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Alternative medicine, lifestyle changes?

Forums General Melanoma Community Alternative medicine, lifestyle changes?

  • Post
    VeraB
    Participant

      Hi all! 

      So suffering from all the side effects of immunotherapy I became curious to see if there are any alternative or maybe supplemental treatment options. There is so much literature on herbal medicine, dietary changes, etc. 

      Just wanted to see if anybody has tried any holistic approaches? What lifestyle changes have you guys made since the diagnosis? Im trying to change my diet now and eat cleaner, maybe try to stay active with some yoga. Any suggestions? 

       

      Thanks! 

    Viewing 11 reply threads
    • Replies
        Bubbles
        Participant

          I have eaten all the vegetables…even the ones others can't pronounce my entire life.  I've never been overweight.  I've never been a sun worshipper.  I've always exercised…running most days.  All the same I was diagnosed with Stage III melanoma in 2003.  I continued my healthy lifestyle and still progressed to Stage IV in 2010.  After a nivo/Opdivo trial for 2 1/2 years….I am still NED… and still running and eating my veggies (chicken with onions and mushrooms with brussies and carrots tonight!!!).  So…take that info as you will. I do drink wine and take vit D.  Here is the latest data on all things alternative that beats melanoma:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/everything-cures-melanomaredux5.html

          I wish you well.  Celeste

            VeraB
            Participant

              Thank you Celeste! 

              VeraB
              Participant

                Thank you Celeste! 

                VeraB
                Participant

                  Thank you Celeste! 

                Bubbles
                Participant

                  I have eaten all the vegetables…even the ones others can't pronounce my entire life.  I've never been overweight.  I've never been a sun worshipper.  I've always exercised…running most days.  All the same I was diagnosed with Stage III melanoma in 2003.  I continued my healthy lifestyle and still progressed to Stage IV in 2010.  After a nivo/Opdivo trial for 2 1/2 years….I am still NED… and still running and eating my veggies (chicken with onions and mushrooms with brussies and carrots tonight!!!).  So…take that info as you will. I do drink wine and take vit D.  Here is the latest data on all things alternative that beats melanoma:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/everything-cures-melanomaredux5.html

                  I wish you well.  Celeste

                  Bubbles
                  Participant

                    I have eaten all the vegetables…even the ones others can't pronounce my entire life.  I've never been overweight.  I've never been a sun worshipper.  I've always exercised…running most days.  All the same I was diagnosed with Stage III melanoma in 2003.  I continued my healthy lifestyle and still progressed to Stage IV in 2010.  After a nivo/Opdivo trial for 2 1/2 years….I am still NED… and still running and eating my veggies (chicken with onions and mushrooms with brussies and carrots tonight!!!).  So…take that info as you will. I do drink wine and take vit D.  Here is the latest data on all things alternative that beats melanoma:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/everything-cures-melanomaredux5.html

                    I wish you well.  Celeste

                    MoiraM
                    Participant

                      I was diagnosed 3C in February 2015 and had four infusions of Ipi in the summer of 2015.

                      I was forced into dietary changes by the changes immunotherapy (Ipi) made to my gut. On the reoccurence of side effects, months after my fourth and last infusion, I had over 40 days of what my doctors called 'mild' diarrhoea and very bad intestinal gas, which was affecting my quality fo life.

                      On my GP's advice, I cut down insolube fibre. I stopped eating most fruit and vegetables, although the following have crept back because of the way I cook – onions, garlic tomatoes, potatoes (no skins) and occasional sweetcorn. In replaced the fruits and vegatable with slow, cold pressed fruit or vegetable juice. Current favourites are celery, carrots. clementine and grape. I add soluble fibre (Benefiber) to the fruit or vegetable juice. This dealt with the worst fo the diarrhoea and helped with the intestinal gas.

                      The gas was still a problem, though, especially as I wanted to be able to eat 'ordinary' food. I used to use 'Windeze' , which contains simeticone, but I can't take that with levothyroxine, which I have to take because Ipi knocked out my anterior pituitary gland. Cutting down the insoluble fibre in my diet helped but did not solve the problem. Then I discovered alpha-galactosidase enzye, marketed as 'Beano'. I take two with every meal that contains fibre. They definitely help control the gas.

