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ippi concerns
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ippi concerns

› Forums › General Melanoma Community › ippi concerns

  • Post
    • March 13, 2012 at 8:46 pm
    bikerwife
    Participant
      My name is Belva I am the wife of Lynn he is battling melenoma. I am new to this forum. Looking for support in dealing with dreaded disease. I feel alone and helpless. We have had WBRT by a doctor who never had any dealings with melanoma. Have had gamma knife to five lesions on brain. That was a breeze.

      We have transferred to musc in charleston south carolina. Our new doctor and his staff are wonder. He is a melenoma specialist and very up to date. Had 3 ippi treatments after. Second noticed new tumor growth. Dr said this happens at times and didn’t seem concerned. Iasked about blood work said it was good.

      This is scary to watch. Thanks for listening and may God be with each of you. God heals and I’m holding on to this.

    Viewing 5 reply threads
    • Replies
        • March 14, 2012 at 12:00 am
        gabsound
        Participant

          Belva, I just wanted to let you know that my first scan following my IPI treatment did show lots of activity in the liver, lungs and bones however, my oncologist who is a melanoma specialist said that this could be "pseudo progression" which he says he has seen on many occasions and says this does not necessarily predict the ultimate effect of the treatment. I also found an article which says the same. http://theoncologist.alphamedpress.org/content/12/7/864.full Lets stay positive because this treatment may still work. Julie in Las Vegas

            • March 14, 2012 at 12:16 pm
            Laurie from maine
            Participant
              Hi
              I go for my third ippi tomorrow. I also got three new growths under skin on my hips after second infusion but I remain optimistic. I can breath easier so makes me think it is working on my lung

              Julie I saw that you had radiation while on ippi did I read that right? There recently was a news show on about doing radiation while on ippi and for some people it created amazing results. You will see a lot of people were writing about It on this site and the melanoma internatiomal site I am going to ask about it tomorrow as i have tumor on my shoulder i am womdering if i should Do radiation on tomsee if it will boost immune reaponse Not sure if doctor will do it

              I remain positive for all of us that we will see results!!
              Laurie from Maine

              • March 14, 2012 at 2:35 pm
              bikerwife
              Participant
                Laura
                Ialso have been reading about radiation while on ippi. Lynn had gamma knife one week after second ippi treatment it was a breeze no problems.
                I’m glad to know he’s not the only one growing new growths. Not that I wish this on you, but I feel like we arnt in the boat alone. May God bless u praying for the new family I’ve met online.
                • March 14, 2012 at 2:35 pm
                bikerwife
                Participant
                  Laura
                  Ialso have been reading about radiation while on ippi. Lynn had gamma knife one week after second ippi treatment it was a breeze no problems.
                  I’m glad to know he’s not the only one growing new growths. Not that I wish this on you, but I feel like we arnt in the boat alone. May God bless u praying for the new family I’ve met online.
                  • March 14, 2012 at 2:35 pm
                  bikerwife
                  Participant
                    Laura
                    Ialso have been reading about radiation while on ippi. Lynn had gamma knife one week after second ippi treatment it was a breeze no problems.
                    I’m glad to know he’s not the only one growing new growths. Not that I wish this on you, but I feel like we arnt in the boat alone. May God bless u praying for the new family I’ve met online.
                    • March 14, 2012 at 10:56 pm
                    gabsound
                    Participant
                      Hi Laurie,

                      Yes, I did do radiation in the middle of my IPI treatments. I also heard about better response w both IPI and radiation. My oncologist had mentioned that as well as Jimmy B and I also think someone doing research in ? Portland maybe.

                      I would definitely ask your dr about it. Radiation is often done for pain from bone mets as well. Although it sounds like you have a soft tissue tumor.

                      Keep us informed.

                      Julie in las Vegas

                      • March 14, 2012 at 10:56 pm
                      gabsound
                      Participant
                        Hi Laurie,

                        Yes, I did do radiation in the middle of my IPI treatments. I also heard about better response w both IPI and radiation. My oncologist had mentioned that as well as Jimmy B and I also think someone doing research in ? Portland maybe.

                        I would definitely ask your dr about it. Radiation is often done for pain from bone mets as well. Although it sounds like you have a soft tissue tumor.

                        Keep us informed.

