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Stage IV – personal update

Forums General Melanoma Community Stage IV – personal update

  • Post
    DZnDef
    Participant

      Hi all,

      I just had my follow up CT scan on June 9th with Dr. Steven O'Day at the Beverly Hills Cancer Center.  My previous  scan was February 7th.  I had met with Dr. O'Day a couple of months prior and had asked him if he thought I had time (given the status of my cancer) to first address my overall health before beginning treatment.  He thought that would be ok (though its not a request he hears often) as I had two small tumors in my lung (13mm and 9 mm) and no where else.  I am also BRAF V600E so if the tumors got out of control, he was confident he could shrink them with a BRAF inhibitor before putting me on Yervoy.  He also referred me to a Naturopath that he has worked closely with in the past.

      I quit my job (too stressful and thankfully, we can live on one income), radically changed my diet and began supplementing (under my Naturopath's advice).  I had just over one month of that under my belt before the June 9th scans.

      The full body CT scan showed no new tumors anywhere.  Other random pre-existing spots were unchanged (unknown if those are melanoma or not – likely not per the radiologist).  The two known melanomas in the lung each grew by 1 mm over the 4 month interval.

      Dr. O'Day suggested that I keep doing what I'm doing if I'm comfortable with that and to scan again in 3 or 4 months.

      I confess that I'm curious to see if I can favorably impact this disease using natural methods.  I'm willing to be my own guinea pig for this experiment as I feel comfortable that Dr. O'Day has my back if I fail and the melanoma decides to go wild.  I feel very fortunate to have an understanding doctor and the personal freedom to pursue my own health full time.  I was hoping for better news than I got, but it could have been a lot worse and I do have more things I'd like to try before resorting to chemicals if I have time.  Plus, I feel better than I have in years.  So, keeping my fingers crossed that it stays under control.

      I hope you are all doing well,

      Maggie

    Viewing 11 reply threads
    • Replies
        joelcairo
        Participant

          I'm not aware of any natural therapy that can compete with BRAF inhibitors or Yervoy in terms of effectiveness. And you need to get treated FAST, not in a few months when the tumors have grown and spread.

          Most people in your situation, I end up having to talk them down and convince them there is hope for longterm survival. In your case, I think you have too much hope. If you're going to live, I think you need to develop a sense of urgency. Not panic or stress, but urgency.

          You have to do what works. Nobody's a bigger fan of (scientifically founded) alternative therapies than I am, but there's no reason you can't do one or the other of these standard treatments in addition to lifestyle changes and adjuvant therapies.

           

           

          joelcairo
          Participant

            I'm not aware of any natural therapy that can compete with BRAF inhibitors or Yervoy in terms of effectiveness. And you need to get treated FAST, not in a few months when the tumors have grown and spread.

            Most people in your situation, I end up having to talk them down and convince them there is hope for longterm survival. In your case, I think you have too much hope. If you're going to live, I think you need to develop a sense of urgency. Not panic or stress, but urgency.

            You have to do what works. Nobody's a bigger fan of (scientifically founded) alternative therapies than I am, but there's no reason you can't do one or the other of these standard treatments in addition to lifestyle changes and adjuvant therapies.

             

             

              DZnDef
              Participant

                Hi Joel, thank you so much for your concern and advice.  I truly appreciate it.  I don't believe I have too much hope.  The Yervoy and Anti-PD1 will either work for me or they won't.  If they work for me, they will work for me three months from now as well.  If they won't work for me, then I don't see any reason to rush into using them.  Once the disease has spread, I will start treatment.  I have been Stage IV since July of 2012.  The disease is unique for each of us and mine appears to be slower than most.  Most people view alternative treatments as a last resort when all others have failed.  I have chosen to start with alternative and to use drug treatments as a last resort if alternative fails.  I accept the risks that go with that approach.  I am not aware of a definitive cure for Melanoma in either the conventional or the alternative circles.  I'm choosing to go from least toxic to most toxic in my treatment approach.  The drugs are there for me if I need them.

                DZnDef
                Participant

                  Hi Joel, thank you so much for your concern and advice.  I truly appreciate it.  I don't believe I have too much hope.  The Yervoy and Anti-PD1 will either work for me or they won't.  If they work for me, they will work for me three months from now as well.  If they won't work for me, then I don't see any reason to rush into using them.  Once the disease has spread, I will start treatment.  I have been Stage IV since July of 2012.  The disease is unique for each of us and mine appears to be slower than most.  Most people view alternative treatments as a last resort when all others have failed.  I have chosen to start with alternative and to use drug treatments as a last resort if alternative fails.  I accept the risks that go with that approach.  I am not aware of a definitive cure for Melanoma in either the conventional or the alternative circles.  I'm choosing to go from least toxic to most toxic in my treatment approach.  The drugs are there for me if I need them.

                  DZnDef
                  Participant

                    Hi Joel, thank you so much for your concern and advice.  I truly appreciate it.  I don't believe I have too much hope.  The Yervoy and Anti-PD1 will either work for me or they won't.  If they work for me, they will work for me three months from now as well.  If they won't work for me, then I don't see any reason to rush into using them.  Once the disease has spread, I will start treatment.  I have been Stage IV since July of 2012.  The disease is unique for each of us and mine appears to be slower than most.  Most people view alternative treatments as a last resort when all others have failed.  I have chosen to start with alternative and to use drug treatments as a last resort if alternative fails.  I accept the risks that go with that approach.  I am not aware of a definitive cure for Melanoma in either the conventional or the alternative circles.  I'm choosing to go from least toxic to most toxic in my treatment approach.  The drugs are there for me if I need them.

                  joelcairo
                  Participant

                    I'm not aware of any natural therapy that can compete with BRAF inhibitors or Yervoy in terms of effectiveness. And you need to get treated FAST, not in a few months when the tumors have grown and spread.

