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Ipi/Yervoy available without a medical trial?
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Ipi/Yervoy available without a medical trial?

› Forums › General Melanoma Community › Ipi/Yervoy available without a medical trial?

  • Post
    • May 22, 2011 at 5:36 am
    Rendergirl
    Participant

      I found the Bristol Myers site that says Yervoy is now available as a prescription. How come my oncologist didn't tell me that? I don't hear anyone else talking about it either. The only way to get it seems to be to enroll in a trial where you only have 50-50 chance of getting the drug. Has anyone gotten it with a prescription?

      Also, I looked up the side effects and they seem pretty serious. Anyone had Yervoy and can tell me what you side effects were like?

       

      Becca

      I found the Bristol Myers site that says Yervoy is now available as a prescription. How come my oncologist didn't tell me that? I don't hear anyone else talking about it either. The only way to get it seems to be to enroll in a trial where you only have 50-50 chance of getting the drug. Has anyone gotten it with a prescription?

      Also, I looked up the side effects and they seem pretty serious. Anyone had Yervoy and can tell me what you side effects were like?

       

      Becca

    Viewing 11 reply threads
    • Replies
        • May 22, 2011 at 12:01 pm
        FormerCaregiver
        Participant

          Yervoy's approval by the FDA is very recent and there is a good chance that not everyone
          is aware of this. Sometimes medical news travels slowly as doctors are still comfortable
          in relying on printed material such as medical journals for their information.

          However, there may be better reason. It is very likely that your oncologist feels that
          you do not need Yervoy yet as you have just been given a stage III diagnosis.

          Here is a link to a discussion about Yervoy:
          http://www.melanoma.org/community/mpip-melanoma-patients-information-page/rollcall-have-you-taken-yervoyipi-your-results

          One post in the thread mentions the possibility of obtaining it via prescription because
          of FDA approaval. I don't know much more than that as our health system here is very
          different from yours.

          Hope this helps.

          Frank from Australia

          • May 22, 2011 at 12:01 pm
          FormerCaregiver
          Participant

            Yervoy's approval by the FDA is very recent and there is a good chance that not everyone
            is aware of this. Sometimes medical news travels slowly as doctors are still comfortable
            in relying on printed material such as medical journals for their information.

            However, there may be better reason. It is very likely that your oncologist feels that
            you do not need Yervoy yet as you have just been given a stage III diagnosis.

            Here is a link to a discussion about Yervoy:
            http://www.melanoma.org/community/mpip-melanoma-patients-information-page/rollcall-have-you-taken-yervoyipi-your-results

            One post in the thread mentions the possibility of obtaining it via prescription because
            of FDA approaval. I don't know much more than that as our health system here is very
            different from yours.

            Hope this helps.

            Frank from Australia

            • May 22, 2011 at 12:24 pm
            Rocco
            Participant

              The FDA approval of Yervoy (ipilimumab) occurred in later March 2011.  If you've seen a Melanoma specialist since then I'm surprised that he/she hadn't at least mentioned it as it was in the press and on the news..  Perhaps he/she feels it wouldn't be the proper course of treatment for you?  Not sure what stage you are – that makes a difference in treatment options.

              There are several of us on the board have been in Ipilimumab trials.  I had a very good response along with 'Donna from Vermont' and others.   As with any Mel treatment, however, it doesn't work for all and there are some here that it didn't work for.  

                • May 22, 2011 at 6:04 pm
                Vermont_Donna
                Participant

                  Hi Becca,

                  I am a "complete responder" to Yervoy (Ipilimumab), after receiving four doses December 2010 to February 2011….an infusion every three weeks….3mk/kg. I have posted extensively on side effects (minimal) in other threads here on MPIP, look for threads regarding Ipilimumab or yervoy. My posts are long and comprehensive so I really dont want to repost here when its already on this site, regarding my experience with the drug. Let me know though if you have trouble finding further information here of y other posts.

                  Please talk to your melanoma oncologist about whether you meet the criteria to be prescribed this drug, and yes research about clinical trials too. You have been given good advice to your post here.

                  Vermont_Donna, stage 3a, NED

                  • May 22, 2011 at 7:00 pm
                  dian in spokane
                  Participant

                    Becca,

                    You can access Donna's previous posts by clicking on her highlighted name in her reply and going to 'previous bulletin board posts' (or something like that) It will ask you to repeat your login password before allowing you access, but then you can see all of her posts since this bulletin board changed over. Before that you have to search the archived posts. Although, I'm thinking she might have a lot of info in her profile too

                    • May 22, 2011 at 7:00 pm
                    dian in spokane
                    Participant

