Dave wrote:
> Hi Dee,
>.... The treatment consisted of intravenous vitamin B & C, blood ozone
> therapy, magnetic field therapy, local hypothermia and one course of
> extreme whole body hypothermia. There were also daily supplements to boost
> the immune system.
>
Hi Dave,
Did you mean to say "hyperthermia", not "hypothermia"?
Multibilly
Forums
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Unconventional methods treating multiple myeloma
Thanks - yes it is hyperthermia. You get a real sweat up, requiring up to 6 liters of water to replace lost fluids.
-
Dave - Name: Dave
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 38
Re: Unconventional methods treating multiple myeloma
Thanks Dave. FYI for the larger audience:
http://www.cancer.gov/cancertopics/factsheet/Therapy/hyperthermia
http://www.cancer.gov/cancertopics/factsheet/Therapy/hyperthermia
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Unconventional methods treating multiple myeloma
Hello everyone,
I am writing on behalf of my brother in law who was just diagnosed March 8, 2013. He is 62 and very active.Tennis every week. I am just trying to connect with people who have traveled this path before us and learn about alternative therapies that have worked.
I never heard before that people with multiple myeloma are born to alkaline. Is this true?
I would be grateful for any supporting info that anyone has to share.
I am writing on behalf of my brother in law who was just diagnosed March 8, 2013. He is 62 and very active.Tennis every week. I am just trying to connect with people who have traveled this path before us and learn about alternative therapies that have worked.
I never heard before that people with multiple myeloma are born to alkaline. Is this true?
I would be grateful for any supporting info that anyone has to share.
Re: Unconventional methods treating multiple myeloma
Hi Joon,
Sorry to hear that your brother has joined the club. You don't mention what stage of multiple myeloma your brother is at.
My personal philosophy on alternative treatments is that they may help in the case of smoldering multiple myeloma and MGUS (some people have done well by curcumin, inositol, IP6, etc ... others have not). Note that I'm currently experimenting with these as I am only smoldering right now and don't require conventional treatment. But there are no hard scientific studies to really back any of my hopes up, just some anecdotal accounts.
Alternative treatments and supplements may also help with conventional treatments, as some on this site will also testify. But I would personally proceed carefully if you are thinking of completely replacing conventional treatments with alternative medications. I personally believe there is a point where there is simply no choice but to engage with conventional chemo treatments but I also respect those that choose otherwise. I also believe in only doing a stem cell transplant as a last resort, but that is just my opinion and I've only been in this club since last fall. You can find a good discussion on the stem cell and first round chemo treatment subject here.
You will also find that there are legit studies out there being conducted regarding the use of hyperthermic treatments to improve the response of cancer treatments.
Again, all this is just my opinion. You will find many other opinions on this site and I'm in no way trying to say that I'm right or they're wrong. Good luck ... knowledge is power.
Sorry to hear that your brother has joined the club. You don't mention what stage of multiple myeloma your brother is at.
My personal philosophy on alternative treatments is that they may help in the case of smoldering multiple myeloma and MGUS (some people have done well by curcumin, inositol, IP6, etc ... others have not). Note that I'm currently experimenting with these as I am only smoldering right now and don't require conventional treatment. But there are no hard scientific studies to really back any of my hopes up, just some anecdotal accounts.
Alternative treatments and supplements may also help with conventional treatments, as some on this site will also testify. But I would personally proceed carefully if you are thinking of completely replacing conventional treatments with alternative medications. I personally believe there is a point where there is simply no choice but to engage with conventional chemo treatments but I also respect those that choose otherwise. I also believe in only doing a stem cell transplant as a last resort, but that is just my opinion and I've only been in this club since last fall. You can find a good discussion on the stem cell and first round chemo treatment subject here.
You will also find that there are legit studies out there being conducted regarding the use of hyperthermic treatments to improve the response of cancer treatments.
Again, all this is just my opinion. You will find many other opinions on this site and I'm in no way trying to say that I'm right or they're wrong. Good luck ... knowledge is power.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Unconventional methods treating multiple myeloma
I have to agree with Multibilly on this one. From diagnosis I was adamant that natural supplements and treatments would give the body the strength to fight the myeloma, boost the immune system and not harm the body in the process.
I tried all sorts of treatments, too numerous to mention, until I became gravely ill when about 6 weeks ago my kappa went to 14,000 (normal figure in Australia is less than 3). I was stage 3 and in kidney failure, acute myeloid leukemia, dangerously high calcium, bone marrow failure, and tumor lysis syndrome. I was a sick little monkey!