                    Most people in your situation, I end up having to talk them down and convince them there is hope for longterm survival. In your case, I think you have too much hope. If you're going to live, I think you need to develop a sense of urgency. Not panic or stress, but urgency.

                    You have to do what works. Nobody's a bigger fan of (scientifically founded) alternative therapies than I am, but there's no reason you can't do one or the other of these standard treatments in addition to lifestyle changes and adjuvant therapies.

                     

                     

                    Swanee
                    Participant

                      Hi Maggie!  I just wanted to chime in and share my scenario with you.  I was diagnosed Stage IV, no primary from the beginning, I have been in battle for 4 yrs. with this disease.  While I'm not opposed to the treatments that have been presented to me, I tend to lean towards the wait and watch approach, surgery to remove out of control tumors and putting a lot of emphasis on the naturopathic/diet approach.  I have done this with limited success, but I strongly feel I would be in a worse situation if I did not follow such a path. There are so many things that we can do naturopathically and I cannot say for certain if what I'm doing has made the difference for me.  What I can tell you is this, I have spent a great deal of time comparing my journey with so many others and the one common thread  that I have with so many long term survivors is the use of flax oil.  Initially, I followed the Budwig diet, which is all about flax oil and a plant based diet. However, after a year, I gradually switched back to a more american diet, greatly reducing my red meats and eating more veggies and consistently having a flax shake every day.  What impressed me about this diet is that it affected my skin in a most positive way.  Dry, flakey skin dissappeared and other conditions like cracks on the heels of my feet and other conditions like dry eyes also disappeared.   So with confidence, I continue to be a flax oil user and have read many other survivors stories of continued use of flax oil in their diet.  Most have not been disease free, but certainly have a much slower progression.  I seem to be a mystery with my doctors and I keep telling them I think it's the flax oil but they don't think so!  I also do other supplements, but flax oil is the only supplement  I have in common with long term survivors.   This is just food for thought, something for you to research and figure out for yourself, but I am a firm believer in this Budwig diet protoccol.  Hope this helps!  

                      Best wishes for continued good health!

                      Swanee 

                      Swanee
                      Participant

                        Hi Maggie!  I just wanted to chime in and share my scenario with you.  I was diagnosed Stage IV, no primary from the beginning, I have been in battle for 4 yrs. with this disease.  While I'm not opposed to the treatments that have been presented to me, I tend to lean towards the wait and watch approach, surgery to remove out of control tumors and putting a lot of emphasis on the naturopathic/diet approach.  I have done this with limited success, but I strongly feel I would be in a worse situation if I did not follow such a path. There are so many things that we can do naturopathically and I cannot say for certain if what I'm doing has made the difference for me.  What I can tell you is this, I have spent a great deal of time comparing my journey with so many others and the one common thread  that I have with so many long term survivors is the use of flax oil.  Initially, I followed the Budwig diet, which is all about flax oil and a plant based diet. However, after a year, I gradually switched back to a more american diet, greatly reducing my red meats and eating more veggies and consistently having a flax shake every day.  What impressed me about this diet is that it affected my skin in a most positive way.  Dry, flakey skin dissappeared and other conditions like cracks on the heels of my feet and other conditions like dry eyes also disappeared.   So with confidence, I continue to be a flax oil user and have read many other survivors stories of continued use of flax oil in their diet.  Most have not been disease free, but certainly have a much slower progression.  I seem to be a mystery with my doctors and I keep telling them I think it's the flax oil but they don't think so!  I also do other supplements, but flax oil is the only supplement  I have in common with long term survivors.   This is just food for thought, something for you to research and figure out for yourself, but I am a firm believer in this Budwig diet protoccol.  Hope this helps!  

                        Best wishes for continued good health!

                        Swanee 

                          DZnDef
                          Participant

                            Hi Swanee!  Thanks for your note!  I read your profile (thanks for posting it) and see that you've been through a lot.  I'm glad you have been stable.  I've read some about flaxseed oil (mixed with cottage cheese?) and the Budwig diet.  My Naturopath is not a fan.  Everything she gives me she hands over medical studies proving effectiveness and I guess there isn't one for the Budwig protocol?  I tell her I don't have time to wait until everything is proven, anecdotal is good enough for me right now smiley,  I too am looking for common threads in various survival stories I've heard about.  Beta Glucan is another one I haven't tried yet.  I'll look more into flaxseed oil seeing as it has helped you.  Thanks for the tip!

                            Be well,

                            Maggie

                            DZnDef
                            Participant

                              Hi Swanee!  Thanks for your note!  I read your profile (thanks for posting it) and see that you've been through a lot.  I'm glad you have been stable.  I've read some about flaxseed oil (mixed with cottage cheese?) and the Budwig diet.  My Naturopath is not a fan.  Everything she gives me she hands over medical studies proving effectiveness and I guess there isn't one for the Budwig protocol?  I tell her I don't have time to wait until everything is proven, anecdotal is good enough for me right now smiley,  I too am looking for common threads in various survival stories I've heard about.  Beta Glucan is another one I haven't tried yet.  I'll look more into flaxseed oil seeing as it has helped you.  Thanks for the tip!

