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Yervoy (ipi) questions

Forums General Melanoma Community Yervoy (ipi) questions

  • Post
    mrf
    Keymaster

      I will be seeing some of the people from BMS (makers of Yervoy/ipi) next week and wonder if you have any questions you would like me to address to them.  If so, just post a reply and I will collate them and see what I can find out.  I can then post all the answers here when I get back.

      I will be seeing some of the people from BMS (makers of Yervoy/ipi) next week and wonder if you have any questions you would like me to address to them.  If so, just post a reply and I will collate them and see what I can find out.  I can then post all the answers here when I get back.

      I have already talked to people who have questions about price, questions about dose levels, and questions about availability, etc.  I can't promise to get every possible answer but should be able to get some key clarifications.  I would need these posted by mid-afternoon Monday.

      We are working on organizing a webinar on ipi and other developing drugs, hopefully for sometime in May.  We will probably co-host it with the Melanoma International Foundation–Catherine and I are in agreement about what we have in mind and we will likely work out the details in the next few days.

      Tim–MRF

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    • Replies
        PeterO
        Participant

          This is good to know. Tim. I posted some questions yesterday ("Paradigm shift"), some of which are relevant to a discussion with people at BMS. The webinar would also be greatly appreciated. A single source of authoritative information (as in a single document) would be invaluable, and would save people from having to paw through many posts on the bulletin board and hours of web surfing.

          By the way, is the MRF event in Seattle going to happen? When will registration open. Thanks.

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            Tim–MRF
            Guest

              Sorry to be slow in responding.  Yes, the Seattle event is happening, but with a few changes.  I will check on when promotion and registration starts.  The date is September 14.  I will be there and hope to see you.

               

              TIm–MRF

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              Tim–MRF
              Guest

                Sorry to be slow in responding.  Yes, the Seattle event is happening, but with a few changes.  I will check on when promotion and registration starts.  The date is September 14.  I will be there and hope to see you.

                 

                TIm–MRF

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              PeterO
              Participant

                This is good to know. Tim. I posted some questions yesterday ("Paradigm shift"), some of which are relevant to a discussion with people at BMS. The webinar would also be greatly appreciated. A single source of authoritative information (as in a single document) would be invaluable, and would save people from having to paw through many posts on the bulletin board and hours of web surfing.

                By the way, is the MRF event in Seattle going to happen? When will registration open. Thanks.

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                dian in spokane
                Participant

                  Tim.

                  Of course, I am not on Ipi, but I am wondering what will happen to the patients currently on it on a trial or compassionate use. Now that it's been approved, will they lose their access to it? Will they only be able to get it if they are paying for it? I'm sure it will take a while to get insurance companies on board, and I am curious about what will happen to those people currently having success with it.

                   

                  thanks,

                   

                  dian

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                    Vermont_Donna
                    Participant

                      Ditto to what Dian said.  I am on Ipi through a clinical trial and while my consent said that if/when Ipi was FDA approved, the trial would continue 30 days afterwards,,,,,but then what??

                      Is 4 infusions at 3mg/kg going to be the "recommended" dose? My oncologist said that I was to call if my melanoma reappeared while in this 12 weeks "watch and wait" and he would restart the Ipi……is that now going to be the recommended option for reoccurence??

                      If I think of more questions, I will post….

                      Thanks Tim,

                      Vermont_Donna

                      stage 3a

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                      Vermont_Donna
                      Participant

                        Ditto to what Dian said.  I am on Ipi through a clinical trial and while my consent said that if/when Ipi was FDA approved, the trial would continue 30 days afterwards,,,,,but then what??

                        Is 4 infusions at 3mg/kg going to be the "recommended" dose? My oncologist said that I was to call if my melanoma reappeared while in this 12 weeks "watch and wait" and he would restart the Ipi……is that now going to be the recommended option for reoccurence??

                        If I think of more questions, I will post….

                        Thanks Tim,

                        Vermont_Donna

                        stage 3a

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                      dian in spokane
                      Participant

                        Tim.