Doctor gave me 2 weeks survival without chemotherapy.
I had no choice but to go straight to DT-PACE, intravenously, for 4 days straight. Very intense given the amount of tumors that had been broken down by the chemo. It felt like I had literally lost my mind for 2 or so days.
After my second round of DT-PACE I am now recovering strength for a SC harvest and possible transplant with melphalan - but the plan when CR is achieved is to definitely return to natural supplements including detoxing.
I am a strong believer in the use of natural supplements. Each individual has specific needs and depending on the state of the disease etc will determine how effective or ineffective these will be.
Good luck to everyone dealing with multiple myeloma. It is not easy.
Dave
I tried all sorts of treatments, too numerous to mention, until I became gravely ill when about 6 weeks ago my kappa went to 14,000 (normal figure in Australia is less than 3). I was stage 3 and in kidney failure, acute myeloid leukemia, dangerously high calcium, bone marrow failure, and tumor lysis syndrome. I was a sick little monkey!
Doctor gave me 2 weeks survival without chemotherapy.
I had no choice but to go straight to DT-PACE, intravenously, for 4 days straight. Very intense given the amount of tumors that had been broken down by the chemo. It felt like I had literally lost my mind for 2 or so days.
After my second round of DT-PACE I am now recovering strength for a SC harvest and possible transplant with melphalan - but the plan when CR is achieved is to definitely return to natural supplements including detoxing.
I am a strong believer in the use of natural supplements. Each individual has specific needs and depending on the state of the disease etc will determine how effective or ineffective these will be.
Good luck to everyone dealing with multiple myeloma. It is not easy.
Dave
-
Dave - Name: Dave
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 38
Re: Unconventional methods treating multiple myeloma
Has anyone tried using low dose naltrexone along with their supplements?
Re: Unconventional methods treating multiple myeloma
Hi Guys,
My father was diagnosed 4 weeks ago with 3rd stage myeloma. The doctor said paraprotein level was at 50? He had his 1st cycle of chemo. Starting his second on Friday.
I don't understand why cancer treatment is set standard for all cancers. Weaken the immune system, kill everything, and hope it replenishes with a better system whereas, with a flu, they would advise you to boost your immune system?
I've got in contact with a herbalist in Turkey who is extremely confident with himself, but Australian customs apparently don't let his liquid solutions in.
In the mean time I've got dad on 800mg of flax seed oil, 400mg of co-q10, and want to start curcumin and black cumin oil despite the doctor's disapproval. I just don't know the start off dosage and how often.
Also dad's a diabetic, his blood sugar level went down to 1.5. I just read flaxseed may have that effect.
Advice will be much appreciated
My father was diagnosed 4 weeks ago with 3rd stage myeloma. The doctor said paraprotein level was at 50? He had his 1st cycle of chemo. Starting his second on Friday.
I don't understand why cancer treatment is set standard for all cancers. Weaken the immune system, kill everything, and hope it replenishes with a better system whereas, with a flu, they would advise you to boost your immune system?
I've got in contact with a herbalist in Turkey who is extremely confident with himself, but Australian customs apparently don't let his liquid solutions in.
In the mean time I've got dad on 800mg of flax seed oil, 400mg of co-q10, and want to start curcumin and black cumin oil despite the doctor's disapproval. I just don't know the start off dosage and how often.
Also dad's a diabetic, his blood sugar level went down to 1.5. I just read flaxseed may have that effect.
Advice will be much appreciated
Re: Unconventional methods treating multiple myeloma
Hi Icedavinci,
Good you found the Beacon, for it is a top site for getting useful medical information about myeloma.
I am sorry to hear that your father has stage 3 myeloma, but it's good to know that he is getting treated in Australia, which has a really good health care system. Would you mind sharing what his initial chemotherapies are? Has he reached the end of a cycle and had his blood counts tested yet?
I am not a fan of alternative medicines, since the treatments used at our cancer centre have been very helpful to me (and sufficient). I think it is an oversimplification to state that cancer treatment is a set standard for all cancers. There are differing treatments for different cancers. Even in the realm of blood cancers, differing treatments are used. For myeloma, there are proteasome inhibitors, immunomodulatory agents and also antibody treatments, for example. These treatments work to modify just one part of one's immune system -- the cancerous part.
Good luck to you both!
Good you found the Beacon, for it is a top site for getting useful medical information about myeloma.