                              Be well,

                              Maggie

                              Swanee
                              Participant

                                Hi Maggie,

                                The only reason I have stuck with the flax oil, if for no other reason, it has greatly helped my skin.  My gut feeling is that if it improves the condition of my skin, then I feel like it's making my skin healthier and stronger and that can't be a bad thing when you're fighting a disease that is attacking your skin!  I was also told by naturopathic doctor, that the Budwig diet has no scientific effectiveness, but I do believe it does for me.  Everyone's journey here is a bit different than the next and we all make decisions based on our own basic values and gut feelings.  Some want to throw every treatment they can get their hands on at this disease, others more cautious, weighing out the risks vs. benefits.  It's a fine line and a tight rope walk and you really have to stay positive and strong  in the choices you make.  I actually felt a gut wrenching feeling right before the first ipi injection and wanted to flee, something didn't feel right, and I couldn't explain it.  But I was to embarrassed to suddenly change my mind and then I experienced a life threatening reaction that took me a long time to recover from and was told I was in the 2% who have experienced this severe of a reaction.

                                I'm one of the luckier ones, with a slower progression and I choose to believe it's my mindset, positive thinking and diet, however, I'm not so naive about this beast to think that. that alone will save me but I'm sure it's helping me greatly.  I live well and do not allow myself any self pity, life is to short and I don't want to waste a moment allowing this disease to have any more time than it's already taken from me.

                                Wishing you continued success in your search for your magic potion!

                                Swanee

                                Swanee
                                Participant

                                  Hi Maggie,

                                  The only reason I have stuck with the flax oil, if for no other reason, it has greatly helped my skin.  My gut feeling is that if it improves the condition of my skin, then I feel like it's making my skin healthier and stronger and that can't be a bad thing when you're fighting a disease that is attacking your skin!  I was also told by naturopathic doctor, that the Budwig diet has no scientific effectiveness, but I do believe it does for me.  Everyone's journey here is a bit different than the next and we all make decisions based on our own basic values and gut feelings.  Some want to throw every treatment they can get their hands on at this disease, others more cautious, weighing out the risks vs. benefits.  It's a fine line and a tight rope walk and you really have to stay positive and strong  in the choices you make.  I actually felt a gut wrenching feeling right before the first ipi injection and wanted to flee, something didn't feel right, and I couldn't explain it.  But I was to embarrassed to suddenly change my mind and then I experienced a life threatening reaction that took me a long time to recover from and was told I was in the 2% who have experienced this severe of a reaction.

                                  I'm one of the luckier ones, with a slower progression and I choose to believe it's my mindset, positive thinking and diet, however, I'm not so naive about this beast to think that. that alone will save me but I'm sure it's helping me greatly.  I live well and do not allow myself any self pity, life is to short and I don't want to waste a moment allowing this disease to have any more time than it's already taken from me.

                                  Wishing you continued success in your search for your magic potion!

                                  Swanee

                                  Swanee
                                  Participant

                                    Hi Maggie,

                                    The only reason I have stuck with the flax oil, if for no other reason, it has greatly helped my skin.  My gut feeling is that if it improves the condition of my skin, then I feel like it's making my skin healthier and stronger and that can't be a bad thing when you're fighting a disease that is attacking your skin!  I was also told by naturopathic doctor, that the Budwig diet has no scientific effectiveness, but I do believe it does for me.  Everyone's journey here is a bit different than the next and we all make decisions based on our own basic values and gut feelings.  Some want to throw every treatment they can get their hands on at this disease, others more cautious, weighing out the risks vs. benefits.  It's a fine line and a tight rope walk and you really have to stay positive and strong  in the choices you make.  I actually felt a gut wrenching feeling right before the first ipi injection and wanted to flee, something didn't feel right, and I couldn't explain it.  But I was to embarrassed to suddenly change my mind and then I experienced a life threatening reaction that took me a long time to recover from and was told I was in the 2% who have experienced this severe of a reaction.

                                    I'm one of the luckier ones, with a slower progression and I choose to believe it's my mindset, positive thinking and diet, however, I'm not so naive about this beast to think that. that alone will save me but I'm sure it's helping me greatly.  I live well and do not allow myself any self pity, life is to short and I don't want to waste a moment allowing this disease to have any more time than it's already taken from me.

                                    Wishing you continued success in your search for your magic potion!

                                    Swanee

                                    DZnDef
                                    Participant

                                      Hi Swanee!  Thanks for your note!  I read your profile (thanks for posting it) and see that you've been through a lot.  I'm glad you have been stable.  I've read some about flaxseed oil (mixed with cottage cheese?) and the Budwig diet.  My Naturopath is not a fan.  Everything she gives me she hands over medical studies proving effectiveness and I guess there isn't one for the Budwig protocol?  I tell her I don't have time to wait until everything is proven, anecdotal is good enough for me right now smiley,  I too am looking for common threads in various survival stories I've heard about.  Beta Glucan is another one I haven't tried yet.  I'll look more into flaxseed oil seeing as it has helped you.  Thanks for the tip!

