The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

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

    Loading spinner
Viewing 17 reply threads
  • 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.

      Loading spinner
        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

        Loading spinner
        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

        Loading spinner
      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.

      Loading spinner
      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

      Loading spinner
        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

        Loading spinner
        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

        Loading spinner
      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

      Loading spinner
      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

      Loading spinner
        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

        Loading spinner
        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

        Loading spinner
        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

        Loading spinner
        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.

        Loading spinner
        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.

        Loading spinner
        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

        Loading spinner
      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

      Loading spinner
      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

      Loading spinner
      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

      Loading spinner
      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

      Loading spinner
      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

      Loading spinner
      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

      Loading spinner
      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

      Loading spinner
      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)

      Loading spinner
      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)

      Loading spinner
      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

      Loading spinner
        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)

        Loading spinner
        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)

        Loading spinner
      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

      Loading spinner
      Jerry from Cape Cod
      Participant

      Hi Tim,

      Any news from your visit with the folks from BMS?

      Jerry from Cape Cod

      Loading spinner
      Jerry from Cape Cod
      Participant

      Hi Tim,

      Any news from your visit with the folks from BMS?

      Jerry from Cape Cod

      Loading spinner
Viewing 17 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.