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IPI AND TEMODAL
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IPI AND TEMODAL

› Forums › General Melanoma Community › IPI AND TEMODAL

  • Post
    • August 9, 2011 at 6:58 pm
    ShellyB
    Participant

      hi,

      hi,

      could do with some help here, was orginally diagnosed with melanoma in 2003 on my left calf and had interferon back then, i was ned for just five years, since then i had recurrences twice on the back left knee, on the left thigh and last year just above my pelvis,all had been surically removed. Just recently i found a spot on my left arm and on the back of my left rib, I was then sent for a PET scan to see if they had melanoma, which they did but there are other spots which some i now can feel, one on my left thigh, also on the back  of my right rib, just below the right of my chest and a spot just above my liver, there is also spots in my right hip.didn't realise one person could get it in so many places, and i feel i'm not getting the help i need, i'm living in Ireland. Til today i was waiting to hear about the Braf trial and if i could get on it, but apparently the trial is now closed, so the only option i'm left with is a drug called Temodal. I'm aware of the Ipilimumab drug but this is not licenced here in ireland and the only way i can get it is to try Temodal for two months and if this fails i can then have the Ipi drug,,just do not understand the system. I was always led to believe that chemo drugs like temodal are not effective on melanoma, so i hope i'm wrong but why have i do go through with this. what is this ipi drug and what kind of results does it have..any info would be grateful

       

       

      desperate

      michelle

    Viewing 9 reply threads
    • Replies
        • August 9, 2011 at 8:10 pm
        Teodora
        Guest

          Hi,

          Yervoy/Ipi/was approved by the FDA  in the US for advanced metastatic melanoma in March 2011.

          You can find all the relevant information for this drug on the official website:

          http://www.yervoy.com/patient.aspx 

          Best regards,

          • August 9, 2011 at 8:10 pm
          Teodora
          Guest

            Hi,

            Yervoy/Ipi/was approved by the FDA  in the US for advanced metastatic melanoma in March 2011.

            You can find all the relevant information for this drug on the official website:

            http://www.yervoy.com/patient.aspx 

            Best regards,

            • August 10, 2011 at 7:08 am
            Fen
            Participant

              Michelle, 

              If you don't feel as if your medical team is moving fast enough or giving you enough options then you should move.  Do you think it is your med center or Ireland in general? Is IL-2 available there?  Can you be treated in a different country?

              I'm no expert, but it seems as if you are being offered limited options. Please keep us posted.

              Fen

              • August 10, 2011 at 7:08 am
              Fen
              Participant

                Michelle, 

                If you don't feel as if your medical team is moving fast enough or giving you enough options then you should move.  Do you think it is your med center or Ireland in general? Is IL-2 available there?  Can you be treated in a different country?

                I'm no expert, but it seems as if you are being offered limited options. Please keep us posted.

                Fen

                  • August 10, 2011 at 11:03 am
                  ShellyB
                  Participant

                    Fen,

                     

                    thanks for the reply. i got a second opinion from another onocologist in another hospital and they agreed to this treatment also, think generally it is the country itself as doctors can only work with what is available to them. To be honest i haven't heard of IL 2. Have been looking on the internet but it is very hard to get information on treatments for me to understand, and at the minute its trying to get my head around it all and my options are limited here, as been treated in another country may not be an option. i did see that there was a trial for both the drugs i'm been offered given together in other countries but i have to have temodal first and then ipi. Maybe it might be no harm in looking into ipi in another country,rather than waiting two months but if this option was possible i'd be wondering is ipi the best drug out there,  is there any other drugs worth looking into.

                     

                    thanks michelle

                    • August 10, 2011 at 11:03 am
                    ShellyB
                    Participant

                      Fen,

                       

                      thanks for the reply. i got a second opinion from another onocologist in another hospital and they agreed to this treatment also, think generally it is the country itself as doctors can only work with what is available to them. To be honest i haven't heard of IL 2. Have been looking on the internet but it is very hard to get information on treatments for me to understand, and at the minute its trying to get my head around it all and my options are limited here, as been treated in another country may not be an option. i did see that there was a trial for both the drugs i'm been offered given together in other countries but i have to have temodal first and then ipi. Maybe it might be no harm in looking into ipi in another country,rather than waiting two months but if this option was possible i'd be wondering is ipi the best drug out there,  is there any other drugs worth looking into.

                       

                      thanks michelle

                      • August 10, 2011 at 12:07 pm
                      Fen
                      Participant

                        Frank (below) is absolutely right about finding a melanoma specialist.  Melanoma is not a typical cancer so even a great general oncologist might not be knowledgeable.  

                        You can search the board for posts on IL-2 and other treatments by using the "Search" tab.  Another way to get information is to start a new post with the treatment as the title.  There are individuals on the forum who have done treatments and are willing to share.  You might search for them and email directly. HimynameisKevin is currently doing  the TIL treatment that Frank mentions and JanefromMaine has done IL-2.

