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scary thoughts!!

Forums General Melanoma Community scary thoughts!!

  • Post
    killmel
    Participant

      Hi all,

       

      I do not want to put negative thoughts about IPI but I have been reading posts daily. Many people taking IPI seems to have new lesions after taking IPI. Yes maybe these lesions would have shown up anyways with IPI.And yes may these are being caused by "reactions/inflammation" to IPI. I know that this can not be proven "scientifically" but I anyone have any thoughts about IPI and "cause & effect"ofmgetting new lesions after taking IPI. 

      Hi all,

       

      I do not want to put negative thoughts about IPI but I have been reading posts daily. Many people taking IPI seems to have new lesions after taking IPI. Yes maybe these lesions would have shown up anyways with IPI.And yes may these are being caused by "reactions/inflammation" to IPI. I know that this can not be proven "scientifically" but I anyone have any thoughts about IPI and "cause & effect"ofmgetting new lesions after taking IPI. 

    Viewing 13 reply threads
    • Replies
        Janner
        Participant

          I wish I could post a graphic, but the deal is IPI doesn't help everyone.  It does help more people to begin with, then some of those people do have recurrences later.  BUT….. overall, there is an improvement on the survival curve relative to the current norms.  That's better than anyone can say about any other treatment for melanoma to date.  It's not a cure by iteself.  It may not work at all for some.  It can extend survival for others, and may be close to a cure for others. 

          Janner
          Participant

            I wish I could post a graphic, but the deal is IPI doesn't help everyone.  It does help more people to begin with, then some of those people do have recurrences later.  BUT….. overall, there is an improvement on the survival curve relative to the current norms.  That's better than anyone can say about any other treatment for melanoma to date.  It's not a cure by iteself.  It may not work at all for some.  It can extend survival for others, and may be close to a cure for others. 

            Jerry from Cape Cod
            Participant

              Ipi is not a magic bullet.  Ipi will not work for all patients.  The researchers are still working on the facts surrounding the best possible patient.  In every presentation I've attended with many different Melanoma leaders they will tell all that the next step in the current crop of treatment options in trials is to be able to predict which treatment will work for the individual patient.

              There is also speculation that Ipi and other treatments given earlier will provided the best result and this will be explored in depth after the drug is approved by the FDA

              Also realize that Ipi has never been promoted as the cure.  It's simply a giant leap forward.  Even the most cautious researcher will tell you that Ipi is another step in finding consistant treatment. 

              Jerry from Cape Cod.

              Stage IV IPI week 97

                Jerry from Cape Cod
                Participant

                  Followup.

                  Also the majoriy of the newer postings about Ipi and reoccurances have been in the compassionate use program.  Also, even in some of the main line trials the life expectancy at entry could be as low as 16 weeks (ME) and yet the results are as my doctors say REMARKABLE.

                  Jerry from Cape Cod

                  Jerry from Cape Cod
                  Participant

                    Followup.

                    Also the majoriy of the newer postings about Ipi and reoccurances have been in the compassionate use program.  Also, even in some of the main line trials the life expectancy at entry could be as low as 16 weeks (ME) and yet the results are as my doctors say REMARKABLE.

                    Jerry from Cape Cod

                  Jerry from Cape Cod
                  Participant

                    Ipi is not a magic bullet.  Ipi will not work for all patients.  The researchers are still working on the facts surrounding the best possible patient.  In every presentation I've attended with many different Melanoma leaders they will tell all that the next step in the current crop of treatment options in trials is to be able to predict which treatment will work for the individual patient.

                    There is also speculation that Ipi and other treatments given earlier will provided the best result and this will be explored in depth after the drug is approved by the FDA

                    Also realize that Ipi has never been promoted as the cure.  It's simply a giant leap forward.  Even the most cautious researcher will tell you that Ipi is another step in finding consistant treatment. 

                    Jerry from Cape Cod.