                        Julie in las Vegas

                        • March 14, 2012 at 10:56 pm
                        gabsound
                        Participant
                          Hi Laurie,

                          Yes, I did do radiation in the middle of my IPI treatments. I also heard about better response w both IPI and radiation. My oncologist had mentioned that as well as Jimmy B and I also think someone doing research in ? Portland maybe.

                          I would definitely ask your dr about it. Radiation is often done for pain from bone mets as well. Although it sounds like you have a soft tissue tumor.

                          Keep us informed.

                          Julie in las Vegas

                          • March 14, 2012 at 12:16 pm
                          Laurie from maine
                          Participant
                            Hi
                            I go for my third ippi tomorrow. I also got three new growths under skin on my hips after second infusion but I remain optimistic. I can breath easier so makes me think it is working on my lung

                            Julie I saw that you had radiation while on ippi did I read that right? There recently was a news show on about doing radiation while on ippi and for some people it created amazing results. You will see a lot of people were writing about It on this site and the melanoma internatiomal site I am going to ask about it tomorrow as i have tumor on my shoulder i am womdering if i should Do radiation on tomsee if it will boost immune reaponse Not sure if doctor will do it

                            I remain positive for all of us that we will see results!!
                            Laurie from Maine

                            • March 14, 2012 at 12:16 pm
                            Laurie from maine
                            Participant
                              Hi
                              I go for my third ippi tomorrow. I also got three new growths under skin on my hips after second infusion but I remain optimistic. I can breath easier so makes me think it is working on my lung

                              Julie I saw that you had radiation while on ippi did I read that right? There recently was a news show on about doing radiation while on ippi and for some people it created amazing results. You will see a lot of people were writing about It on this site and the melanoma internatiomal site I am going to ask about it tomorrow as i have tumor on my shoulder i am womdering if i should Do radiation on tomsee if it will boost immune reaponse Not sure if doctor will do it

                              I remain positive for all of us that we will see results!!
                              Laurie from Maine

                            • March 14, 2012 at 12:00 am
                            gabsound
                            Participant

                              Belva, I just wanted to let you know that my first scan following my IPI treatment did show lots of activity in the liver, lungs and bones however, my oncologist who is a melanoma specialist said that this could be "pseudo progression" which he says he has seen on many occasions and says this does not necessarily predict the ultimate effect of the treatment. I also found an article which says the same. http://theoncologist.alphamedpress.org/content/12/7/864.full Lets stay positive because this treatment may still work. Julie in Las Vegas

                              • March 14, 2012 at 12:00 am
                              gabsound
                              Participant

                                Belva, I just wanted to let you know that my first scan following my IPI treatment did show lots of activity in the liver, lungs and bones however, my oncologist who is a melanoma specialist said that this could be "pseudo progression" which he says he has seen on many occasions and says this does not necessarily predict the ultimate effect of the treatment. I also found an article which says the same. http://theoncologist.alphamedpress.org/content/12/7/864.full Lets stay positive because this treatment may still work. Julie in Las Vegas

                                • March 15, 2012 at 2:44 pm
                                Kimberly Duncan Watts
                                Participant
                                  Belva, I too have a great oncologist w little experience in melanoma however my treatments are monitored by a specialist 3 hours away that I see regularly… Live in an area w little sun, it was tanning bed addiction for me. This is a wonderful group of people who have shared a wealth of info and guidance. Welcome, ask away and God bless!
                                  • March 15, 2012 at 2:44 pm
                                  Kimberly Duncan Watts
                                  Participant
                                    Belva, I too have a great oncologist w little experience in melanoma however my treatments are monitored by a specialist 3 hours away that I see regularly… Live in an area w little sun, it was tanning bed addiction for me. This is a wonderful group of people who have shared a wealth of info and guidance. Welcome, ask away and God bless!
                                    • March 15, 2012 at 2:44 pm
                                    Kimberly Duncan Watts
                                    Participant
                                      Belva, I too have a great oncologist w little experience in melanoma however my treatments are monitored by a specialist 3 hours away that I see regularly… Live in an area w little sun, it was tanning bed addiction for me. This is a wonderful group of people who have shared a wealth of info and guidance. Welcome, ask away and God bless!
                                  Viewing 5 reply threads
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