dee777 wrote: "Geremia, just for your information, I only took Revlimid at 10 mg. for 21 days for about 4 months since diagnosis. I was diagnosed before Christmas of 2012. It has been 14 months since diagnosis and I am not on any drugs or chemo. Never took Dex. I am using alternative treatments. I am taking pancreatic enzymes. I am using the Dr. Gonzalez's protocol. It has been successful for Multiple Myeloma. So you can treat it with out chemo. I am doing well. I have IgA and 4;14 translocation and 13 deletion. Started this protocol in October. Living life to the fullest."
Hi Dee,
Would you point me to Doctor Gonzalez' studies on the percentage of patients who achieve success and for how long? It sounds really exciting, and I would love to learn more about this. Thank you, and congratulations!
Forums
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Why not stop chemo and seek alternative treatment?
Hi Geremia.
I went through almost all available chemo agents that are used for multiple myeloma and nothing would really drop my multiple myeloma numbers. I then did two auto SCT's and have been close to undetectable levels of multiple myeloma for 2 and half years. And as a 51 year old father, those 2.5 years have been the best years of my life.
I would not mess around with alternative therapy. If you can find an multiple myeloma specialist who would recommend alternative therapy (with no "real" therapy) for their own loved one (assuming that loved one had multiple myeloma) then ... that would be very interesting. I'm willing to bet there are no multiple myeloma specialists who would do that.
Whichever path you and your mom choose, I hope for the best.
I went through almost all available chemo agents that are used for multiple myeloma and nothing would really drop my multiple myeloma numbers. I then did two auto SCT's and have been close to undetectable levels of multiple myeloma for 2 and half years. And as a 51 year old father, those 2.5 years have been the best years of my life.
I would not mess around with alternative therapy. If you can find an multiple myeloma specialist who would recommend alternative therapy (with no "real" therapy) for their own loved one (assuming that loved one had multiple myeloma) then ... that would be very interesting. I'm willing to bet there are no multiple myeloma specialists who would do that.
Whichever path you and your mom choose, I hope for the best.
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Stann
Re: Why not stop chemo and seek alternative treatment?
We are all obligated to ourselves to do what we feel is best for our own situation. As for me, l choose to NOT go with any alternative treatments a this point.
It seems to me that if there was an alternative therapy that was curing folks of multiple myeloma it would be mainstream therapy and no longer "alternative". I don't buy the argument of the evil "Big Pharma" suppressing cures for ANY diseases because for financial gain. The logistics of making that happen are astronomical to me. Imagine the number of people that would have to be involved to keep it a secret.
I wouldn't be here now if not for modern treatments. I was in horrible pain and sliding downhill fast. Modern medicine turned that around and I am now in CR. Is it a cure? No but I'll take it over where I was when diagnosed.
It seems to me that if there was an alternative therapy that was curing folks of multiple myeloma it would be mainstream therapy and no longer "alternative". I don't buy the argument of the evil "Big Pharma" suppressing cures for ANY diseases because for financial gain. The logistics of making that happen are astronomical to me. Imagine the number of people that would have to be involved to keep it a secret.
I wouldn't be here now if not for modern treatments. I was in horrible pain and sliding downhill fast. Modern medicine turned that around and I am now in CR. Is it a cure? No but I'll take it over where I was when diagnosed.
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Why not stop chemo and seek alternative treatment?
My aunt had brain cancer and went through a lot of experimental chemotherapy and a SCT like we do for myeloma. The treatments did not seem to be having much effect for her and her doctors told her there was nothing else that could be done and her treatments were stopped. She was sent to hospice care and got her affairs in order for what was to come.
For whatever reason, a few weeks after all this they did one last MRI to check the status of her tumor and found it was completely gone. They had no real explanation for this but, sometimes with cancer and experimental treatments, things like this happen. Delayed effect maybe, who knows?
After her chemotherapy treatment was stopped she did not try any alternative treatments, the tumor just disappeared while she was receiving hospice care only.
If she had tried alternative treatments she could very well be convinced that is what cured her when in fact it would have had nothing to do with it. This why clinical trials are done with large population groups because one-off incidents do not really mean a whole lot.
So far after reading this forum for two years I cannot remember anyone saying they had full blown stage III or higher myeloma with renal failure and back pain refuse conventional therapy under these conditions and use alternative therapy only. It seems most users of alternative-only therapy I can recall have MGUS or smoldering myeloma which is not the same thing has having full active myeloma.
There always seem to be these third party reports of someone who knew someone that was cured by alternative therapy but I have yet to see anyone say it happened for me.
One of my concerns about alternative therapy proponents is that they sometimes push the view that conventional and novel agent treatment for myeloma is worse that the disease, that has not been my experience. The treatments are not easiest thing but the myeloma was worse and I know I would be dead now without them.