                                      Be well,

                                      Maggie

                                    Swanee
                                    Participant

                                      Hi Maggie!  I just wanted to chime in and share my scenario with you.  I was diagnosed Stage IV, no primary from the beginning, I have been in battle for 4 yrs. with this disease.  While I'm not opposed to the treatments that have been presented to me, I tend to lean towards the wait and watch approach, surgery to remove out of control tumors and putting a lot of emphasis on the naturopathic/diet approach.  I have done this with limited success, but I strongly feel I would be in a worse situation if I did not follow such a path. There are so many things that we can do naturopathically and I cannot say for certain if what I'm doing has made the difference for me.  What I can tell you is this, I have spent a great deal of time comparing my journey with so many others and the one common thread  that I have with so many long term survivors is the use of flax oil.  Initially, I followed the Budwig diet, which is all about flax oil and a plant based diet. However, after a year, I gradually switched back to a more american diet, greatly reducing my red meats and eating more veggies and consistently having a flax shake every day.  What impressed me about this diet is that it affected my skin in a most positive way.  Dry, flakey skin dissappeared and other conditions like cracks on the heels of my feet and other conditions like dry eyes also disappeared.   So with confidence, I continue to be a flax oil user and have read many other survivors stories of continued use of flax oil in their diet.  Most have not been disease free, but certainly have a much slower progression.  I seem to be a mystery with my doctors and I keep telling them I think it's the flax oil but they don't think so!  I also do other supplements, but flax oil is the only supplement  I have in common with long term survivors.   This is just food for thought, something for you to research and figure out for yourself, but I am a firm believer in this Budwig diet protoccol.  Hope this helps!  

                                      Best wishes for continued good health!

                                      Swanee 

                                      Sherron
                                      Participant

                                        Hi, most of you will not know me.  Swanee may remember me, maybe.  My husband was diagnosed in July 2006…and he went totally alternative on everything.  He had Nodular Melanoma on the right side lower scalp on the right side.  He did not do the WLE, SNB…nothing.  He had a mitosis of greater than 5, and it was already vascular invasive.  He was a total optomist in all areas of his life… and this was no different.  He was all about living the best life he could, working, fishing, and being with family.  He did not want any surgery, any drugs.  He put himself on many different alternative combinations…We spent lots of money each money each month.  And for 4 years he did excellent, not missing one day of work.  Toward the middle of August I noticed a decrease in appetite, and a decline in his energy level.  I knew the Beast was at work…And at that time it became agressive.  He started getting tumors everywhere on his body, and it went to his intestines finally..The last 3 months were very difficult watching him decline from the once strong man I knew and loved for nearly 43 years.  In fact, the Angels came for Jim 4 days before our 43rd anniversary.  He was an optomist, a man of courage, and a zest and love of life and enjoyed life his way.  He even worked 1 day in October.  He passed away on Nov 30, 2010.  I miss him so much.  He did it his way.

                                        Our story is under profile Sherron

                                        Everyone take care,

                                        Sherron, wife of Jim Forever and Always

                                         

                                        Sherron
                                        Participant

                                          Hi, most of you will not know me.  Swanee may remember me, maybe.  My husband was diagnosed in July 2006…and he went totally alternative on everything.  He had Nodular Melanoma on the right side lower scalp on the right side.  He did not do the WLE, SNB…nothing.  He had a mitosis of greater than 5, and it was already vascular invasive.  He was a total optomist in all areas of his life… and this was no different.  He was all about living the best life he could, working, fishing, and being with family.  He did not want any surgery, any drugs.  He put himself on many different alternative combinations…We spent lots of money each money each month.  And for 4 years he did excellent, not missing one day of work.  Toward the middle of August I noticed a decrease in appetite, and a decline in his energy level.  I knew the Beast was at work…And at that time it became agressive.  He started getting tumors everywhere on his body, and it went to his intestines finally..The last 3 months were very difficult watching him decline from the once strong man I knew and loved for nearly 43 years.  In fact, the Angels came for Jim 4 days before our 43rd anniversary.  He was an optomist, a man of courage, and a zest and love of life and enjoyed life his way.  He even worked 1 day in October.  He passed away on Nov 30, 2010.  I miss him so much.  He did it his way.

                                          Our story is under profile Sherron

                                          Everyone take care,

                                          Sherron, wife of Jim Forever and Always

                                           

                                            killmel
                                            Participant

                                              Hi Maggie,

                                               

                                              I read your profile.I live in S.California so please tell me more about Naturopath. I am very interested. What are you doing and taking under the guidance of Naturopath. Please give me the contact info for your Naturopath.

                                              Thanks,

                                              Marybeth

                                               

                                              killmel
                                              Participant

                                                Hi Maggie,

                                                 

                                                I read your profile.I live in S.California so please tell me more about Naturopath. I am very interested. What are you doing and taking under the guidance of Naturopath. Please give me the contact info for your Naturopath.

                                                Thanks,

                                                Marybeth

                                                 

                                                DZnDef
                                                Participant

                                                  Hi Marybeth,

                                                  The Naturopath I am working with is Kristin Stiles Green, NMD.  She is in Thousand Oaks and accepts some insurance (I have Cigna which she accepts).  She is a medically trained doctor and can write prescriptions.  She is very conservative in her natural/holistic approach to medicine in that she only recommends supplements that are backed by studies (though rarely in the US – not many US studies on supplements) and she will hand you copies of those studies.

                                                  She is currently affiliated with Neuron Medical Corporation.  You can find her on their website:  Neuronmedical.com.  She has a bio there and contact information.

                                                  She performed many blood tests on me and based on the results prescribed the following protocol for me.  Everyone's health situation is unique so she would likey advise you to take different things or doses.  But for your reference, here is what she has me taking right now:

                                                  Nature-Throid – 16.25mg/day – to address previously untreated hypothyroidism (prescription required)

                                                  Supplements (no prescription needed):

                                                  Iron Bisglycinate – 50mg/day – to treat previously untreated anemia.  It is NOT a good idea to take iron when you have cancer because it tends to make cancer happy.  However, I am anemic so she wanted me to take it just for a month or two.

                                                  Vitamin D3 – 10,000 IU / day – I was vitamin D deficient.  Unclear if this will help with cancer.

