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Ipi Questions

› Forums › General Melanoma Community › Ipi Questions

  • Post
    • June 29, 2011 at 5:36 am
    Lauradunc
    Participant

      Hi All~

      Hi All~

         I am new to this board.  I myself do not have melanoma, however my mom does.  She is currently Stage 4 with a mets to her lung and adrenal gland.  She was diagnosed in 2008 with stage 3b.  Went a whole year with no evident disease and in September of 2009 melanoma popped up in her lymph nodes in her left armpit.  It felt like she had surgery after surgery and we were always keeping up on getting them out.  One year later, August 2010 we found out it had gone to the lung or the bronchial tube.  She looks amazing and is clinically doing excellent!  We took a trip to LA to meet with Dr. O'day…what an amazing man!  He told us what his thoughts were. So, we headed back to Northern CA where we went to Dr. Wang at CPMC.  He also is an amazing dr, very knowledgeable! There we were able to get on IPI when it was compassionate.  She completed 4 rounds, and had a PEt scan.  The results were mixed.  most tumors responded with a few new ones popping up.  Dr Wang said that is very normal.  He said she needed another round.  So, we go this week for our fourth session.  She is still handling it pretty well.  she has been more tired this round and has actually had fevers. She has one nodule on her right side that feels like it has grown but doesn't feel as hard as before. Other than that no real symptoms. 

         So, my question for all of you who are on IPI or Yervoy, or have completed it, what were your symptoms? How did you tolerate it? Also, I am wondering what people recommend to do other than traditional medicine.  Like alternative treatments, vitamins, herbal stuff?  Any help would be appreciated. 

          We are trying to keep our spirits up and keep trusting in the Lord! 

           Thanks for you help,

                   Laura (Mom is Stage 4)

    Viewing 7 reply threads
    • Replies
        • June 29, 2011 at 12:28 pm
        FormerCaregiver
        Participant

          Welcome to our forum. Thanks for filling in the details for your mother on the profile
          page.

          There are a number of people here who are on Yervoy (ipi), and here are some comments
          about it:
          http://www.melanoma.org/community/mpip-melanoma-patients-information-page/rollcall-have-you-taken-yervoyipi-your-results

          Unfortunately, I feel that alternative treatments for later stage melanoma don't have much
          evidence in their favour although some people claim to have found them beneficial.
          Vitamins and herbal treatments tend to be ineffective when there are solid tumours to deal
          with. However, there is the possibility that they can certainly improve general health
          especially if one has no evidence of disease (NED) at the moment. Other people may wish to
          give you their opinions about all this.

          Hope this helps.

          Frank from Australia

            • June 29, 2011 at 4:02 pm
            Lauradunc
            Participant

              Thank you Frank, that was very helpful.  There were some with around he same symptoms as my mom, which helps.  Thanks again!

              • June 29, 2011 at 4:02 pm
              Lauradunc
              Participant

                Thank you Frank, that was very helpful.  There were some with around he same symptoms as my mom, which helps.  Thanks again!

              • June 29, 2011 at 12:28 pm
              FormerCaregiver
              Participant

                Welcome to our forum. Thanks for filling in the details for your mother on the profile
                page.

                There are a number of people here who are on Yervoy (ipi), and here are some comments
                about it:
                http://www.melanoma.org/community/mpip-melanoma-patients-information-page/rollcall-have-you-taken-yervoyipi-your-results

                Unfortunately, I feel that alternative treatments for later stage melanoma don't have much
                evidence in their favour although some people claim to have found them beneficial.
                Vitamins and herbal treatments tend to be ineffective when there are solid tumours to deal
                with. However, there is the possibility that they can certainly improve general health
                especially if one has no evidence of disease (NED) at the moment. Other people may wish to
                give you their opinions about all this.

                Hope this helps.

                Frank from Australia

                • June 29, 2011 at 1:28 pm
                Carol Taylor
                Participant

                  Hi Laura,

                  Your post hit home because I've been 3b since 2008, left arm pit nodes all gone and have to stay on top because I know it can be lurking. When it's in lymph nodes under an arm, lungs is one of the top two places for recurrence. I haven't done any treatments other than surgeries, but I wanted to address your last question.