                    Stage IV IPI week 97

                    jim Breitfeller
                    Participant

                       

                      EliminationEquilibriumEscape

                      Red cells= Melanoma cancer cells

                      It is not IPI that is doing the work, it is restarting your immune system.  Ipi activates the CD8+ and CD4+ Tcells. Once activated the T-cells have to multiply and divide. It take time for our bodies to create an army of (CTLs) Cytotoxic T Lymphocytes. In the Mean time, the cancer is also growing, sometime hypermelabolic (Fast). It is growing faster than the equilbrium and the elimination phase. So the cancer escapes.

                      It takes 33 days to grow the CD4 T-cells and that includes the surpressive Treg cells

                      it takes 49 day to grow the CD8+ T-cells

                      Shrinkage of the the tumors take anywhere from 80 to 112 days, if all the activation of the immune system goes as plan.  You need to grow the army of T-cells until the balance shifts back to elimination Phase

                      That is why you can see grow of new tumors after starting Ipi Therapy.

                      I hope this helps

                      http://melanomamissionary.blogspot.com/

                      Melanoma Missionary

                      Jimmy B

                       

                      jim Breitfeller
                      Participant

                         

                        EliminationEquilibriumEscape

                        Red cells= Melanoma cancer cells

                        It is not IPI that is doing the work, it is restarting your immune system.  Ipi activates the CD8+ and CD4+ Tcells. Once activated the T-cells have to multiply and divide. It take time for our bodies to create an army of (CTLs) Cytotoxic T Lymphocytes. In the Mean time, the cancer is also growing, sometime hypermelabolic (Fast). It is growing faster than the equilbrium and the elimination phase. So the cancer escapes.

                        It takes 33 days to grow the CD4 T-cells and that includes the surpressive Treg cells

                        it takes 49 day to grow the CD8+ T-cells

                        Shrinkage of the the tumors take anywhere from 80 to 112 days, if all the activation of the immune system goes as plan.  You need to grow the army of T-cells until the balance shifts back to elimination Phase

                        That is why you can see grow of new tumors after starting Ipi Therapy.

                        I hope this helps

                        http://melanomamissionary.blogspot.com/

                        Melanoma Missionary

                        Jimmy B

                         

                        ValinMtl
                        Participant

                          Just to say that although I am having a few problems right now, I am so happy that I am on the compassionate iplimumab trial.  In August, just prior to starting the trial, my melanoma was running rampant and I was very scared..my leg turning purple made me realize that I was in deep deep trouble. Once I started ipi, I could see the changes occurring, the spread was slowing down (at least the cutaneous portion) and a lot of spots were simply drying up, the mottling has changed for the better significantly. 

                          Of course, I'm disappointed that there is a new problem in the left groin, but I'm holding to the belief that it is just a hiccup in my treatment, that my doctors will o.k. for me to continue the trial..if not I will do IL-2 BUT I will never have regretted doing the iplimumab trial, I'm hoping it saves my life but listen even if it prolongs my life for a while, I'm just delighted.  Things are happening in the world of treatment of melanoma and the longer we stay alive the more hope we have.  Val

                          ValinMtl
                          Participant

                            Just to say that although I am having a few problems right now, I am so happy that I am on the compassionate iplimumab trial.  In August, just prior to starting the trial, my melanoma was running rampant and I was very scared..my leg turning purple made me realize that I was in deep deep trouble. Once I started ipi, I could see the changes occurring, the spread was slowing down (at least the cutaneous portion) and a lot of spots were simply drying up, the mottling has changed for the better significantly. 

                            Of course, I'm disappointed that there is a new problem in the left groin, but I'm holding to the belief that it is just a hiccup in my treatment, that my doctors will o.k. for me to continue the trial..if not I will do IL-2 BUT I will never have regretted doing the iplimumab trial, I'm hoping it saves my life but listen even if it prolongs my life for a while, I'm just delighted.  Things are happening in the world of treatment of melanoma and the longer we stay alive the more hope we have.  Val

                            Jim in Denver
                            Participant

                              Your comments reflect a large degree of ignorance, which also tends to breed fear.  As the others have well said, Ipi is not a magic bullet.  It does not work for everyone and can give a range of responses over vaying time frames.  I would suggest you do a lot more reading the available literature. 

