Hello to all.
I have been reading the Beacon for a while and I thought it was time I join. I was diagnosed September 2012 . At the time, my blood pointed to smoldering myeloma, but November 2012 I had a full body MRI (I refused C-scans and skeletal surveys since I suspect ionizing radiation potentiated my myeloma), and they found a 2 cm lesion in the marrow, so the cancer was active. I was told it was IgG Kappa.
For the next five months I refused chemo, but my cancer was monitored and it remained stable. Then I decided to go the alternative route and spent ten months under the care of Dr. Nicholas Gonzalez.
Well, my cancer got much worse even though I followed his program with military precision. His hair analysis were showing my tumor mass going down, but my blood markers were going up. He mentioned many times that blood was not as accurate as the hair, but cancer progress was clear on two different MRIs. That was irrefutable. Unfortunately, because I had great faith in him.
This week I started Velcade with dexamethasone twice a week under the care of an oncologist at Sloan Kettering in New York. Since I lean towards natural medicine, I am horrified that with those two main drugs you have to take proton pumps and preventive antivirals for shingles, nausea medication, constipation medication, and anxiety medication. YIKES!
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Cassy66 - Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2012
- Age at diagnosis: 55
Re: Hello, new here but not new to myeloma
Welcome to the forum Cassie,
I can certainly appreciate how it must have dashed your hopes when the Gonzalez treatment didn't work for you.
While I absolutely believe in natural medicine, I also believe there is a tipping point where natural medicine just won't cut it against this disease, and that you must rely on conventional treatment. So, while I share your fears and concerns about being on these powerful multiple myeloma drugs, I am also happy that you have sought treatment at Sloane Kettering (which is a great institution for treating multiple myeloma).
I have to be forthcoming and say that while I believe in natural medicine, diet, exercise and faith in combating disease, I have always found Dr. Gonzalez' approach to be something approaching quackery. In retrospect, do you still believe that his approach with hair analysis and pancreatic enzymes is actually legit and that it just didn't work out in your case? I'd also love to hear more about what you actually went through as you were treated on this program. I ask this more for the benefit of others that might consider going down this route.
I hope that your Vd treatment works well for you and is only required for a short period of time.
Again, welcome to the Beacon community.
I can certainly appreciate how it must have dashed your hopes when the Gonzalez treatment didn't work for you.
While I absolutely believe in natural medicine, I also believe there is a tipping point where natural medicine just won't cut it against this disease, and that you must rely on conventional treatment. So, while I share your fears and concerns about being on these powerful multiple myeloma drugs, I am also happy that you have sought treatment at Sloane Kettering (which is a great institution for treating multiple myeloma).
I have to be forthcoming and say that while I believe in natural medicine, diet, exercise and faith in combating disease, I have always found Dr. Gonzalez' approach to be something approaching quackery. In retrospect, do you still believe that his approach with hair analysis and pancreatic enzymes is actually legit and that it just didn't work out in your case? I'd also love to hear more about what you actually went through as you were treated on this program. I ask this more for the benefit of others that might consider going down this route.
I hope that your Vd treatment works well for you and is only required for a short period of time.
Again, welcome to the Beacon community.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Hello, new here but not new to myeloma
Thank you Multibilly!
I would not call Dr. Gonzalez a quack. He truly believes in his program, but, unfortunately, he operates inside a closed system of beliefs and I think this can be very dangerous.
Apparently he has saved people’s lives, but he has lost patients also, perhaps more than he is willing to admit, because his enzymes failed. Not because of noncompliance. He gave me the impression he would rather believe the latter. And I did not like at all his answer when I asked him how come his hair analysis showed my cancer was going down and the MRI clearly showed the opposite.
I can only talk from the perspective of my personal experience, but I will be very happy to continue the discussion about Dr. Gonzalez. Where do you think would it be appropriate in the forum? Just point the way.
Thank you again for your kind welcome!!
I would not call Dr. Gonzalez a quack. He truly believes in his program, but, unfortunately, he operates inside a closed system of beliefs and I think this can be very dangerous.
Apparently he has saved people’s lives, but he has lost patients also, perhaps more than he is willing to admit, because his enzymes failed. Not because of noncompliance. He gave me the impression he would rather believe the latter. And I did not like at all his answer when I asked him how come his hair analysis showed my cancer was going down and the MRI clearly showed the opposite.
I can only talk from the perspective of my personal experience, but I will be very happy to continue the discussion about Dr. Gonzalez. Where do you think would it be appropriate in the forum? Just point the way.
Thank you again for your kind welcome!!
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Cassy66 - Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2012
- Age at diagnosis: 55
Re: Hello, new here but not new to myeloma
Hi Cassy,
Welcome to the forum, and many thanks for introducing yourself and sharing your experiences thus far. We hope you'll be sharing your myeloma-related experiences and insights here for a long, long time
We have set up a thread in the "Treatments & Side Effects" forum where people such as yourself can share their first-hand experiences with the Gonzalez therapy / protocol and other treatments based on the same approach. We'll also include in the thread links to other threads with postings on the subject.