Having said all that I do believe that eating a well-balanced healthy diet and getting good nutrition will help the body through the chemo treatments. I am also open to the possibility that certain foods may help with or work against treating cancer, but by itself are not going to be a cure or replacement for the new novel agents that have dramatically improved survival times for myeloma. I do take curcumin as there seems to be some evidence that it may help in the fighting myeloma, it is cheap, and is a natural anti-inflammatory, but I have no expectation that curcumin by itself is going to do much for active myeloma.
For whatever reason, a few weeks after all this they did one last MRI to check the status of her tumor and found it was completely gone. They had no real explanation for this but, sometimes with cancer and experimental treatments, things like this happen. Delayed effect maybe, who knows?
After her chemotherapy treatment was stopped she did not try any alternative treatments, the tumor just disappeared while she was receiving hospice care only.
If she had tried alternative treatments she could very well be convinced that is what cured her when in fact it would have had nothing to do with it. This why clinical trials are done with large population groups because one-off incidents do not really mean a whole lot.
So far after reading this forum for two years I cannot remember anyone saying they had full blown stage III or higher myeloma with renal failure and back pain refuse conventional therapy under these conditions and use alternative therapy only. It seems most users of alternative-only therapy I can recall have MGUS or smoldering myeloma which is not the same thing has having full active myeloma.
There always seem to be these third party reports of someone who knew someone that was cured by alternative therapy but I have yet to see anyone say it happened for me.
One of my concerns about alternative therapy proponents is that they sometimes push the view that conventional and novel agent treatment for myeloma is worse that the disease, that has not been my experience. The treatments are not easiest thing but the myeloma was worse and I know I would be dead now without them.
Having said all that I do believe that eating a well-balanced healthy diet and getting good nutrition will help the body through the chemo treatments. I am also open to the possibility that certain foods may help with or work against treating cancer, but by itself are not going to be a cure or replacement for the new novel agents that have dramatically improved survival times for myeloma. I do take curcumin as there seems to be some evidence that it may help in the fighting myeloma, it is cheap, and is a natural anti-inflammatory, but I have no expectation that curcumin by itself is going to do much for active myeloma.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Why not stop chemo and seek alternative treatment?
Eric,
I have full blown multiple myeloma. Dec. of 2012 told I needed transplant. 4;14 and 13 deletion. Kidneys created. Went to 2.7. IgA over 8,000. I refused treatments. Don't know what stage, but I don't think I would be even stage 1, let alone smoldering. Lol! Doing MUCH better though. Best choice I ever made!
I have full blown multiple myeloma. Dec. of 2012 told I needed transplant. 4;14 and 13 deletion. Kidneys created. Went to 2.7. IgA over 8,000. I refused treatments. Don't know what stage, but I don't think I would be even stage 1, let alone smoldering. Lol! Doing MUCH better though. Best choice I ever made!
Re: Why not stop chemo and seek alternative treatment?
Dee,
It is good to see you are doing well and I hope you continue to do so. Please keep us update on your progress with Dr. Gonzalez's and how you are doing for better or worse and I hope this continues to be the best decision of your life.
I recently read about how John Yudkin at the University of London’s Queen Elizabeth College was the lone voice in 1972 sounding the alarm that sugar and not fat was the cause of heart disease. He was widely discredited at the time by his peers and a campaign against his work by the food industry. In recent years his work has come to be seen as prophetic. So I am open to the possibility that sometimes the minority or counter mainstream voice may be right.
In an earlier post on the 24th you had said that you had done 4 months of Revlimid at 10mg 21 day cycles. Though 10mg is below what I know to be the normal dose for induction therapy, 4 cycles of Revlimid does not sound like “refusing treatments”. Four cycles of Velcade and dex put me in nearly complete remission.
I hope your remission continues to last but it I think it is an important point that should not be lost before anyone follows Dr. Gonzalez’s protocol base on your experience that you did complete 4 cycles of novel agents before switching over to Dr. Gonzales’s alternative therapy approaches.
If the therapy continues to provide good results it is important that we hear about that, and it is important that if it does not we hear about that as well. People are making big decisions based on what they read here.
It is good to see you are doing well and I hope you continue to do so. Please keep us update on your progress with Dr. Gonzalez's and how you are doing for better or worse and I hope this continues to be the best decision of your life.
I recently read about how John Yudkin at the University of London’s Queen Elizabeth College was the lone voice in 1972 sounding the alarm that sugar and not fat was the cause of heart disease. He was widely discredited at the time by his peers and a campaign against his work by the food industry. In recent years his work has come to be seen as prophetic. So I am open to the possibility that sometimes the minority or counter mainstream voice may be right.
In an earlier post on the 24th you had said that you had done 4 months of Revlimid at 10mg 21 day cycles. Though 10mg is below what I know to be the normal dose for induction therapy, 4 cycles of Revlimid does not sound like “refusing treatments”. Four cycles of Velcade and dex put me in nearly complete remission.
I hope your remission continues to last but it I think it is an important point that should not be lost before anyone follows Dr. Gonzalez’s protocol base on your experience that you did complete 4 cycles of novel agents before switching over to Dr. Gonzales’s alternative therapy approaches.
