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Mistletoe infusion – any feedback??
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Mistletoe infusion – any feedback??

› Forums › General Melanoma Community › Mistletoe infusion – any feedback??

  • Post
    • August 29, 2016 at 2:36 am
    jennifer_s
    Participant

      My 48 yr old twin sister has been fighting melanoma intensely for the last year.  She still has several tumors in various locations, which after her last bout in April with recovering from Steven Johnson Syndrome due to a new immunotherapy, have begun to grow again.  We are still waiting to see what is going on with her liver (spots) and possible mets to the brain (again).  She is otherwise incredibly healthy!

      She has asked me to do some research about mistletoe infusion therapy, so if anyone has even heard about this, has any experience with this, good or bad, I'd welcome your feedback.

      On a personal note, I'd also be curious to see if anyone else has been in our situation: identical twins, one with cancer, one without.  It's incredibly difficult to see my sister going through this, and if it was any other disease, we could just switch out parts and she'd be fine.

      Thank you for reading this, it helps to see how supportive everyone is, and how many people have not quit and even beat this.

    Viewing 8 reply threads
    • Replies
        • August 29, 2016 at 2:42 am
        BrianP
        Participant

          Jennifer,

          I'm by no means endorsing mistletoe therapy simply because I don't know anything about it but you might want to check out believebig.org.  They seem to be big on it and are putting their money behind research and clinical trials.  It seems like a pretty solid organization  I believe they have phone numbers you can contact for more information and guidance.

          Brian

          • August 29, 2016 at 2:42 am
          BrianP
          Participant

            Jennifer,

            I'm by no means endorsing mistletoe therapy simply because I don't know anything about it but you might want to check out believebig.org.  They seem to be big on it and are putting their money behind research and clinical trials.  It seems like a pretty solid organization  I believe they have phone numbers you can contact for more information and guidance.

            Brian

              • August 30, 2016 at 2:39 am
              jennifer_s
              Participant

                Thank you Brian, I will be following that up!

                • August 30, 2016 at 2:39 am
                jennifer_s
                Participant

                  Thank you Brian, I will be following that up!

                  • August 30, 2016 at 2:39 am
                  jennifer_s
                  Participant

                    Thank you Brian, I will be following that up!

                  • August 29, 2016 at 2:42 am
                  BrianP
                  Participant

                    Jennifer,

                    I'm by no means endorsing mistletoe therapy simply because I don't know anything about it but you might want to check out believebig.org.  They seem to be big on it and are putting their money behind research and clinical trials.  It seems like a pretty solid organization  I believe they have phone numbers you can contact for more information and guidance.

                    Brian

                    • August 29, 2016 at 12:48 pm
                    Janner
                    Participant
                        • August 30, 2016 at 2:48 am
                        jennifer_s
                        Participant

                          Interestingly enough, my sister was already living an relatively healthy lifestyle, and when this "issue" arose got a metabolic profile and really made sure she was where she needed to be.  That, and her positive attitude, have brought her thus far already, to be in prime condition to fight this.

                          Thank you for linking that, it is encouraging to know that others choose to battle this in a more holistic manner!

                          • August 30, 2016 at 2:48 am
                          jennifer_s
                          Participant

                            Interestingly enough, my sister was already living an relatively healthy lifestyle, and when this "issue" arose got a metabolic profile and really made sure she was where she needed to be.  That, and her positive attitude, have brought her thus far already, to be in prime condition to fight this.

                            Thank you for linking that, it is encouraging to know that others choose to battle this in a more holistic manner!

                            • August 30, 2016 at 2:48 am
                            jennifer_s
                            Participant

                              Interestingly enough, my sister was already living an relatively healthy lifestyle, and when this "issue" arose got a metabolic profile and really made sure she was where she needed to be.  That, and her positive attitude, have brought her thus far already, to be in prime condition to fight this.

                              Thank you for linking that, it is encouraging to know that others choose to battle this in a more holistic manner!

                            • August 29, 2016 at 12:48 pm
                            Janner
                            Participant
                              • August 29, 2016 at 12:48 pm
                              Janner
                              Participant
                                • August 29, 2016 at 1:05 pm
                                Gene_S
                                Participant

                                  My daughter did not have melanoma and after failing chemotherapy went to a naturopathic doctor who got her mistletoe injections not infusions.  You self inject according to the amount of mistletoe it takes to make you have a reaction to it.  It is used widely in Europe but we purchased it locally.

                                  Sadly the chemo had distroyed to much and we didn't find it in time to help her.  But most people in Europe as we were told do this along with their other treatments for cancer. 

                                  I hope this was a little helpful.

                                  Judy (loving wife of Gene Stage IV and now NED for over 4 years)

                                    • August 29, 2016 at 7:02 pm
                                    Ninniditti
                                    Participant

                                      Hi Jennifer! I and my sister are identical twins. I have melanoma my twin has not. I believe she is the one who suffers most. It's funny but when I suffer from sideeffects my twin seems to have the same symtom. 

                                      • August 30, 2016 at 3:38 am
                                      jennifer_s
                                      Participant

                                        Hi Inger!  It was incredible to hear of other twins in the same situation.  Not funny about the side effects, either, just a twin thing that happens to us as well, once in a while.

