Honokiol, as mentioned by outver a few postings ago, is just another example that the established science, with its control, peer reviews and standards for testing, does not keep new / natural medicine out. Just as with Taxol and other "natural" herb/three derivatives.
But do not start self treatment, especially if you suffer from myeloma, since honokiol may cause bleeding.
Forums
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Unconventional methods treating multiple myeloma
Corrina,
Is your oncologist aware and supportive of all the things you are taking? Are you currently on maintenance dose or full-strength dose?
Just curious.
RT
Is your oncologist aware and supportive of all the things you are taking? Are you currently on maintenance dose or full-strength dose?
Just curious.
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 Corinna,
I noticed in your profile that you were diagnosed in October 2013, and that you are "treating myself using diet and supplements" and are "holding off from any treatment". I guess things have changed, given that you're now on Velcade and dex.
It might be helpful for everyone else here if you explained more about what your diagnosis was in October 2013, what alternative therapies you tried, and what effect they seemed to have.
Thanks!
I noticed in your profile that you were diagnosed in October 2013, and that you are "treating myself using diet and supplements" and are "holding off from any treatment". I guess things have changed, given that you're now on Velcade and dex.
It might be helpful for everyone else here if you explained more about what your diagnosis was in October 2013, what alternative therapies you tried, and what effect they seemed to have.
Thanks!
Re: Unconventional methods treating multiple myeloma
I am relieved that there is a thread with some that are on the same page as I am, searching for alternative options to either pair with conventional therapies or do instead of conventional therapies.
I am a dietitian by trade and I believe wholeheartedly that food is medicine. I wrote a simple post about something in another thread and felt somewhat lashed out on about my "outlandish" question.
I just feel like some people are so closed-minded to the idea that maybe, just MAYBE, the answer (the CURE) lies in something naturally occurring versus man-made. As you probably know, there are plentiful articles out there boasting the benefit of various supplements in treating all cancers (included myeloma). I am happy to see that some people on this board are open to the idea that maybe there are alternative roads to take .... or at least alternative things to try along with conventional therapies.
I am a dietitian by trade and I believe wholeheartedly that food is medicine. I wrote a simple post about something in another thread and felt somewhat lashed out on about my "outlandish" question.
I just feel like some people are so closed-minded to the idea that maybe, just MAYBE, the answer (the CURE) lies in something naturally occurring versus man-made. As you probably know, there are plentiful articles out there boasting the benefit of various supplements in treating all cancers (included myeloma). I am happy to see that some people on this board are open to the idea that maybe there are alternative roads to take .... or at least alternative things to try along with conventional therapies.
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melissaanne - Name: Melissa
- Who do you know with myeloma?: My Mother
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 49
Re: Unconventional methods treating multiple myeloma
Hi melissaanne,
It's so hard when your mother is diagnosed with myeloma, isn't it? Especially when you're so young, and she is too. Believe me, I know.
I think your work as a dietician gives you great perspective. And I agree with you on the healing powers of food – I always think that when my mom's appetite is back, it means things are on the upswing! I bet that your knowledge will be invaluable to your mother, especially since nausea and a loss of appetite are not uncommon side effects of myeloma treatments.
One thing I've discovered on this journey is that oncologists / hematologists are, for the most part, incredibly caring people. I truly believe that my mother's myeloma specialist would GLADLY give up her medical license tomorrow if the cure for myeloma were to be found.
Sadly, we're not there yet. But when I think of the INCREDIBLE advances that have been made since Mom was diagnosed in 2008, it makes me very hopeful. As doctors and scientists learn more and more about myeloma, they seem to be getting closer to their goal of treatments that kill myeloma cells while sparing others and increasing the quality of life.
For better or worse every, and I do mean every, myeloma patient is different. That said, most of the long-lived survivors I know have undergone typical, medical standard of treatments. Is natural wrong? No. But I think people just don't want you to pin hopes on something that hasn't been subjected to rigorous study and testing. Do your own research, but please encourage your mother to tell her doctor anything she has been taking. And remember – it's a team effort. It's her life, but believe me, as the experts, they really are going to recommend the therapies that will extend her life.
