval.”
This tells me that you do not need any scientific proof or evidence that that myeloma therapies you are a proponent of work and, to your credit, you openly say it. Does this mean that some kind of faith alone is enough, or that simply the word of an individual saying "trust me" is enough for you to believe in a therapy's effectiveness?
Advocating a myeloma therapy to others that you yourself do not need any scientific evidence that it actually has any effectiveness, just the word of some individual trying to sell it and one-off anecdotal testimonies, to me is a bit of a dangerous thing to do.
I think back to the 1800s when there used to be all kinds of people who would come into towns across America selling ineffective therapies and cures for all kinds of aliments. Often they would have somebody planted in the audience when making their pitches and that person would lie and make all kinds of anecdotal claims how it cured them to get others to buy. This is what led to the creation of the FDA. I see some of this alternative therapy marketing and to me the similarities to what was commonly going on in the 1800s is spooky.
Then later you say to Nancy after she watches the video:
“Wow, that is what you got from that? Just amazing, I have no words.”
I am not surprised at all by what Nancy got from that video and I am amazed and have no words for your reaction. If somebody looks at that video through the viewpoint of looking at the science and clinical trial evidence, peer review, and repeatable results when done by others for a therapy, like most people do, and you post a link for a video that has none and you admit it is not that important to you, then why are you speechless by Nancy’s take on the video?
Forums
Re: Unconventional methods treating multiple myeloma
Hi Again Dee, Eric and Mike, I felt that I may have been a bit harsh in my critique of the video Dee posted, but I just have my own set of experiences to work from. I am probably a lot older than you, Dee!
I think what has been an issue of concern, and not just for myeloma cancer, is that these sorts of 'alternative' clinics can divert patients from getting timely treatments that might just work for them from the conventional sources. Also, these alternative treatments can be very expensive, and I wouldn't want to waste money on them, since I have already experienced quite a bit of success getting my treatments from my home cancer centre.
My background is that my family are all in the medical world, so of course that is my bias! It's always good to 'compare and contrast', as we do on the Beacon, and which I personally find to be very helpful.
I think what has been an issue of concern, and not just for myeloma cancer, is that these sorts of 'alternative' clinics can divert patients from getting timely treatments that might just work for them from the conventional sources. Also, these alternative treatments can be very expensive, and I wouldn't want to waste money on them, since I have already experienced quite a bit of success getting my treatments from my home cancer centre.
My background is that my family are all in the medical world, so of course that is my bias! It's always good to 'compare and contrast', as we do on the Beacon, and which I personally find to be very helpful.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Unconventional methods treating multiple myeloma
I know it may seem like I am being harsh too, but myeloma and its treatment are very serious topics. The decisions made can make the difference between life or death. This not auto repair, golf swings, or some other topic where the ramifications of bad decisions are not so serious.
I have seen people do their first post on the Beacon where they or a relative have just been diagnosed, they have started treatment and may be in the hospital, things are shaky for them, and are very confused and scared by what is going on. They are looking for some reassurance and confidence that their medical team is doing the best thing for them. Advocating and posting links to alternative therapies to people in these situations, when there is little or no scientific evidence that those therapies have any effectiveness, to me is not a good idea and not reassuring to people in these situations.
Last year somebody posted links to Dr. Gonzales to somebody in this situation. So I follow those links to Dr. Gonzales’s treatments he puts up on the internet. You do not have to go far down the path before you encounter his fear mongering negative views and opinions on “conventional cancer treatments” being ineffective and how the broad medical community, despite decades of research among thousands of researchers, do not even know what cancer is, so they will not be able to cure it, but he does.
He throws out statistics, I have no idea where he gets them from, of high failure rates of conventional cancer treatments etc that do not seem to correlate at all with the status of cancer treatments in 2014. I try to put myself in this newly diagnosed situation where I am lost and confused and then I came across this, not very reassuring at all, makes the situation even worse.
I have seen people do their first post on the Beacon where they or a relative have just been diagnosed, they have started treatment and may be in the hospital, things are shaky for them, and are very confused and scared by what is going on. They are looking for some reassurance and confidence that their medical team is doing the best thing for them. Advocating and posting links to alternative therapies to people in these situations, when there is little or no scientific evidence that those therapies have any effectiveness, to me is not a good idea and not reassuring to people in these situations.