                      I also take a daily probiotic, vitamin D, vitamin K to ensure uptake of the vitamin D and folic acid to improve my hair growth, which was knocked back by the medical treatment (not sure which one) or possibly the stress.

                      The vitamin D was introduced because of a blood test.

                      I drink 1.2 litres of vegetable or fruit juice containin a total of about 50 g of soluble fibre per day.

                      My skin did begin to turn orange, so I have have had to cut down the carrots and the clementines. Luckily celery juice is my favourite.

                      For me this was not about alternative or complementry medicine. It is about day-to-day quality of life.

                      MoiraM
                      Participant

                        I was diagnosed 3C in February 2015 and had four infusions of Ipi in the summer of 2015.

                        I was forced into dietary changes by the changes immunotherapy (Ipi) made to my gut. On the reoccurence of side effects, months after my fourth and last infusion, I had over 40 days of what my doctors called 'mild' diarrhoea and very bad intestinal gas, which was affecting my quality fo life.

                        On my GP's advice, I cut down insolube fibre. I stopped eating most fruit and vegetables, although the following have crept back because of the way I cook – onions, garlic tomatoes, potatoes (no skins) and occasional sweetcorn. In replaced the fruits and vegatable with slow, cold pressed fruit or vegetable juice. Current favourites are celery, carrots. clementine and grape. I add soluble fibre (Benefiber) to the fruit or vegetable juice. This dealt with the worst fo the diarrhoea and helped with the intestinal gas.

                        The gas was still a problem, though, especially as I wanted to be able to eat 'ordinary' food. I used to use 'Windeze' , which contains simeticone, but I can't take that with levothyroxine, which I have to take because Ipi knocked out my anterior pituitary gland. Cutting down the insoluble fibre in my diet helped but did not solve the problem. Then I discovered alpha-galactosidase enzye, marketed as 'Beano'. I take two with every meal that contains fibre. They definitely help control the gas.

                        I also take a daily probiotic, vitamin D, vitamin K to ensure uptake of the vitamin D and folic acid to improve my hair growth, which was knocked back by the medical treatment (not sure which one) or possibly the stress.

                        The vitamin D was introduced because of a blood test.

                        I drink 1.2 litres of vegetable or fruit juice containin a total of about 50 g of soluble fibre per day.

                        My skin did begin to turn orange, so I have have had to cut down the carrots and the clementines. Luckily celery juice is my favourite.

                        For me this was not about alternative or complementry medicine. It is about day-to-day quality of life.

                        MoiraM
                        Participant

                          I was diagnosed 3C in February 2015 and had four infusions of Ipi in the summer of 2015.

                          I was forced into dietary changes by the changes immunotherapy (Ipi) made to my gut. On the reoccurence of side effects, months after my fourth and last infusion, I had over 40 days of what my doctors called 'mild' diarrhoea and very bad intestinal gas, which was affecting my quality fo life.

                          On my GP's advice, I cut down insolube fibre. I stopped eating most fruit and vegetables, although the following have crept back because of the way I cook – onions, garlic tomatoes, potatoes (no skins) and occasional sweetcorn. In replaced the fruits and vegatable with slow, cold pressed fruit or vegetable juice. Current favourites are celery, carrots. clementine and grape. I add soluble fibre (Benefiber) to the fruit or vegetable juice. This dealt with the worst fo the diarrhoea and helped with the intestinal gas.

                          The gas was still a problem, though, especially as I wanted to be able to eat 'ordinary' food. I used to use 'Windeze' , which contains simeticone, but I can't take that with levothyroxine, which I have to take because Ipi knocked out my anterior pituitary gland. Cutting down the insoluble fibre in my diet helped but did not solve the problem. Then I discovered alpha-galactosidase enzye, marketed as 'Beano'. I take two with every meal that contains fibre. They definitely help control the gas.

                          I also take a daily probiotic, vitamin D, vitamin K to ensure uptake of the vitamin D and folic acid to improve my hair growth, which was knocked back by the medical treatment (not sure which one) or possibly the stress.

                          The vitamin D was introduced because of a blood test.

                          I drink 1.2 litres of vegetable or fruit juice containin a total of about 50 g of soluble fibre per day.

                          My skin did begin to turn orange, so I have have had to cut down the carrots and the clementines. Luckily celery juice is my favourite.