                                                  Curcumin – 2,300 mg / day – melanogenisis inhibition

                                                  Green Tea – 275mg/day – Antitumor activity

                                                  CoEnzyme Q10 – 100mg/day – improved melanoma survival

                                                  Melatonin – 10mg/day – stabilizing metastatic melanoma

                                                  Apart from the above, I have been following a Paleo diet (you can google that), though she recommends I follow a more vegetarian diet based on my blood type (type A).  A Paleo diet would be more appropriate for blood type O, if you subscribe to the blood type theory of eating.  She (and all doctors) also recommends that I exercise regularly, which I haven't done yet.  I'm very lucky to have a lazy version of this cancer (so far).

                                                  I've considered seeing someone else because I want to "do more" than the above.  But my results so far seem pretty decent, so I'm sticking with her for now.  Once I start the drugs, she will work closely with my oncologist to minimize side effects, maximize effectiveness and ensure that nothing I am taking is interfering with the treatment.

                                                  Hope you find that useful.  Do you have a profile posted?  I see you post as "Anonymous".

                                                  Maggie

                                                  DZnDef
                                                  Participant

                                                    Hi Marybeth,

                                                    The Naturopath I am working with is Kristin Stiles Green, NMD.  She is in Thousand Oaks and accepts some insurance (I have Cigna which she accepts).  She is a medically trained doctor and can write prescriptions.  She is very conservative in her natural/holistic approach to medicine in that she only recommends supplements that are backed by studies (though rarely in the US – not many US studies on supplements) and she will hand you copies of those studies.

                                                    She is currently affiliated with Neuron Medical Corporation.  You can find her on their website:  Neuronmedical.com.  She has a bio there and contact information.

                                                    She performed many blood tests on me and based on the results prescribed the following protocol for me.  Everyone's health situation is unique so she would likey advise you to take different things or doses.  But for your reference, here is what she has me taking right now:

                                                    Nature-Throid – 16.25mg/day – to address previously untreated hypothyroidism (prescription required)

                                                    Supplements (no prescription needed):

                                                    Iron Bisglycinate – 50mg/day – to treat previously untreated anemia.  It is NOT a good idea to take iron when you have cancer because it tends to make cancer happy.  However, I am anemic so she wanted me to take it just for a month or two.

                                                    Vitamin D3 – 10,000 IU / day – I was vitamin D deficient.  Unclear if this will help with cancer.

                                                    Curcumin – 2,300 mg / day – melanogenisis inhibition

                                                    Green Tea – 275mg/day – Antitumor activity

                                                    CoEnzyme Q10 – 100mg/day – improved melanoma survival

                                                    Melatonin – 10mg/day – stabilizing metastatic melanoma

                                                    Apart from the above, I have been following a Paleo diet (you can google that), though she recommends I follow a more vegetarian diet based on my blood type (type A).  A Paleo diet would be more appropriate for blood type O, if you subscribe to the blood type theory of eating.  She (and all doctors) also recommends that I exercise regularly, which I haven't done yet.  I'm very lucky to have a lazy version of this cancer (so far).

                                                    I've considered seeing someone else because I want to "do more" than the above.  But my results so far seem pretty decent, so I'm sticking with her for now.  Once I start the drugs, she will work closely with my oncologist to minimize side effects, maximize effectiveness and ensure that nothing I am taking is interfering with the treatment.

                                                    Hope you find that useful.  Do you have a profile posted?  I see you post as "Anonymous".

                                                    Maggie

                                                    DZnDef
                                                    Participant

                                                      Hi Marybeth,

                                                      The Naturopath I am working with is Kristin Stiles Green, NMD.  She is in Thousand Oaks and accepts some insurance (I have Cigna which she accepts).  She is a medically trained doctor and can write prescriptions.  She is very conservative in her natural/holistic approach to medicine in that she only recommends supplements that are backed by studies (though rarely in the US – not many US studies on supplements) and she will hand you copies of those studies.

                                                      She is currently affiliated with Neuron Medical Corporation.  You can find her on their website:  Neuronmedical.com.  She has a bio there and contact information.

                                                      She performed many blood tests on me and based on the results prescribed the following protocol for me.  Everyone's health situation is unique so she would likey advise you to take different things or doses.  But for your reference, here is what she has me taking right now:

                                                      Nature-Throid – 16.25mg/day – to address previously untreated hypothyroidism (prescription required)

                                                      Supplements (no prescription needed):

                                                      Iron Bisglycinate – 50mg/day – to treat previously untreated anemia.  It is NOT a good idea to take iron when you have cancer because it tends to make cancer happy.  However, I am anemic so she wanted me to take it just for a month or two.

                                                      Vitamin D3 – 10,000 IU / day – I was vitamin D deficient.  Unclear if this will help with cancer.

                                                      Curcumin – 2,300 mg / day – melanogenisis inhibition

                                                      Green Tea – 275mg/day – Antitumor activity

                                                      CoEnzyme Q10 – 100mg/day – improved melanoma survival

                                                      Melatonin – 10mg/day – stabilizing metastatic melanoma

                                                      Apart from the above, I have been following a Paleo diet (you can google that), though she recommends I follow a more vegetarian diet based on my blood type (type A).  A Paleo diet would be more appropriate for blood type O, if you subscribe to the blood type theory of eating.  She (and all doctors) also recommends that I exercise regularly, which I haven't done yet.  I'm very lucky to have a lazy version of this cancer (so far).

                                                      I've considered seeing someone else because I want to "do more" than the above.  But my results so far seem pretty decent, so I'm sticking with her for now.  Once I start the drugs, she will work closely with my oncologist to minimize side effects, maximize effectiveness and ensure that nothing I am taking is interfering with the treatment.