                        Of course, I am not on Ipi, but I am wondering what will happen to the patients currently on it on a trial or compassionate use. Now that it's been approved, will they lose their access to it? Will they only be able to get it if they are paying for it? I'm sure it will take a while to get insurance companies on board, and I am curious about what will happen to those people currently having success with it.

                         

                        thanks,

                         

                        dian

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                        lhaley
                        Participant

                          Tim,

                          I keep reading posts about trials that are with Ippi/Dtic arms for those who are stage 3 NED.  Have they considered a trial for Stage IV that have been on watch and wait?  Many keep saying how stage 3 have nothing offered but here I am at stage IV and in the same boat!  Of course I hope I stay NED (right now it's questionable and they've labeled me as stable).   My onc said that Ipi will be approved for only those with evidence of disease.

                          Thanks,

                          Linda

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                            killmel
                            Participant

                              Hi All,

                              As far as IPI goes, there is potential that a patient can get SEVERE side effects (autoimmune type issue).

                              If some is NED, why would you risk the severe side effects taking IPI (coilits, hypititus, burn out throid, & the list can go on etc) PlusIPI only has a 20% response rate. The FDA is making BMS include a Risk warning with this drug.

                              Just my 2 cents! 

                              Dee

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                              lhaley
                              Participant

                                While I am NED at the moment I have had 5 recurrances and at this moment they are watching 2 nodules in my lungs. I have gone the surgical route to this point. The last time while it was my decision to do that, both my melanoma specialist and surgeon were not totally happy with my decision but I wanted the tumors out since they were operable. The tumor board discussed this at several meetings and finally concurred with my choice. Next scan the lung nodules showed up – they stayed stable at the last scan.  Just like those with stage 3 that want to do something to prevent further spread, I would also like to be able to do this. There is a trial of interfuron vs ipi for stage 3 and one for DTIC vs ipi for stage 3 (at least last I heard). I was told with my last recurrance that I was not eligible for this due to the parameters of the trials.

                                There has been alot of discussion recently of people on the board who are stage 3 who are NED that are doing biochemo. That has to be as toxic yet they are given the chance to get rid of the loose cells. 

                                I would think seriously before I did it but I would like the chance for it to be my decision. In my case my immune system has kicked mels butt for me since 1979.  Went stage IV in 06 and the immune system has kept me at solid tumors, my last recurrance was the first that it went to the lymph nodes, I'm in the 8% that had blood transfer of cells. I would most likely only consider an immunitherapy that would give my own system a little extra boost that it seems to be lacking lately. 

                                Just thought that this was something that Tim could ask since I know that there are many at Stage 3 that are also interested.

                                Linda

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                                lhaley
                                Participant

                                  While I am NED at the moment I have had 5 recurrances and at this moment they are watching 2 nodules in my lungs. I have gone the surgical route to this point. The last time while it was my decision to do that, both my melanoma specialist and surgeon were not totally happy with my decision but I wanted the tumors out since they were operable. The tumor board discussed this at several meetings and finally concurred with my choice. Next scan the lung nodules showed up – they stayed stable at the last scan.  Just like those with stage 3 that want to do something to prevent further spread, I would also like to be able to do this. There is a trial of interfuron vs ipi for stage 3 and one for DTIC vs ipi for stage 3 (at least last I heard). I was told with my last recurrance that I was not eligible for this due to the parameters of the trials.

                                  There has been alot of discussion recently of people on the board who are stage 3 who are NED that are doing biochemo. That has to be as toxic yet they are given the chance to get rid of the loose cells. 

                                  I would think seriously before I did it but I would like the chance for it to be my decision. In my case my immune system has kicked mels butt for me since 1979.  Went stage IV in 06 and the immune system has kept me at solid tumors, my last recurrance was the first that it went to the lymph nodes, I'm in the 8% that had blood transfer of cells. I would most likely only consider an immunitherapy that would give my own system a little extra boost that it seems to be lacking lately. 

                                  Just thought that this was something that Tim could ask since I know that there are many at Stage 3 that are also interested.