Whenever you have the time, feel free to share your experiences in the new thread, and please don't feel that you need to do so all at once. You can make an initial posting, if you wish, and then fill in more details in later postings.
Welcome to the forum, and many thanks for introducing yourself and sharing your experiences thus far. We hope you'll be sharing your myeloma-related experiences and insights here for a long, long time
We have set up a thread in the "Treatments & Side Effects" forum where people such as yourself can share their first-hand experiences with the Gonzalez therapy / protocol and other treatments based on the same approach. We'll also include in the thread links to other threads with postings on the subject.
Whenever you have the time, feel free to share your experiences in the new thread, and please don't feel that you need to do so all at once. You can make an initial posting, if you wish, and then fill in more details in later postings.
Re: Hello, new here but not new to myeloma
Cassy,
I wish you success in finding a treatment protocol that will get your myeloma under control, at least for a while, hopefully before any significant skeletal and/or kidney damage occurs. From my own experience and reading about others experiences with myeloma on the Beacon, I have seen that early diagnosis and treatment can be critical to preventing significant skeletal and kidney damage and the degradation in quality of life that can occur while the disease remains undiagnosed and treated. I believe Sloan Kettering is a great place to get started with reversing the course of you myeloma progression.
I appreciate you posting your experience with Dr. Gonzalez’s therapy approach. Too often I see that followers of alternative therapies such as Dr. Gonzalez’s are, as you described Dr. Gonzalez, “operat[ing] inside a closed system of beliefs”, while they say the same about those who do not follow their beliefs.
That does not seem to be the case for you. You tried the therapy and, when you saw the evidence that it was not working, you accepted that fact and sought another treatment protocol. Many others do not. I am currently on Revlimid maintenance therapy and I have no doubt that someday it will no longer be effective and I will need to move on to something else. That is what the clinical trials done using the scientific method have shown.
Dr. Gonzalez’s suggesting that it is your fault the therapy is not working because of noncompliance is a big red flag for me. I have read that he has said this before when his therapies did not produce the results he claimed. That his therapy can be a challenge and difficult to follow makes it convenient to blame the patient for poor or non-existent results. I do not see other oncologist blaming their patients for noncompliance when Revlimid, Velcade, pomalidomide [Pomalyst], and the other novel agents and treatment protocols are no longer effective at treating their patient’s myeloma, nor do I see them promising a cure when there is no evidence for a cure.
I wish you success in finding a treatment protocol that will get your myeloma under control, at least for a while, hopefully before any significant skeletal and/or kidney damage occurs. From my own experience and reading about others experiences with myeloma on the Beacon, I have seen that early diagnosis and treatment can be critical to preventing significant skeletal and kidney damage and the degradation in quality of life that can occur while the disease remains undiagnosed and treated. I believe Sloan Kettering is a great place to get started with reversing the course of you myeloma progression.
I appreciate you posting your experience with Dr. Gonzalez’s therapy approach. Too often I see that followers of alternative therapies such as Dr. Gonzalez’s are, as you described Dr. Gonzalez, “operat[ing] inside a closed system of beliefs”, while they say the same about those who do not follow their beliefs.
That does not seem to be the case for you. You tried the therapy and, when you saw the evidence that it was not working, you accepted that fact and sought another treatment protocol. Many others do not. I am currently on Revlimid maintenance therapy and I have no doubt that someday it will no longer be effective and I will need to move on to something else. That is what the clinical trials done using the scientific method have shown.
Dr. Gonzalez’s suggesting that it is your fault the therapy is not working because of noncompliance is a big red flag for me. I have read that he has said this before when his therapies did not produce the results he claimed. That his therapy can be a challenge and difficult to follow makes it convenient to blame the patient for poor or non-existent results. I do not see other oncologist blaming their patients for noncompliance when Revlimid, Velcade, pomalidomide [Pomalyst], and the other novel agents and treatment protocols are no longer effective at treating their patient’s myeloma, nor do I see them promising a cure when there is no evidence for a cure.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Hello, new here but not new to myeloma
Thank you Eric.
I just posted a more detailed account of my experience wirth Dr. Gonzalez and the enzymes following a thread already started about it. I have not been very happy with allopathic doctors in general. That was one reason I had chosen Dr. Gonzalez. But I do love my doctor at Sloan Kettering. She is great.
I just posted a more detailed account of my experience wirth Dr. Gonzalez and the enzymes following a thread already started about it. I have not been very happy with allopathic doctors in general. That was one reason I had chosen Dr. Gonzalez. But I do love my doctor at Sloan Kettering. She is great.
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Cassy66 - Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2012
- Age at diagnosis: 55
6 posts
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