                          For me this was not about alternative or complementry medicine. It is about day-to-day quality of life.

                          caretothepeople
                          Participant

                            Its a great question since many immunotherapies are still in the experimental phase and others new on the market so there's a lot of unanswered questions and more research needed. Others have chimed in with some personal stories and hopefully more will. It varies between person to person what changes might be appropriate and what someone can handle

                            The best thing to do is probably have a conversation with your doctor about it if you haven't already. With some immunotherapies, there are certain foods and activities they might suggest to avoid to limit infections, so you want to get the best information from your doc so you make an informed decision about what's right for you.

                            caretothepeople
                            Participant

                              Its a great question since many immunotherapies are still in the experimental phase and others new on the market so there's a lot of unanswered questions and more research needed. Others have chimed in with some personal stories and hopefully more will. It varies between person to person what changes might be appropriate and what someone can handle

                              The best thing to do is probably have a conversation with your doctor about it if you haven't already. With some immunotherapies, there are certain foods and activities they might suggest to avoid to limit infections, so you want to get the best information from your doc so you make an informed decision about what's right for you.

                              caretothepeople
                              Participant

                                Its a great question since many immunotherapies are still in the experimental phase and others new on the market so there's a lot of unanswered questions and more research needed. Others have chimed in with some personal stories and hopefully more will. It varies between person to person what changes might be appropriate and what someone can handle

                                The best thing to do is probably have a conversation with your doctor about it if you haven't already. With some immunotherapies, there are certain foods and activities they might suggest to avoid to limit infections, so you want to get the best information from your doc so you make an informed decision about what's right for you.

                                jade1111
                                Participant

                                  Hello!!! 

                                  We talked to a number of alternative providers regarding best approach while my mom is on immunotherapy. As someone mentioned even in alternative worls they are still figuring out ways to support. And there are certain supplements that she was in prior to therapy that we were advised to have her come off sue to their ummune reactions possibly being in conflict. I will check with my brother (he handles this area) but tumeric being one of them that we removed. 

                                  Mom has had a hard time taking supplements due to her stomach being queasy while on the trial. She has gone from a salad type of vegiie diet to carbs and cheeses… settle the stomach…

                                  She is on mushrooms.. if you do some research there are some bif proponents of medicinal mushrooms and cancer.. such a corycepts and reishi.. We also have her on a probiotic.. there is some research suggesting that probiotics are very important and can be quite powerful. Want to look into specific strains.

                                  Wishing you all the best!!!

                                  jade1111
                                  Participant

                                    Hello!!! 

                                    We talked to a number of alternative providers regarding best approach while my mom is on immunotherapy. As someone mentioned even in alternative worls they are still figuring out ways to support. And there are certain supplements that she was in prior to therapy that we were advised to have her come off sue to their ummune reactions possibly being in conflict. I will check with my brother (he handles this area) but tumeric being one of them that we removed. 

                                    Mom has had a hard time taking supplements due to her stomach being queasy while on the trial. She has gone from a salad type of vegiie diet to carbs and cheeses… settle the stomach…

                                    She is on mushrooms.. if you do some research there are some bif proponents of medicinal mushrooms and cancer.. such a corycepts and reishi.. We also have her on a probiotic.. there is some research suggesting that probiotics are very important and can be quite powerful. Want to look into specific strains.

                                    Wishing you all the best!!!

                                    jade1111
                                    Participant

                                      Hello!!! 

                                      We talked to a number of alternative providers regarding best approach while my mom is on immunotherapy. As someone mentioned even in alternative worls they are still figuring out ways to support. And there are certain supplements that she was in prior to therapy that we were advised to have her come off sue to their ummune reactions possibly being in conflict. I will check with my brother (he handles this area) but tumeric being one of them that we removed. 

                                      Mom has had a hard time taking supplements due to her stomach being queasy while on the trial. She has gone from a salad type of vegiie diet to carbs and cheeses… settle the stomach…

                                      She is on mushrooms.. if you do some research there are some bif proponents of medicinal mushrooms and cancer.. such a corycepts and reishi.. We also have her on a probiotic.. there is some research suggesting that probiotics are very important and can be quite powerful. Want to look into specific strains.

                                      Wishing you all the best!!!

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