                        One more thing, Michelle, do you have someone who can help you search? Adjusting to this health status AND learning about treatments is tough – delegate.

                        good luck

                        Fen

                        • August 10, 2011 at 12:07 pm
                        Fen
                        Participant

                          Frank (below) is absolutely right about finding a melanoma specialist.  Melanoma is not a typical cancer so even a great general oncologist might not be knowledgeable.  

                          You can search the board for posts on IL-2 and other treatments by using the "Search" tab.  Another way to get information is to start a new post with the treatment as the title.  There are individuals on the forum who have done treatments and are willing to share.  You might search for them and email directly. HimynameisKevin is currently doing  the TIL treatment that Frank mentions and JanefromMaine has done IL-2.

                          One more thing, Michelle, do you have someone who can help you search? Adjusting to this health status AND learning about treatments is tough – delegate.

                          good luck

                          Fen

                        • August 10, 2011 at 11:22 am
                        FormerCaregiver
                        Participant

                          Welcome to our forum, Michelle. Unfortunately, melanoma can be very unpredictable in how
                          and when it spreads. Are you seeing an oncologist who is experienced in treating
                          melanoma patients?

                          Chemo doesn't normally work for very long in most cases. However, some people can have
                          good short-term results with it. Apparently, the rules in some places say that ipi (now
                          called Yervoy) should be only given after another treatment such as chemo has been
                          tried. Yervoy is probably the most effective drug that we have at the moment.

                          Other treatments that are worth considering include IL-2 and Braf (and other) inhibitors.

                          However, I feel that TIL treatment (adoptive cell therapy) is the most promising therapy
                          that is available. For more info see:
                          http://www.melanoma.org/community/mpip-melanoma-patients-information-page/til-treatment-adoptive-cell-therapy-clinical-trial

                          Hope this helps.

                          Frank from Australia

                          • August 10, 2011 at 11:22 am
                          FormerCaregiver
                          Participant

                            Welcome to our forum, Michelle. Unfortunately, melanoma can be very unpredictable in how
                            and when it spreads. Are you seeing an oncologist who is experienced in treating
                            melanoma patients?

                            Chemo doesn't normally work for very long in most cases. However, some people can have
                            good short-term results with it. Apparently, the rules in some places say that ipi (now
                            called Yervoy) should be only given after another treatment such as chemo has been
                            tried. Yervoy is probably the most effective drug that we have at the moment.

                            Other treatments that are worth considering include IL-2 and Braf (and other) inhibitors.

                            However, I feel that TIL treatment (adoptive cell therapy) is the most promising therapy
                            that is available. For more info see:
                            http://www.melanoma.org/community/mpip-melanoma-patients-information-page/til-treatment-adoptive-cell-therapy-clinical-trial

                            Hope this helps.

                            Frank from Australia

                            • August 11, 2011 at 2:39 am
                            paul Lyons
                            Participant

                              Hello Michelle.

                              My understanding is that about 10% of people respond to Temodar. I've been taking it for about 7 mos, some shrinkage of tumors on the last scan. Just to say that it can show real results and need not be thought of as somethng that is bound to fail and is being taken simply because the bureacracy requires it. 

                              Best of luck to you,

                              Paul

                              • August 11, 2011 at 2:39 am
                              paul Lyons
                              Participant

                                Hello Michelle.

                                My understanding is that about 10% of people respond to Temodar. I've been taking it for about 7 mos, some shrinkage of tumors on the last scan. Just to say that it can show real results and need not be thought of as somethng that is bound to fail and is being taken simply because the bureacracy requires it. 

                                Best of luck to you,

                                Paul

                                • August 11, 2011 at 3:13 pm
                                ShellyB
                                Participant

                                  thanks all for your replies, i do realise that every drug and every person is different, think my problem is the lack of knowledge i have on drugs for melanoma, as to this point it has all been surgery. I have to trust the doctors for what there recommending, having no clue if there is anything else out there. I'm starting the Temodal next friday, had a look on that website about the ipi, it don't half frighten you with all the warnings and side effects, never seen that with any other drug, they really emphasis the warnings, must do serious damage if your body don't take to this.

                                  I will start another post for IPI, as i have no problem in taking the temodal, i have serious concerns about IPI. Hopefully i'll get plenty of feedback

                                   

                                  thanks all for your help

                                  michelle

                                  • August 11, 2011 at 3:13 pm
                                  ShellyB
                                  Participant

                                    thanks all for your replies, i do realise that every drug and every person is different, think my problem is the lack of knowledge i have on drugs for melanoma, as to this point it has all been surgery. I have to trust the doctors for what there recommending, having no clue if there is anything else out there. I'm starting the Temodal next friday, had a look on that website about the ipi, it don't half frighten you with all the warnings and side effects, never seen that with any other drug, they really emphasis the warnings, must do serious damage if your body don't take to this.

                                    I will start another post for IPI, as i have no problem in taking the temodal, i have serious concerns about IPI. Hopefully i'll get plenty of feedback

                                     

                                    thanks all for your help

                                    michelle

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