                                  Linda

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                                  premedy
                                  Participant

                                    Because a 20% response rate is much better than interferron and the side effects are actually much more tolerable.  The dose on the stage III trial is less than the stage IV dosage and the percentage of people that get severe side effects,like colitis, are pretty low.  Some people don't want to just wait until they are stage iv  or suffer through interferron when theres no overall survival benefit.

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                                    premedy
                                    Participant

                                      Because a 20% response rate is much better than interferron and the side effects are actually much more tolerable.  The dose on the stage III trial is less than the stage IV dosage and the percentage of people that get severe side effects,like colitis, are pretty low.  Some people don't want to just wait until they are stage iv  or suffer through interferron when theres no overall survival benefit.

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                                      killmel
                                      Participant

                                        Hi All,

                                        As far as IPI goes, there is potential that a patient can get SEVERE side effects (autoimmune type issue).

                                        If some is NED, why would you risk the severe side effects taking IPI (coilits, hypititus, burn out throid, & the list can go on etc) PlusIPI only has a 20% response rate. The FDA is making BMS include a Risk warning with this drug.

                                        Just my 2 cents! 

                                        Dee

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                                      lhaley
                                      Participant

                                        Tim,

                                        I keep reading posts about trials that are with Ippi/Dtic arms for those who are stage 3 NED.  Have they considered a trial for Stage IV that have been on watch and wait?  Many keep saying how stage 3 have nothing offered but here I am at stage IV and in the same boat!  Of course I hope I stay NED (right now it's questionable and they've labeled me as stable).   My onc said that Ipi will be approved for only those with evidence of disease.

                                        Thanks,

                                        Linda

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                                        jim Breitfeller
                                        Participant

                                          Tim,

                                          While you have their ears, ask them about combinatorial Therapy. Have they looked into sequential drug addition?

                                          NEW CLINICAL TRIAL DESIGN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

                                          IFN  first, then DTIC, then Yervoy, then Interleukin-2.

                                          IFN= upregulates the MHC compexes

                                          DTIC= sensitizes the tumor cell and causes shedding of the Tumor antigen

                                          Yervoy= shift the immune system from tolarence to activation

                                          IL-2 = used to grow the CTL's Cytotoxic T-Lymphocytes and maintain function and survival.

                                          IMAGINING A CURE!!!!!!!!!!!!!!!!

                                          Are they only pushing their drug or are they really trying to find a cure?

                                          What about the combination of Yervoy and Anti-PD-1?

                                          BEST REGARDS,

                                           

                                          JIMMY B

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                                          jim Breitfeller
                                          Participant

                                            Tim,

                                            While you have their ears, ask them about combinatorial Therapy. Have they looked into sequential drug addition?

                                            NEW CLINICAL TRIAL DESIGN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

                                            IFN  first, then DTIC, then Yervoy, then Interleukin-2.

                                            IFN= upregulates the MHC compexes

                                            DTIC= sensitizes the tumor cell and causes shedding of the Tumor antigen

                                            Yervoy= shift the immune system from tolarence to activation

                                            IL-2 = used to grow the CTL's Cytotoxic T-Lymphocytes and maintain function and survival.

                                            IMAGINING A CURE!!!!!!!!!!!!!!!!

                                            Are they only pushing their drug or are they really trying to find a cure?

                                            What about the combination of Yervoy and Anti-PD-1?

                                            BEST REGARDS,

                                             

                                            JIMMY B

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                                            Sharyn
                                            Participant

                                              Hi Tim,

                                              I'd like to know if there has been any movement in making ipi/Yervoy available in Canada. If so, what is the anticipated time frame? I've been having considerable success after only one round (4 infusions) of ipi, but I have to travel from Nfld to Montreal every 3 weeks. (minimum of $2000 per trip). It would be much easier if my local oncologist could get it here in St. John's, Nfld.

                                              Thanks

                                              Sharyn, Stage IV

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                                              Sharyn
                                              Participant

                                                Hi Tim,

                                                I'd like to know if there has been any movement in making ipi/Yervoy available in Canada. If so, what is the anticipated time frame? I've been having considerable success after only one round (4 infusions) of ipi, but I have to travel from Nfld to Montreal every 3 weeks. (minimum of $2000 per trip). It would be much easier if my local oncologist could get it here in St. John's, Nfld.