                                                      Hope you find that useful.  Do you have a profile posted?  I see you post as "Anonymous".

                                                      Maggie

                                                      killmel
                                                      Participant

                                                        Hi Maggie,

                                                         

                                                        I read your profile.I live in S.California so please tell me more about Naturopath. I am very interested. What are you doing and taking under the guidance of Naturopath. Please give me the contact info for your Naturopath.

                                                        Thanks,

                                                        Marybeth

                                                         

                                                        Swanee
                                                        Participant

                                                          Hi Sherron!  Always good to see a post from you!  Your journey with melanoma touched me deeply and I will never forget Jim's story.  It is Jim's story that gives me strength everyday to stay strong in the choices I make, knowing I am doing it my way and I am in charge.  I continue to be well, going about it in a little different way but with continued success and hope for tomorrow.

                                                          How are you?  I think of you often and hoping that life has turned the corner and you are finally healing from your loss of Jim.  We don't know if another way might have worked for Jim, but we do know that it was Jim's desire to do it his way, retaining his quality of life for almost 5 years.  He might have died sooner, had he tried all that was available to him and lived miserably, You must always honor his choices and stay positive and that it was the right path for Jim.  I can't believe it's been almost 4 years!

                                                          Take care and please feel free to contact me!

                                                          Swanee

                                                          Swanee
                                                          Participant

                                                            Hi Sherron!  Always good to see a post from you!  Your journey with melanoma touched me deeply and I will never forget Jim's story.  It is Jim's story that gives me strength everyday to stay strong in the choices I make, knowing I am doing it my way and I am in charge.  I continue to be well, going about it in a little different way but with continued success and hope for tomorrow.

                                                            How are you?  I think of you often and hoping that life has turned the corner and you are finally healing from your loss of Jim.  We don't know if another way might have worked for Jim, but we do know that it was Jim's desire to do it his way, retaining his quality of life for almost 5 years.  He might have died sooner, had he tried all that was available to him and lived miserably, You must always honor his choices and stay positive and that it was the right path for Jim.  I can't believe it's been almost 4 years!

                                                            Take care and please feel free to contact me!

                                                            Swanee

                                                            Sherron
                                                            Participant

                                                              Swanee, my e-mail is [email protected]…send me your e-mail….please…my computer may be out off for a few days…son in law is doing some work on it.  I'd love to visit with you….you can find me on Facebook, under Sherron Turner Clevenger.

                                                              Sherron
                                                              Participant

                                                                Swanee, my e-mail is [email protected]…send me your e-mail….please…my computer may be out off for a few days…son in law is doing some work on it.  I'd love to visit with you….you can find me on Facebook, under Sherron Turner Clevenger.

                                                                Swanee
                                                                Participant

                                                                  I've sent messages to both contacts, so hopefully we'll be chatting soon!  Thanks Sherron!

                                                                   

                                                                  Swanee
                                                                  Participant

                                                                    I've sent messages to both contacts, so hopefully we'll be chatting soon!  Thanks Sherron!

                                                                     

                                                                    Swanee
                                                                    Participant

                                                                      I've sent messages to both contacts, so hopefully we'll be chatting soon!  Thanks Sherron!

                                                                       

                                                                      Sherron
                                                                      Participant

                                                                        Swanee, my e-mail is [email protected]…send me your e-mail….please…my computer may be out off for a few days…son in law is doing some work on it.  I'd love to visit with you….you can find me on Facebook, under Sherron Turner Clevenger.

                                                                        Swanee
                                                                        Participant

                                                                          Hi Sherron!  Always good to see a post from you!  Your journey with melanoma touched me deeply and I will never forget Jim's story.  It is Jim's story that gives me strength everyday to stay strong in the choices I make, knowing I am doing it my way and I am in charge.  I continue to be well, going about it in a little different way but with continued success and hope for tomorrow.

                                                                          How are you?  I think of you often and hoping that life has turned the corner and you are finally healing from your loss of Jim.  We don't know if another way might have worked for Jim, but we do know that it was Jim's desire to do it his way, retaining his quality of life for almost 5 years.  He might have died sooner, had he tried all that was available to him and lived miserably, You must always honor his choices and stay positive and that it was the right path for Jim.  I can't believe it's been almost 4 years!

                                                                          Take care and please feel free to contact me!

                                                                          Swanee

                                                                          DZnDef
                                                                          Participant

                                                                            Sherron, I am so sorry that you have lost your most wonderful husband.  He sounds like a very special man.  I hope you have been able to find some joy in life since his passing and that you have a strong support system.  I lost my father in 2010 (the best man to ever have lived) and I grieved too deeply and for too long.  I had melanoma in my lung in 2012.  I don't believe that is a coincidence.  Grief can wreak havoc on our health and immune system.   No doubt he would want you to be as happy and healthy as you could possibly manage to be.

                                                                            Be well,

                                                                            Maggie

                                                                            DZnDef
                                                                            Participant

                                                                              Sherron, I am so sorry that you have lost your most wonderful husband.  He sounds like a very special man.  I hope you have been able to find some joy in life since his passing and that you have a strong support system.  I lost my father in 2010 (the best man to ever have lived) and I grieved too deeply and for too long.  I had melanoma in my lung in 2012.  I don't believe that is a coincidence.  Grief can wreak havoc on our health and immune system.   No doubt he would want you to be as happy and healthy as you could possibly manage to be.