Last year somebody posted links to Dr. Gonzales to somebody in this situation. So I follow those links to Dr. Gonzales’s treatments he puts up on the internet. You do not have to go far down the path before you encounter his fear mongering negative views and opinions on “conventional cancer treatments” being ineffective and how the broad medical community, despite decades of research among thousands of researchers, do not even know what cancer is, so they will not be able to cure it, but he does.
He throws out statistics, I have no idea where he gets them from, of high failure rates of conventional cancer treatments etc that do not seem to correlate at all with the status of cancer treatments in 2014. I try to put myself in this newly diagnosed situation where I am lost and confused and then I came across this, not very reassuring at all, makes the situation even worse.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Unconventional methods treating multiple myeloma
Dee, Dave and Noway,
How refreshing to hear of your experiences and views.
A heartfelt thank you!
I don't know how I missed this thread before ...
Very best,
Mijji
How refreshing to hear of your experiences and views.
A heartfelt thank you!
I don't know how I missed this thread before ...
Very best,
Mijji
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Mijji - When were you/they diagnosed?: 2011
Re: Unconventional methods treating multiple myeloma
Thank you All,
Let's none of us be naive to think that it is not beneath certain unscrupulous people to even masquerade as a myeloma patient in this forum since there is no verification or validation necessary to join and we can all be anonymous.
Beware and don't be gullible.
Best! BN
Let's none of us be naive to think that it is not beneath certain unscrupulous people to even masquerade as a myeloma patient in this forum since there is no verification or validation necessary to join and we can all be anonymous.
Beware and don't be gullible.
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Unconventional methods treating multiple myeloma
This, after all, is the inter-web, or whatever the kids call it. Caveat emptor. Buyer beware.
I have found that, overall, that the web is full of wonderful and amazing things. But many Wikipedia entries are absurd and full of wrong information. Many links and websites of different varieties are garbage. And you can't legislate against stupidity, or control most jacka--es. I am sure the folks who posted links to things believe they did a service. And the folks at the Flat Earth Society and creationists also believe what they preach, even if city slickers like me think they are uneducated hillbillies.
Point is, well, talk to your doctor. Then talk to another one. Reach out to leading myeloma treatment centers and, after you've exhausted the flesh and blood humans, try the online ones, especially most of the ones here. Remember, even for example Steve Jobs was willing to explore ANYTHING, even though he did of course die regretting that he had spent so long attempting to treat his cancer with alternative medicine.
I have found that, overall, that the web is full of wonderful and amazing things. But many Wikipedia entries are absurd and full of wrong information. Many links and websites of different varieties are garbage. And you can't legislate against stupidity, or control most jacka--es. I am sure the folks who posted links to things believe they did a service. And the folks at the Flat Earth Society and creationists also believe what they preach, even if city slickers like me think they are uneducated hillbillies.
Point is, well, talk to your doctor. Then talk to another one. Reach out to leading myeloma treatment centers and, after you've exhausted the flesh and blood humans, try the online ones, especially most of the ones here. Remember, even for example Steve Jobs was willing to explore ANYTHING, even though he did of course die regretting that he had spent so long attempting to treat his cancer with alternative medicine.
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tmcd - Name: TMcD
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 52
Re: Unconventional methods treating multiple myeloma
Hi TMcD,
I think that, in addition to talking with one's doctor, people you meet in a support group, and local cancer agencies, we are fortunate to have the Myeloma Beacon site for comparing and contrasting information. Many readers here are from different countries than the US, where the Beacon originates. Personally, I have learned a lot here!
Don't think you can lump the whole Internet reading experience into one type. You have to be careful as to what you choose to spend time reading. The Internet is now part of our everyday experience of computer literacy.
I think that, in addition to talking with one's doctor, people you meet in a support group, and local cancer agencies, we are fortunate to have the Myeloma Beacon site for comparing and contrasting information. Many readers here are from different countries than the US, where the Beacon originates. Personally, I have learned a lot here!
Don't think you can lump the whole Internet reading experience into one type. You have to be careful as to what you choose to spend time reading. The Internet is now part of our everyday experience of computer literacy.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Unconventional methods treating multiple myeloma
Hello everyone.
Has anybody tried using honokiol?