                              Jim in Denver
                              Participant

                                Your comments reflect a large degree of ignorance, which also tends to breed fear.  As the others have well said, Ipi is not a magic bullet.  It does not work for everyone and can give a range of responses over vaying time frames.  I would suggest you do a lot more reading the available literature. 

                                  killmel
                                  Participant

                                    Jim

                                     I am a newbie and overwhelmed with all the info out there.

                                    I am newly diagnosed. I am not as educated as you with your Masters degree but I am trying to learn. Perhaps you could be less critical. I thought MPIP was a safe place to come and I would not be judged.

                                    I am very shy so I post anonymous. I am afraid my questions & concerns will be consider stupid or even ignorant. My concerns were not unfounded because you made a commment to that very fact. You have also made comments about posts made under "anonymous". If posting under "anonymous"  offends you & other, I apologize.

                                    I am just trying to get through life with this disease like everyone else. I am just not as experienced dealing with  everything coming my way. If posting "anonymous"is acceptable to others, please tell me, or I will not post again on MPIP. If you feel like Jim that I should not post anonymous, I want to know that too. 

                                    I hope others reading this post will be more accepting of me and not judge me. Thank you for taking time to readmy post.

                                    killmel
                                    Participant

                                      Jim

                                       I am a newbie and overwhelmed with all the info out there.

                                      I am newly diagnosed. I am not as educated as you with your Masters degree but I am trying to learn. Perhaps you could be less critical. I thought MPIP was a safe place to come and I would not be judged.

                                      I am very shy so I post anonymous. I am afraid my questions & concerns will be consider stupid or even ignorant. My concerns were not unfounded because you made a commment to that very fact. You have also made comments about posts made under "anonymous". If posting under "anonymous"  offends you & other, I apologize.

                                      I am just trying to get through life with this disease like everyone else. I am just not as experienced dealing with  everything coming my way. If posting "anonymous"is acceptable to others, please tell me, or I will not post again on MPIP. If you feel like Jim that I should not post anonymous, I want to know that too. 

                                      I hope others reading this post will be more accepting of me and not judge me. Thank you for taking time to readmy post.

                                      Jim in Denver
                                      Participant

                                        Please acept my sincere apologies.  There are no stupid questions, just jerkey smart asses like yours truly.   I have good days and bad days, and yesterday was one of the latter.  There is a lot to learn about  how treatments work, and most of us (even me) reall do want to help others who (unfortunately) have to learn all about melanoma and treatments.  Please ask any question you want, and don't be concerned abou what anyone else says or thinks.

                                        Best Wishes,

                                        Jim

                                        Jim in Denver
                                        Participant

                                          Please acept my sincere apologies.  There are no stupid questions, just jerkey smart asses like yours truly.   I have good days and bad days, and yesterday was one of the latter.  There is a lot to learn about  how treatments work, and most of us (even me) reall do want to help others who (unfortunately) have to learn all about melanoma and treatments.  Please ask any question you want, and don't be concerned abou what anyone else says or thinks.

                                          Best Wishes,

                                          Jim

                                          killmel
                                          Participant

                                            Jim,Thank you for the apology. Is it OK with you,  if I post "anonymous" . I am painfully shy and not very confident.

                                            I hope others will not be offended if I continue to post "anonymous".

                                            killmel
                                            Participant

                                              Jim,Thank you for the apology. Is it OK with you,  if I post "anonymous" . I am painfully shy and not very confident.

                                              I hope others will not be offended if I continue to post "anonymous".

                                              W.
                                              Participant

                                                I think it's completely okay to post anonymously, except maybe when asking about  other patients' wellbeing. In that case, asking anonymously can be a bit creepy.