                                        I will be honest with you, I wonder at the injustice of this; why her and not me?  The helplessness is the worst part, if there is anything I could do to make her better I'd do it in a minute – which I'm SURE that is something everybody else's loved ones would say as well, but being a twin, you'd think there would be a better chance of reality in that.

                                        It appears that at the moment, immunotherapy is her best hope; but we're at the dreaded time of waiting to speak with this specialist and that for "interpretation" of some potential new growths.  It takes F O R E V E R it seems.

                                        So if you don't mind my asking, what is your history in this melanoma journey?  How has your sister helped you the most?

                                        Thank you for taking the time to respond!

                                        ~Jennifer

                                        • August 30, 2016 at 3:38 am
                                        jennifer_s
                                        Participant

                                          Hi Inger!  It was incredible to hear of other twins in the same situation.  Not funny about the side effects, either, just a twin thing that happens to us as well, once in a while.

                                          I will be honest with you, I wonder at the injustice of this; why her and not me?  The helplessness is the worst part, if there is anything I could do to make her better I'd do it in a minute – which I'm SURE that is something everybody else's loved ones would say as well, but being a twin, you'd think there would be a better chance of reality in that.

                                          It appears that at the moment, immunotherapy is her best hope; but we're at the dreaded time of waiting to speak with this specialist and that for "interpretation" of some potential new growths.  It takes F O R E V E R it seems.

                                          So if you don't mind my asking, what is your history in this melanoma journey?  How has your sister helped you the most?

                                          Thank you for taking the time to respond!

                                          ~Jennifer

                                          • August 30, 2016 at 3:38 am
                                          jennifer_s
                                          Participant

                                            Hi Inger!  It was incredible to hear of other twins in the same situation.  Not funny about the side effects, either, just a twin thing that happens to us as well, once in a while.

                                            I will be honest with you, I wonder at the injustice of this; why her and not me?  The helplessness is the worst part, if there is anything I could do to make her better I'd do it in a minute – which I'm SURE that is something everybody else's loved ones would say as well, but being a twin, you'd think there would be a better chance of reality in that.

                                            It appears that at the moment, immunotherapy is her best hope; but we're at the dreaded time of waiting to speak with this specialist and that for "interpretation" of some potential new growths.  It takes F O R E V E R it seems.

                                            So if you don't mind my asking, what is your history in this melanoma journey?  How has your sister helped you the most?

                                            Thank you for taking the time to respond!

                                            ~Jennifer

                                            • August 29, 2016 at 7:02 pm
                                            Ninniditti
                                            Participant

                                              Hi Jennifer! I and my sister are identical twins. I have melanoma my twin has not. I believe she is the one who suffers most. It's funny but when I suffer from sideeffects my twin seems to have the same symtom. 

                                              • August 29, 2016 at 7:02 pm
                                              Ninniditti
                                              Participant

                                                Hi Jennifer! I and my sister are identical twins. I have melanoma my twin has not. I believe she is the one who suffers most. It's funny but when I suffer from sideeffects my twin seems to have the same symtom. 

                                                • August 30, 2016 at 2:58 am
                                                jennifer_s
                                                Participant

                                                  I am sorry to hear about your daughter.  If I understand, the mistletoe is best used in conjunction with your other treatment?  It's encouraging to know it is used in Europe, and I can investigate further. 

                                                  Thank you for responding!

                                                  • August 30, 2016 at 2:58 am
                                                  jennifer_s
                                                  Participant

                                                    I am sorry to hear about your daughter.  If I understand, the mistletoe is best used in conjunction with your other treatment?  It's encouraging to know it is used in Europe, and I can investigate further. 

                                                    Thank you for responding!

                                                    • August 30, 2016 at 2:58 am
                                                    jennifer_s
                                                    Participant

                                                      I am sorry to hear about your daughter.  If I understand, the mistletoe is best used in conjunction with your other treatment?  It's encouraging to know it is used in Europe, and I can investigate further. 

                                                      Thank you for responding!

                                                    • August 29, 2016 at 1:05 pm
                                                    Gene_S
                                                    Participant

                                                      My daughter did not have melanoma and after failing chemotherapy went to a naturopathic doctor who got her mistletoe injections not infusions.  You self inject according to the amount of mistletoe it takes to make you have a reaction to it.  It is used widely in Europe but we purchased it locally.

                                                      Sadly the chemo had distroyed to much and we didn't find it in time to help her.  But most people in Europe as we were told do this along with their other treatments for cancer. 

                                                      I hope this was a little helpful.

                                                      Judy (loving wife of Gene Stage IV and now NED for over 4 years)

                                                      • August 29, 2016 at 1:05 pm
                                                      Gene_S
                                                      Participant

                                                        My daughter did not have melanoma and after failing chemotherapy went to a naturopathic doctor who got her mistletoe injections not infusions.  You self inject according to the amount of mistletoe it takes to make you have a reaction to it.  It is used widely in Europe but we purchased it locally.

                                                        Sadly the chemo had distroyed to much and we didn't find it in time to help her.  But most people in Europe as we were told do this along with their other treatments for cancer. 

                                                        I hope this was a little helpful.

                                                        Judy (loving wife of Gene Stage IV and now NED for over 4 years)

                                                    Viewing 8 reply threads
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