Keep your chin up and keep posting on the Beacon. There are lots of different opinions here, but it's an incredible source of support.
You and your mom will be in my thoughts as you move forward with treatment.
It's so hard when your mother is diagnosed with myeloma, isn't it? Especially when you're so young, and she is too. Believe me, I know.
I think your work as a dietician gives you great perspective. And I agree with you on the healing powers of food – I always think that when my mom's appetite is back, it means things are on the upswing! I bet that your knowledge will be invaluable to your mother, especially since nausea and a loss of appetite are not uncommon side effects of myeloma treatments.
One thing I've discovered on this journey is that oncologists / hematologists are, for the most part, incredibly caring people. I truly believe that my mother's myeloma specialist would GLADLY give up her medical license tomorrow if the cure for myeloma were to be found.
Sadly, we're not there yet. But when I think of the INCREDIBLE advances that have been made since Mom was diagnosed in 2008, it makes me very hopeful. As doctors and scientists learn more and more about myeloma, they seem to be getting closer to their goal of treatments that kill myeloma cells while sparing others and increasing the quality of life.
For better or worse every, and I do mean every, myeloma patient is different. That said, most of the long-lived survivors I know have undergone typical, medical standard of treatments. Is natural wrong? No. But I think people just don't want you to pin hopes on something that hasn't been subjected to rigorous study and testing. Do your own research, but please encourage your mother to tell her doctor anything she has been taking. And remember – it's a team effort. It's her life, but believe me, as the experts, they really are going to recommend the therapies that will extend her life.
Keep your chin up and keep posting on the Beacon. There are lots of different opinions here, but it's an incredible source of support.
You and your mom will be in my thoughts as you move forward with treatment.
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: Unconventional methods treating multiple myeloma
BeatMyeloma -
Thank you so much for your kind words! I agree ... having your mother suddenly diagnosed with something such as this is so hard on us 'kids'. I feel like our rolls have been reversed and now I am HER caretaker. It's such an odd feeling. It is encouraging to see that your mom is doing well 7 years after diagnosis. I pray that continues for her!
I do see what you're saying regarding modern medicine that has been rigorously tested and documented. I don't think she'd ever completely forego modern medicine in order to try alternative therapy. I just think there are some things you can add to your treatment plan (vitamins, herbs, etc) that could have a positive benefit.
We've been told by doctors that nutrition has nothing to do with cancer and that just boggles my mind. I believe that nutrition DOES play a part and a big one at that. I believe that food is medicine and as much as we want to believe that a magic drug exists, there just isn't one (yet). So I guess the best we can do is arm ourselves with the most knowledge possible and make decisions from there.
I really appreciate you reaching out. It's hard being as young as I am (27) and dealing with a mom who is going through this. I will continue to stay positive. I believe we are so close to a cure ... whatever that cure ends up being.
Thank you so much for your kind words! I agree ... having your mother suddenly diagnosed with something such as this is so hard on us 'kids'. I feel like our rolls have been reversed and now I am HER caretaker. It's such an odd feeling. It is encouraging to see that your mom is doing well 7 years after diagnosis. I pray that continues for her!
I do see what you're saying regarding modern medicine that has been rigorously tested and documented. I don't think she'd ever completely forego modern medicine in order to try alternative therapy. I just think there are some things you can add to your treatment plan (vitamins, herbs, etc) that could have a positive benefit.
We've been told by doctors that nutrition has nothing to do with cancer and that just boggles my mind. I believe that nutrition DOES play a part and a big one at that. I believe that food is medicine and as much as we want to believe that a magic drug exists, there just isn't one (yet). So I guess the best we can do is arm ourselves with the most knowledge possible and make decisions from there.