                                                W.
                                                Participant

                                                  I think it's completely okay to post anonymously, except maybe when asking about  other patients' wellbeing. In that case, asking anonymously can be a bit creepy.

                                                  jim Breitfeller
                                                  Participant

                                                    Anonymous,

                                                    There are no stupid questions here. We are all on a learning curve, including me. If you ever want to talk off-line my email is [email protected]

                                                    We are all here for the same reason, we have all been touch with this Monster and want eradicate it for good.

                                                    Best Regards

                                                    jimmy B

                                                    Melanoma Missionary

                                                    http://melanomamissionary.blogspot.com/

                                                     

                                                     

                                                    jim Breitfeller
                                                    Participant

                                                      Anonymous,

                                                      There are no stupid questions here. We are all on a learning curve, including me. If you ever want to talk off-line my email is [email protected]

                                                      We are all here for the same reason, we have all been touch with this Monster and want eradicate it for good.

                                                      Best Regards

                                                      jimmy B

                                                      Melanoma Missionary

                                                      http://melanomamissionary.blogspot.com/

                                                       

                                                       

                                                      Jim in Denver
                                                      Participant

                                                        Yes, of course it is ok.  I am over that rant, and surprised you remember that one.  I need to apologize for going off on that subject too!.

                                                        Jim in Denver
                                                        Participant

                                                          Yes, of course it is ok.  I am over that rant, and surprised you remember that one.  I need to apologize for going off on that subject too!.

                                                        Jim in Denver
                                                        Participant

                                                          I gotta agree with Jim on this.  The idea that the treament actually causes the disease is ridiculous!  I  know there are people out there who think that flu shots cause the flu, but to talk that way on this board about melanoma shows no understanding of the disease or respect for patients.

                                                          Jim in Denver
                                                          Participant

                                                            I gotta agree with Jim on this.  The idea that the treament actually causes the disease is ridiculous!  I  know there are people out there who think that flu shots cause the flu, but to talk that way on this board about melanoma shows no understanding of the disease or respect for patients.

                                                            nicoli
                                                            Participant

                                                              Hey Anonymous, you post with whichever name you want to.

                                                              And as for researching this monster, I too agree that it doesn't seem right that we have to become cancer experts. That is what the experts are for. We have to have some trust in our oncologists and if we can't…………fire them! I just fired my onc after hearing of another one who is much more aggessive and positive.

                                                              Who of us really gave cancer much thought before our own diagnosis? And getting a diagnosis and beginning treatment is so shocking and time-consuming that how many of us can really research our own treatment plan? Cancer doesn't just touch the most intelligent, educated and resourceful. It touches all of us.

                                                              And even if we find another treatment plan at another cancer center, how many of us can afford to travel to another location for treatment?  Not me.

                                                              So Anonymous, you just hang in there, do your best and you pray for me and I will pray for you. Promise.

                                                              Nicki, stage 3b, diagnosed 12/2009, remission 7 months, local recurrance 10/2010, ONE YEAR SURVIVOR!

                                                               

                                                               

                                                              nicoli
                                                              Participant

                                                                Hey Anonymous, you post with whichever name you want to.

                                                                And as for researching this monster, I too agree that it doesn't seem right that we have to become cancer experts. That is what the experts are for. We have to have some trust in our oncologists and if we can't…………fire them! I just fired my onc after hearing of another one who is much more aggessive and positive.

                                                                Who of us really gave cancer much thought before our own diagnosis? And getting a diagnosis and beginning treatment is so shocking and time-consuming that how many of us can really research our own treatment plan? Cancer doesn't just touch the most intelligent, educated and resourceful. It touches all of us.

                                                                And even if we find another treatment plan at another cancer center, how many of us can afford to travel to another location for treatment?  Not me.

                                                                So Anonymous, you just hang in there, do your best and you pray for me and I will pray for you. Promise.

                                                                Nicki, stage 3b, diagnosed 12/2009, remission 7 months, local recurrance 10/2010, ONE YEAR SURVIVOR!

                                                                 

                                                                 

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