                                                                              Be well,

                                                                              Maggie

                                                                              DZnDef
                                                                              Participant

                                                                                Sherron, I am so sorry that you have lost your most wonderful husband.  He sounds like a very special man.  I hope you have been able to find some joy in life since his passing and that you have a strong support system.  I lost my father in 2010 (the best man to ever have lived) and I grieved too deeply and for too long.  I had melanoma in my lung in 2012.  I don't believe that is a coincidence.  Grief can wreak havoc on our health and immune system.   No doubt he would want you to be as happy and healthy as you could possibly manage to be.

                                                                                Be well,

                                                                                Maggie

                                                                              Sherron
                                                                              Participant

                                                                                Hi, most of you will not know me.  Swanee may remember me, maybe.  My husband was diagnosed in July 2006…and he went totally alternative on everything.  He had Nodular Melanoma on the right side lower scalp on the right side.  He did not do the WLE, SNB…nothing.  He had a mitosis of greater than 5, and it was already vascular invasive.  He was a total optomist in all areas of his life… and this was no different.  He was all about living the best life he could, working, fishing, and being with family.  He did not want any surgery, any drugs.  He put himself on many different alternative combinations…We spent lots of money each money each month.  And for 4 years he did excellent, not missing one day of work.  Toward the middle of August I noticed a decrease in appetite, and a decline in his energy level.  I knew the Beast was at work…And at that time it became agressive.  He started getting tumors everywhere on his body, and it went to his intestines finally..The last 3 months were very difficult watching him decline from the once strong man I knew and loved for nearly 43 years.  In fact, the Angels came for Jim 4 days before our 43rd anniversary.  He was an optomist, a man of courage, and a zest and love of life and enjoyed life his way.  He even worked 1 day in October.  He passed away on Nov 30, 2010.  I miss him so much.  He did it his way.

                                                                                Our story is under profile Sherron

                                                                                Everyone take care,

                                                                                Sherron, wife of Jim Forever and Always

                                                                                 

                                                                                joelcairo
                                                                                Participant

                                                                                  I agree with Marybeth, it would be helpful to know more specifically the main things you are doing as part of your natural treatment. I ask this because, to be blunt, some alt therapies have solid evidence that they provide benefit, and others don't.

                                                                                  For example, flaxseed mentioned above has a remarkable amount of published clinical evidence supporting its value in treating different types of cancer.

                                                                                  Other elements of the excessively rigid Gerson Diet don't make as much sense to me. Cottage cheese? I'm not aware of any particular benefit this provides. No olive oil? This is wrong. Not allowed to eat berries? This is insane, it's scandalously bad advice IMO.

                                                                                  Anyway, below is one reference, a review of clinical studies of flax as a preventative and as a treatment of breast cancer. I can only link to the abstract (summary), but university libraries or hospital libraries in your area may be able to get you access to the full text.

                                                                                  Flax and Breast Cancer: A Systematic Review

                                                                                  http://ict.sagepub.com/content/13/3/181

                                                                                  As for melanoma, I don't have a cite showing benefits in human patients, but here's a sample study showing a significant benefit of flaxseed consumption in mice.

                                                                                  Dietary flaxseed supplementation and experimental metastasis of melanoma cells in mice

                                                                                  http://www.sciencedirect.com/science/article/pii/S0304383597004709
                                                                                   

                                                                                  joelcairo
                                                                                  Participant

                                                                                    I agree with Marybeth, it would be helpful to know more specifically the main things you are doing as part of your natural treatment. I ask this because, to be blunt, some alt therapies have solid evidence that they provide benefit, and others don't.

                                                                                    For example, flaxseed mentioned above has a remarkable amount of published clinical evidence supporting its value in treating different types of cancer.

                                                                                    Other elements of the excessively rigid Gerson Diet don't make as much sense to me. Cottage cheese? I'm not aware of any particular benefit this provides. No olive oil? This is wrong. Not allowed to eat berries? This is insane, it's scandalously bad advice IMO.

                                                                                    Anyway, below is one reference, a review of clinical studies of flax as a preventative and as a treatment of breast cancer. I can only link to the abstract (summary), but university libraries or hospital libraries in your area may be able to get you access to the full text.

                                                                                    Flax and Breast Cancer: A Systematic Review

                                                                                    http://ict.sagepub.com/content/13/3/181

                                                                                    As for melanoma, I don't have a cite showing benefits in human patients, but here's a sample study showing a significant benefit of flaxseed consumption in mice.

                                                                                    Dietary flaxseed supplementation and experimental metastasis of melanoma cells in mice

                                                                                    http://www.sciencedirect.com/science/article/pii/S0304383597004709
                                                                                     

                                                                                      Swanee
                                                                                      Participant

                                                                                        Hi Joel,

                                                                                        Not sure who you are addressing here?  I'm not reading any comments in the posts that mention Gerson Diet, cottage cheese, no olive oil or berries?  Did I miss something?

                                                                                        As for me, I clearly stated I have no scientific data to prove or disprove my own regimen, only stating that it has helped me with several skin conditions and I feel has made my skin healthier and my own common sense tells me that's probably a good thing!  I'm only sharing my experience with others and not claiming any cure here.  I think people just like reading what other's are doing, regardless if they are interested or not!  

                                                                                        Hope this helps, sorry for any confusion!

                                                                                        Swanee

                                                                                        Swanee
                                                                                        Participant

                                                                                          Hi Joel,

                                                                                          Not sure who you are addressing here?  I'm not reading any comments in the posts that mention Gerson Diet, cottage cheese, no olive oil or berries?  Did I miss something?