I really appreciate you reaching out. It's hard being as young as I am (27) and dealing with a mom who is going through this. I will continue to stay positive. I believe we are so close to a cure ... whatever that cure ends up being
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melissaanne - Name: Melissa
- Who do you know with myeloma?: My Mother
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 49
Re: Unconventional methods treating multiple myeloma
Hi,
My oncologist does and has known right from the start. I believe it so important to be up front with your oncologist.
As for the other post
I was diagnosed in October 2013 with 25% plasma cells. Skeletal survey clear. I started intravenous vitamin C for 3 months and this gave me a huge lift and I felt well for some time, even had a holiday to Cambodia.
So from then on I started looking at what else is out there for me. I gave up work, moved to the country. I stayed in good health for some time over a year. I was taking cannabis oil, and juicing everyday, plus supplements and eating only real food, no sugar .
By 2015 my paraprotein was up to 54% and my oncologist was keen to start treatment.
I do believe that taking curcumin and other supplements has helped with side effects and it is nice to have a normal hemoglobin. Although I not taking cyclophosphamide.
I have changed a lot of things in my life in regards to how I think about things and the way I deal with stress I believe I have a good balance.
I don't compare my cancer to others. We are all different .
Cheers
My oncologist does and has known right from the start. I believe it so important to be up front with your oncologist.
As for the other post
I was diagnosed in October 2013 with 25% plasma cells. Skeletal survey clear. I started intravenous vitamin C for 3 months and this gave me a huge lift and I felt well for some time, even had a holiday to Cambodia.
So from then on I started looking at what else is out there for me. I gave up work, moved to the country. I stayed in good health for some time over a year. I was taking cannabis oil, and juicing everyday, plus supplements and eating only real food, no sugar .
By 2015 my paraprotein was up to 54% and my oncologist was keen to start treatment.
I do believe that taking curcumin and other supplements has helped with side effects and it is nice to have a normal hemoglobin. Although I not taking cyclophosphamide.
I have changed a lot of things in my life in regards to how I think about things and the way I deal with stress I believe I have a good balance.
I don't compare my cancer to others. We are all different .
Cheers
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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
Re: Unconventional methods treating multiple myeloma
I wanted to post a bit of an update here. I want to clarify that my Mom is currently using a combined method of conventional medicine (radiation) along with some basic nutrition methods to help combat this.
She finished radiation today (25 sessions) and she literally "feels AMAZING!" This is how she keeps describing it. She felt terrible come Week 3 of radiation. She was so run down and was getting through the day with numerous naps. We talked and came up with a nutrition regimen and literally, within days, her energy skyrocketed and she felt light-years better. She is doing very well...and I just hope people have an open-mind to what food and nutrition can do to help!
She finished radiation today (25 sessions) and she literally "feels AMAZING!" This is how she keeps describing it. She felt terrible come Week 3 of radiation. She was so run down and was getting through the day with numerous naps. We talked and came up with a nutrition regimen and literally, within days, her energy skyrocketed and she felt light-years better. She is doing very well...and I just hope people have an open-mind to what food and nutrition can do to help!
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melissaanne - Name: Melissa
- Who do you know with myeloma?: My Mother
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 49
Re: Unconventional methods treating multiple myeloma
melissaanne,
What nutrition foods did you feed your mom, and what was her kappa count at start of treatment?
Thanks,
diane
What nutrition foods did you feed your mom, and what was her kappa count at start of treatment?
Thanks,
diane
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Dmahl
Re: Unconventional methods treating multiple myeloma
Hi,
Just wondering if anyone has any additional perspectives on alternative therapies that could be used to enhance and / or support standard multiple myeloma therapy?
My wife is very keen on exploring alternative options, but there are so many options, like ozone therapy, high-dose vitamin C infusions, and I was wondering if anyone has insights or experience with these.
Thanks,
Grant
Just wondering if anyone has any additional perspectives on alternative therapies that could be used to enhance and / or support standard multiple myeloma therapy?
My wife is very keen on exploring alternative options, but there are so many options, like ozone therapy, high-dose vitamin C infusions, and I was wondering if anyone has insights or experience with these.
Thanks,
Grant
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Grant - Name: Grant
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 43
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