S Arora et al, "Honokiol: a novel natural agent for cancer prevention and therapy," Current Molecular Medicine, Dec 2012 (full text at PubMed Central)
Abstract:
Honokiol ((3’,5-di-(2-propenyl)-1,1’-biphenyl-2,2’-diol) is a bioactive natural product derived from Magnolia spp. Recent studies have demonstrated anti-inflammatory, anti-angiogenic, anti-oxidative and anti-cancer properties of honokiol in vitro and in preclinical models. Honokiol targets multiple signaling pathways including nuclear factor kappa B (NF-κB), signal transducers and activator of transcription 3 (STAT3), epidermal growth factor receptor (EGFR) and mammalian target of rapamycin (m-TOR), which have great relevance during cancer initiation and progression. Furthermore, pharmacokinetic profile of honokiol has revealed a desirable spectrum of bioavailability after intravenous administration in animal models, thus making it a suitable agent for clinical trials. In this review, we discuss recent data describing the molecular targets of honokiol and its anti-cancer activities against various malignancies in pre-clinical models. Evaluation of honokiol in clinical trials will be the next step towards its possible human applications.
Has anybody tried using honokiol?
S Arora et al, "Honokiol: a novel natural agent for cancer prevention and therapy," Current Molecular Medicine, Dec 2012 (full text at PubMed Central)
Abstract:
Honokiol ((3’,5-di-(2-propenyl)-1,1’-biphenyl-2,2’-diol) is a bioactive natural product derived from Magnolia spp. Recent studies have demonstrated anti-inflammatory, anti-angiogenic, anti-oxidative and anti-cancer properties of honokiol in vitro and in preclinical models. Honokiol targets multiple signaling pathways including nuclear factor kappa B (NF-κB), signal transducers and activator of transcription 3 (STAT3), epidermal growth factor receptor (EGFR) and mammalian target of rapamycin (m-TOR), which have great relevance during cancer initiation and progression. Furthermore, pharmacokinetic profile of honokiol has revealed a desirable spectrum of bioavailability after intravenous administration in animal models, thus making it a suitable agent for clinical trials. In this review, we discuss recent data describing the molecular targets of honokiol and its anti-cancer activities against various malignancies in pre-clinical models. Evaluation of honokiol in clinical trials will be the next step towards its possible human applications.
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outver - Name: Outver
- Who do you know with myeloma?: my friend
- Age at diagnosis: 65
Re: Unconventional methods treating multiple myeloma
Outver,
After my transplant, I will be seeing a doctor who works with honokiol and many other non-pharmaceutical approaches. Apparently he is working with some researchers at Harvard to study honokiol. I will find out more about this in a few months.
I'll let you know how it goes. I'd like to avoid maintenance therapy if possible.
RT
After my transplant, I will be seeing a doctor who works with honokiol and many other non-pharmaceutical approaches. Apparently he is working with some researchers at Harvard to study honokiol. I will find out more about this in a few months.
I'll let you know how it goes. I'd like to avoid maintenance therapy if possible.
RT
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Unconventional methods treating multiple myeloma
Hi,
I'm using unconventional treatment along with Velcade and dex. I'm taking a number of things: cannabis oil and eating leafs, plus curcumin 8 grams a day, ashwagandha, and lactoferrin as bone support .
I have very little side effects and all bloods have returned to normal expect paraprotein, just at 16 down from 54 when I started treatment. I have been on treatment for 8 weeks. I decided to leave out cyclophoshamide as I really felt it was not what I needed.
The thing is everyone is different and this cancer seems to be different for everyone so how can we know what works for one and not work for another?
I try to listen to my body and I get a clear message, and that is to get these numbers down with the least toxicity as I can so my body can hopefully stay in remission for longer.
I also do a lot of listening to Deepak and Eckhart Tolle about healing the body and soul.
This site is great and its been helpful to me, I am grateful. Cheers to everyone that posts.
Corrina
I'm using unconventional treatment along with Velcade and dex. I'm taking a number of things: cannabis oil and eating leafs, plus curcumin 8 grams a day, ashwagandha, and lactoferrin as bone support .
I have very little side effects and all bloods have returned to normal expect paraprotein, just at 16 down from 54 when I started treatment. I have been on treatment for 8 weeks. I decided to leave out cyclophoshamide as I really felt it was not what I needed.
The thing is everyone is different and this cancer seems to be different for everyone so how can we know what works for one and not work for another?
I try to listen to my body and I get a clear message, and that is to get these numbers down with the least toxicity as I can so my body can hopefully stay in remission for longer.
I also do a lot of listening to Deepak and Eckhart Tolle about healing the body and soul.
This site is great and its been helpful to me, I am grateful. Cheers to everyone that posts.
Corrina
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corrina01 - Name: corrina
- Who do you know with myeloma?: me
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 51
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