                                                Thanks

                                                Sharyn, Stage IV

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                                                s Mom
                                                Participant

                                                  My question is about IPI use with those at Stage 3:  will it be available for those at Stage 3 soon – will the FDA approve it for those not at Stage 4?   Any clinical trials coming up?  What about its use with those who are NED? 

                                                  Thanks, Jeff's MOM

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                                                  s Mom
                                                  Participant

                                                    My question is about IPI use with those at Stage 3:  will it be available for those at Stage 3 soon – will the FDA approve it for those not at Stage 4?   Any clinical trials coming up?  What about its use with those who are NED? 

                                                    Thanks, Jeff's MOM

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                                                    ValinMtl
                                                    Participant

                                                      Hi Tim, I do have a concern.  Now that iplimumab/yervoy has been approved in the United States, I would like to know if BMS plans to continue clinical trials in other countries where there is no access to those treatments.  Would appreciate any knowledge gained as it is an ongoing concern for me.   Val (Canada, currently undergoing round 2 of 4 treatments)

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                                                      ValinMtl
                                                      Participant

                                                        Hi Tim, I do have a concern.  Now that iplimumab/yervoy has been approved in the United States, I would like to know if BMS plans to continue clinical trials in other countries where there is no access to those treatments.  Would appreciate any knowledge gained as it is an ongoing concern for me.   Val (Canada, currently undergoing round 2 of 4 treatments)

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                                                        killmel
                                                        Participant

                                                          Tim,

                                                          Have you heard any new info WHEN http://www.destinationaccess.com/index.aspx will be explaning the financial assistance guideline for Yervoy.

                                                          I am interested in knowing the INCOME  that qualifies for financial assitance for Yervoy. Also, willthe financial assistance program help pay for "drug"  insurance company deductible? How about insurance co-pays for Yervoy

                                                          Thanks

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                                                            MichaelFL
                                                            Participant

                                                              Somehow, I missed your post until it was popped up to the top again. This "new" site begs to be improved.

                                                              it is my understanding that BMS will supply assistance to those who make up to $150,000 in salary, insured or uninsured.

                                                              You can contact them with you specific questions at:

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

                                                              Contact Information
                                                              Bristol-Myers Squibb Destination Access – IXEMPRA Patient Assistance Program
                                                              6900 College Boulevard, Suite 1000
                                                              Overland Park, KS 66211
                                                              1-(800) 861-0048 (phone)
                                                              1-(888) 776-2370 (fax)

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                                                              MichaelFL
                                                              Participant

                                                                Somehow, I missed your post until it was popped up to the top again. This "new" site begs to be improved.

                                                                it is my understanding that BMS will supply assistance to those who make up to $150,000 in salary, insured or uninsured.

                                                                You can contact them with you specific questions at:

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

                                                                Contact Information
                                                                Bristol-Myers Squibb Destination Access – IXEMPRA Patient Assistance Program
                                                                6900 College Boulevard, Suite 1000
                                                                Overland Park, KS 66211
                                                                1-(800) 861-0048 (phone)
                                                                1-(888) 776-2370 (fax)

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                                                              killmel
                                                              Participant

                                                                Tim,

                                                                Have you heard any new info WHEN http://www.destinationaccess.com/index.aspx will be explaning the financial assistance guideline for Yervoy.

                                                                I am interested in knowing the INCOME  that qualifies for financial assitance for Yervoy. Also, willthe financial assistance program help pay for "drug"  insurance company deductible? How about insurance co-pays for Yervoy

                                                                Thanks

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                                                                Jerry from Cape Cod
                                                                Participant

                                                                  Hi Tim,

                                                                  Any news from your visit with the folks from BMS?

                                                                  Jerry from Cape Cod

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                                                                  Jerry from Cape Cod
                                                                  Participant

                                                                    Hi Tim,

                                                                    Any news from your visit with the folks from BMS?

                                                                    Jerry from Cape Cod

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