I am sorry to hear that your father has stage 3 myeloma, but it's good to know that he is getting treated in Australia, which has a really good health care system. Would you mind sharing what his initial chemotherapies are? Has he reached the end of a cycle and had his blood counts tested yet?
I am not a fan of alternative medicines, since the treatments used at our cancer centre have been very helpful to me (and sufficient). I think it is an oversimplification to state that cancer treatment is a set standard for all cancers. There are differing treatments for different cancers. Even in the realm of blood cancers, differing treatments are used. For myeloma, there are proteasome inhibitors, immunomodulatory agents and also antibody treatments, for example. These treatments work to modify just one part of one's immune system -- the cancerous part.
Good luck to you both!
-
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,
I must say I am fascinated by this entire thread. My heart goes out to Dave, who fought the good fight with natural supplements and alternative medicine, and I wish him the best. I truly wish I had seen some of these posts much sooner because I think I have some key information to contribute.
When I was diagnosed with MGUS in 2005, I embarked on a mission to prevent progression of the disease and live the healthiest lifestyle possible, to create an alkaline environment, and promote healthy homeostasis and cell metabolism. I read a lot of books. I started with "Fantastic Voyage" by Ray Kersweil, which was well written for the layman, and a truly fascinating read, and I moved on from there, reading many groundbreaking solutions to remaining healthy.
I led a life of true health for 9 years, eating organic, exercising regularly, taking Thorne supplements (including high quality curcumin in later years), drinking alkaline water, and I even purchased a large infrared sauna to promote hyperthermia at home. And I was faithful to these treatments each week. I even quit coffee and consumed antioxidant tea as though it was life's elixir.
Nine years is a long time for living this lifestyle and it was very expensive and very time consuming. Since I was in MGUS status when I started this regimen, it wasn't an alternative therapy. Instead, it was just what made good sense to stay healthy in an earnest effort to stave off progression. (Even still, surely nine years is longer than any clinical trial, and my actions these last years should be given consideration in determining the validity of lifestyle as an alternative therapy?)
Needless to say, my disease moves and I am now smoldering and pretty sick. Sick enough that I blow up this forum on a daily basis and sick enough that I am truly eager for the day when conventional treatment is an option for me. A healthy lifestyle will always be good practice, but I believe it makes little difference in treating multiple myeloma. We will never know if my lifestyle adoption slowed progression or not, but we do know that it was definitely not preventative.
I hope someone will find this information useful. My advice is to be reasonable with alternative choices and don't spend a lot of money on them. Vacations are more important.
J
I must say I am fascinated by this entire thread. My heart goes out to Dave, who fought the good fight with natural supplements and alternative medicine, and I wish him the best. I truly wish I had seen some of these posts much sooner because I think I have some key information to contribute.
When I was diagnosed with MGUS in 2005, I embarked on a mission to prevent progression of the disease and live the healthiest lifestyle possible, to create an alkaline environment, and promote healthy homeostasis and cell metabolism. I read a lot of books. I started with "Fantastic Voyage" by Ray Kersweil, which was well written for the layman, and a truly fascinating read, and I moved on from there, reading many groundbreaking solutions to remaining healthy.
I led a life of true health for 9 years, eating organic, exercising regularly, taking Thorne supplements (including high quality curcumin in later years), drinking alkaline water, and I even purchased a large infrared sauna to promote hyperthermia at home. And I was faithful to these treatments each week. I even quit coffee and consumed antioxidant tea as though it was life's elixir.
Nine years is a long time for living this lifestyle and it was very expensive and very time consuming. Since I was in MGUS status when I started this regimen, it wasn't an alternative therapy. Instead, it was just what made good sense to stay healthy in an earnest effort to stave off progression. (Even still, surely nine years is longer than any clinical trial, and my actions these last years should be given consideration in determining the validity of lifestyle as an alternative therapy?)
Needless to say, my disease moves and I am now smoldering and pretty sick. Sick enough that I blow up this forum on a daily basis and sick enough that I am truly eager for the day when conventional treatment is an option for me. A healthy lifestyle will always be good practice, but I believe it makes little difference in treating multiple myeloma. We will never know if my lifestyle adoption slowed progression or not, but we do know that it was definitely not preventative.
I hope someone will find this information useful. My advice is to be reasonable with alternative choices and don't spend a lot of money on them. Vacations are more important.
J
-
jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Return to Treatments & Side Effects