                  I actually posted about aloe vera & natural products not too long ago because I asked my pharmacist daughter about aloe and we had such a great conversation and I learned so much that I thought the info was worth sharing.

                  http://www.melanoma.org/community/mpip-melanoma-patients-information-page/aloe-vera-all-naturals-fda-info

                  Whether you read that or not, your Mom's onc needs to be brought into that discussion and know about anything your Mom adds to her system or is thinking about adding to her system.

                  Lord, in Your mercy, guide Laura and her Mom as they navigate these waters. Grant them wisdom and open doors. Thank You. Amen and Amen.

                  Grace and peace,

                  Carol

                  • June 29, 2011 at 1:28 pm
                  Carol Taylor
                  Participant

                    Hi Laura,

                    Your post hit home because I've been 3b since 2008, left arm pit nodes all gone and have to stay on top because I know it can be lurking. When it's in lymph nodes under an arm, lungs is one of the top two places for recurrence. I haven't done any treatments other than surgeries, but I wanted to address your last question.

                    I actually posted about aloe vera & natural products not too long ago because I asked my pharmacist daughter about aloe and we had such a great conversation and I learned so much that I thought the info was worth sharing.

                    http://www.melanoma.org/community/mpip-melanoma-patients-information-page/aloe-vera-all-naturals-fda-info

                    Whether you read that or not, your Mom's onc needs to be brought into that discussion and know about anything your Mom adds to her system or is thinking about adding to her system.

                    Lord, in Your mercy, guide Laura and her Mom as they navigate these waters. Grant them wisdom and open doors. Thank You. Amen and Amen.

                    Grace and peace,

                    Carol

                    • June 29, 2011 at 10:09 pm
                    jimjoeb
                    Participant

                      Hi!

                      I'm stage IIIa and will meet with an oncologist for the first time tomorrow. I will be proceeding with an integrated approach, i.e. both the best that modern medicine can offer and naturopathic medicine, including homeopathy).

                      I had an appointment with my naturopath today. I was most interested to learn from her that there are homeopathic versions of interfuron and interleukin.

                      If you choose the alternate route, I encourage you to seek professional advice and not self-prescribe.

                      • June 29, 2011 at 10:09 pm
                      jimjoeb
                      Participant

                        Hi!

                        I'm stage IIIa and will meet with an oncologist for the first time tomorrow. I will be proceeding with an integrated approach, i.e. both the best that modern medicine can offer and naturopathic medicine, including homeopathy).

                        I had an appointment with my naturopath today. I was most interested to learn from her that there are homeopathic versions of interfuron and interleukin.

                        If you choose the alternate route, I encourage you to seek professional advice and not self-prescribe.

                        • July 13, 2011 at 10:14 pm
                        soniagodwin
                        Guest

                          [email protected]
                          Hi Dear
                          How are you today, I hope all is well. My name is  miss sonia, I am very good looking perfect body figure Girl kind,sincere and trusted, God fearing.And,I saw your advert was delighted to contact you, I hope you will be the true loving, honest and caring Man that I have been looking for, And I have something special to tell you about me, So please contact me directly through my private email address at : ([email protected]) so that I can also send my picture directly to you. Remember that love has,no colour barrier, religious,nationality or distance barrier, but love matters most,my happiness,my joy all is in your hands,please don't let me down ok. I will never stop loving you, regards i kiss you, I will be waiting for your response
                          ([email protected])

                          • July 13, 2011 at 10:14 pm
                          soniagodwin
                          Guest

                            [email protected]
                            Hi Dear
                            How are you today, I hope all is well. My name is  miss sonia, I am very good looking perfect body figure Girl kind,sincere and trusted, God fearing.And,I saw your advert was delighted to contact you, I hope you will be the true loving, honest and caring Man that I have been looking for, And I have something special to tell you about me, So please contact me directly through my private email address at : ([email protected]) so that I can also send my picture directly to you. Remember that love has,no colour barrier, religious,nationality or distance barrier, but love matters most,my happiness,my joy all is in your hands,please don't let me down ok. I will never stop loving you, regards i kiss you, I will be waiting for your response
                            ([email protected])

                        Viewing 7 reply threads
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