If the therapy continues to provide good results it is important that we hear about that, and it is important that if it does not we hear about that as well. People are making big decisions based on what they read here.
Last edited by Eric Hofacket on Thu Feb 27, 2014 8:44 pm, edited 3 times in total.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Why not stop chemo and seek alternative treatment?
Hi Dee,
Like Eric, I had just four cycles of induction chemo, Velcade plus dex. I was quite close to a remission, and went on with more treatments too. High dose chemotherapy with stem cell rescue, and then Revlimid. All of this put me into a complete remission eventually.
What I find a little worrying about your situation is that from what I read in earlier posts, you are not getting the proper blood testing done for a few months while undergoing treatments of a non conventional manner at the clinic you are attending at this time. Thus, to my limited knowledge, you really can't know for sure whether or not you are still in a remission.
I would assume that four cycles of Revlimid plus dex could be considered to be the equivalent of four cycles of Velcade plus dex. The novel agents can sometimes be extremely successful for patients ... and maybe you are one of those fortunate patients too!
I hope that when you do resume the typical tests for myeloma, such as the SPEP and SFLC, that all continues to be well with you. Best wishes to you, and just hoping that you recognize that you have already experienced some of the best myeloma treatments (conventionally speaking) that are available to us.
Like Eric, I had just four cycles of induction chemo, Velcade plus dex. I was quite close to a remission, and went on with more treatments too. High dose chemotherapy with stem cell rescue, and then Revlimid. All of this put me into a complete remission eventually.
What I find a little worrying about your situation is that from what I read in earlier posts, you are not getting the proper blood testing done for a few months while undergoing treatments of a non conventional manner at the clinic you are attending at this time. Thus, to my limited knowledge, you really can't know for sure whether or not you are still in a remission.
I would assume that four cycles of Revlimid plus dex could be considered to be the equivalent of four cycles of Velcade plus dex. The novel agents can sometimes be extremely successful for patients ... and maybe you are one of those fortunate patients too!
I hope that when you do resume the typical tests for myeloma, such as the SPEP and SFLC, that all continues to be well with you. Best wishes to you, and just hoping that you recognize that you have already experienced some of the best myeloma treatments (conventionally speaking) that are available to us.
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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: Why not stop chemo and seek alternative treatment?
Eric and Nancy articulated perfectly what I'd try and write ... but I don't write so good - ha.
I'd just add that anybody who is considering following Dr. Gonzalez's protocol should do some research. Google his name and see what comes up. I don't want to sound like I'm attacking you Dee, I just don't want new, desperate multiple myeloma folks to get talked into his protocol without knowing how he is viewed by mainstream medicine.
http://en.wikipedia.org/wiki/Nicholas_Gonzalez_(physician)
in 1900, life expectancy from birth averaged 48 years. Now it's 80 years or so. Most of that increase is due to modern western medicine. Despite all we hear about plastics, pesticides etc, the overall picture of living in a modern world points to living longer and longer.
To go off the beaten path and not follow the advice of 99.9% of the thousands of doctors who work with myeloma patients does not seem wise.
I'd just add that anybody who is considering following Dr. Gonzalez's protocol should do some research. Google his name and see what comes up. I don't want to sound like I'm attacking you Dee, I just don't want new, desperate multiple myeloma folks to get talked into his protocol without knowing how he is viewed by mainstream medicine.
http://en.wikipedia.org/wiki/Nicholas_Gonzalez_(physician)
in 1900, life expectancy from birth averaged 48 years. Now it's 80 years or so. Most of that increase is due to modern western medicine. Despite all we hear about plastics, pesticides etc, the overall picture of living in a modern world points to living longer and longer.
To go off the beaten path and not follow the advice of 99.9% of the thousands of doctors who work with myeloma patients does not seem wise.
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stann
Re: Why not stop chemo and seek alternative treatment?
I did take Rev. for 4 months.. I also did refuse treatment when diagnosed. I canceled my oncologist appointments, so that is true. Four months later I saw another oncologist and had blood work done. He talked me into the Rev. and I took it for about four months, however the last month I took it every other day. No Dex. I did not go in remission. Nothing changed much and I realized this was just temporary. I wanted a cure. So I have not taken any drugs since Aug. I am not in remission. I am stabilized. Had blood work done by my primary 2weeks ago. Doing it this way does take time. But not everyone goes in remission on the drugs either so don't go there. With 4;14 my remission would be short lived if I got there. And 13 deletion. I have more faith going into remission with pancreatic enzymes but it takes time. I've had 14 great months with my kids, they don't even realize I have cancer, they are young and mom is still mom. I am not down. Rev. made me sick.
Re: Why not stop chemo and seek alternative treatment?
Oh, and I can't tell you Eric how badly I was treated when I was in the hospital after diagnosis. The doctor wanted to send in the hospital oncologist and start treatment right away. I said no. They were furious. Yes, you are right, most would have taken the treatment.
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