                                                                                          As for me, I clearly stated I have no scientific data to prove or disprove my own regimen, only stating that it has helped me with several skin conditions and I feel has made my skin healthier and my own common sense tells me that's probably a good thing!  I'm only sharing my experience with others and not claiming any cure here.  I think people just like reading what other's are doing, regardless if they are interested or not!  

                                                                                          Hope this helps, sorry for any confusion!

                                                                                          Swanee

                                                                                          joelcairo
                                                                                          Participant

                                                                                            If you read the post, I'm PROVIDING you with research showing that the flaxseed approach is valid. You're welcome.

                                                                                            As for Gerson, it's one of the most common alternative therapies and most people who are into flaxseed are on that regimen or else Budwig (the cottage cheese thing is actually from Budwig). If you're not, fine.

                                                                                             

                                                                                            joelcairo
                                                                                            Participant

                                                                                              If you read the post, I'm PROVIDING you with research showing that the flaxseed approach is valid. You're welcome.

                                                                                              As for Gerson, it's one of the most common alternative therapies and most people who are into flaxseed are on that regimen or else Budwig (the cottage cheese thing is actually from Budwig). If you're not, fine.

                                                                                               

                                                                                              Swanee
                                                                                              Participant

                                                                                                No worries Joel.   Yes, I do have plenty of my own research to verify the benefits of flax oil.  I don't know if you have thoroughly looked into the Budwig diet or just quickly briefed it.  You might be interested to know that the cottage cheese is the catalyst for the flax oil,so that the body can absorb and benefit from the flax oil.  If you just tried drinking the same amount, it would quickly pass through your system with little benefit to your  body.  I've read of others mixing flax oil with yogurt as well, but it's not really the cottage cheese or yogurt that you're benefiting from, it's just the messenger.  Hope this helps!

                                                                                                Take care,

                                                                                                Swanee 

                                                                                                Swanee
                                                                                                Participant

                                                                                                  No worries Joel.   Yes, I do have plenty of my own research to verify the benefits of flax oil.  I don't know if you have thoroughly looked into the Budwig diet or just quickly briefed it.  You might be interested to know that the cottage cheese is the catalyst for the flax oil,so that the body can absorb and benefit from the flax oil.  If you just tried drinking the same amount, it would quickly pass through your system with little benefit to your  body.  I've read of others mixing flax oil with yogurt as well, but it's not really the cottage cheese or yogurt that you're benefiting from, it's just the messenger.  Hope this helps!

                                                                                                  Take care,

                                                                                                  Swanee 

                                                                                                  Swanee
                                                                                                  Participant

                                                                                                    No worries Joel.   Yes, I do have plenty of my own research to verify the benefits of flax oil.  I don't know if you have thoroughly looked into the Budwig diet or just quickly briefed it.  You might be interested to know that the cottage cheese is the catalyst for the flax oil,so that the body can absorb and benefit from the flax oil.  If you just tried drinking the same amount, it would quickly pass through your system with little benefit to your  body.  I've read of others mixing flax oil with yogurt as well, but it's not really the cottage cheese or yogurt that you're benefiting from, it's just the messenger.  Hope this helps!

                                                                                                    Take care,

                                                                                                    Swanee 

                                                                                                    joelcairo
                                                                                                    Participant

                                                                                                      If you read the post, I'm PROVIDING you with research showing that the flaxseed approach is valid. You're welcome.

                                                                                                      As for Gerson, it's one of the most common alternative therapies and most people who are into flaxseed are on that regimen or else Budwig (the cottage cheese thing is actually from Budwig). If you're not, fine.

                                                                                                       

                                                                                                      Swanee
                                                                                                      Participant

                                                                                                        Hi Joel,

                                                                                                        Not sure who you are addressing here?  I'm not reading any comments in the posts that mention Gerson Diet, cottage cheese, no olive oil or berries?  Did I miss something?

                                                                                                        As for me, I clearly stated I have no scientific data to prove or disprove my own regimen, only stating that it has helped me with several skin conditions and I feel has made my skin healthier and my own common sense tells me that's probably a good thing!  I'm only sharing my experience with others and not claiming any cure here.  I think people just like reading what other's are doing, regardless if they are interested or not!  

                                                                                                        Hope this helps, sorry for any confusion!

                                                                                                        Swanee

                                                                                                      joelcairo
                                                                                                      Participant

                                                                                                        I agree with Marybeth, it would be helpful to know more specifically the main things you are doing as part of your natural treatment. I ask this because, to be blunt, some alt therapies have solid evidence that they provide benefit, and others don't.

                                                                                                        For example, flaxseed mentioned above has a remarkable amount of published clinical evidence supporting its value in treating different types of cancer.

                                                                                                        Other elements of the excessively rigid Gerson Diet don't make as much sense to me. Cottage cheese? I'm not aware of any particular benefit this provides. No olive oil? This is wrong. Not allowed to eat berries? This is insane, it's scandalously bad advice IMO.

                                                                                                        Anyway, below is one reference, a review of clinical studies of flax as a preventative and as a treatment of breast cancer. I can only link to the abstract (summary), but university libraries or hospital libraries in your area may be able to get you access to the full text.

                                                                                                        Flax and Breast Cancer: A Systematic Review

                                                                                                        http://ict.sagepub.com/content/13/3/181

                                                                                                        As for melanoma, I don't have a cite showing benefits in human patients, but here's a sample study showing a significant benefit of flaxseed consumption in mice.

                                                                                                        Dietary flaxseed supplementation and experimental metastasis of melanoma cells in mice

                                                                                                        http://www.sciencedirect.com/science/article/pii/S0304383597004709
                                                                                                         

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