                      Becca,

                      You can access Donna's previous posts by clicking on her highlighted name in her reply and going to 'previous bulletin board posts' (or something like that) It will ask you to repeat your login password before allowing you access, but then you can see all of her posts since this bulletin board changed over. Before that you have to search the archived posts. Although, I'm thinking she might have a lot of info in her profile too

                      • May 22, 2011 at 6:04 pm
                      Vermont_Donna
                      Participant

                        Hi Becca,

                        I am a "complete responder" to Yervoy (Ipilimumab), after receiving four doses December 2010 to February 2011….an infusion every three weeks….3mk/kg. I have posted extensively on side effects (minimal) in other threads here on MPIP, look for threads regarding Ipilimumab or yervoy. My posts are long and comprehensive so I really dont want to repost here when its already on this site, regarding my experience with the drug. Let me know though if you have trouble finding further information here of y other posts.

                        Please talk to your melanoma oncologist about whether you meet the criteria to be prescribed this drug, and yes research about clinical trials too. You have been given good advice to your post here.

                        Vermont_Donna, stage 3a, NED

                      • May 22, 2011 at 12:24 pm
                      Rocco
                      Participant

                        The FDA approval of Yervoy (ipilimumab) occurred in later March 2011.  If you've seen a Melanoma specialist since then I'm surprised that he/she hadn't at least mentioned it as it was in the press and on the news..  Perhaps he/she feels it wouldn't be the proper course of treatment for you?  Not sure what stage you are – that makes a difference in treatment options.

                        There are several of us on the board have been in Ipilimumab trials.  I had a very good response along with 'Donna from Vermont' and others.   As with any Mel treatment, however, it doesn't work for all and there are some here that it didn't work for.  

                        • May 22, 2011 at 2:51 pm
                        lhaley
                        Participant

                          Becca,

                          From what I can tell from your profile you are currently NED (unless it's not updated). I believe at this point YERVOY is only prescribed – off trial for those with active disease.  The trials that are current are for those that are stage 3 without active disease.

                          Linda

                          Stage IV

                          • May 22, 2011 at 2:51 pm
                          lhaley
                          Participant

                            Becca,

                            From what I can tell from your profile you are currently NED (unless it's not updated). I believe at this point YERVOY is only prescribed – off trial for those with active disease.  The trials that are current are for those that are stage 3 without active disease.

                            Linda

                            Stage IV

                            • May 22, 2011 at 3:09 pm
                            dian in spokane
                            Participant

                              Hi Becca,

                              as someone else mentioned, Yervoy is approved only for unresectable disease. If your patnet is up to date then you are NED correct? For some reason TODAY I am unable to access your previous posts, so I am not sure exactly where you stand in your treatment. Are you on interferon? are you currently on observation only? or in some kind of trial?

                              The goal of Ipi, like all melanoma treatments, is to help acheive the status you are at now:Nno Evidence of Disease. The best thing to do once you are there (NED) is ..enjoy it.

                              • May 22, 2011 at 3:09 pm
                              dian in spokane
                              Participant

                                Hi Becca,

                                as someone else mentioned, Yervoy is approved only for unresectable disease. If your patnet is up to date then you are NED correct? For some reason TODAY I am unable to access your previous posts, so I am not sure exactly where you stand in your treatment. Are you on interferon? are you currently on observation only? or in some kind of trial?

                                The goal of Ipi, like all melanoma treatments, is to help acheive the status you are at now:Nno Evidence of Disease. The best thing to do once you are there (NED) is ..enjoy it.

                                  • May 22, 2011 at 5:35 pm
                                  boot2aboot
                                  Participant

                                    very few trials for adjuvant therapy…and almost none done without placebo…there are a few…the pittsburgh study using yervoy with an interferon control arm is a good study….i am considering this if my ins is not approved for bio-chemotherapy…

                                    i was told yervoy is not given for adjuvent therapy at this time by three different oncs…my hope is i would find one who would off-label….but then ins issues again…so anyway, there is a trial, but you would not be sure to get yervoy…but you would be given one of two proven drugs at piitsburgh

                                    call up american cancer society and have them hunt down clinical trials considering yervoy as adjuvant therapy…

                                    boots

                                    • May 22, 2011 at 5:35 pm
                                    boot2aboot
                                    Participant

                                      very few trials for adjuvant therapy…and almost none done without placebo…there are a few…the pittsburgh study using yervoy with an interferon control arm is a good study….i am considering this if my ins is not approved for bio-chemotherapy…

                                      i was told yervoy is not given for adjuvent therapy at this time by three different oncs…my hope is i would find one who would off-label….but then ins issues again…so anyway, there is a trial, but you would not be sure to get yervoy…but you would be given one of two proven drugs at piitsburgh

                                      call up american cancer society and have them hunt down clinical trials considering yervoy as adjuvant therapy…

                                      boots

                                    • May 23, 2011 at 1:39 am
                                    Rendergirl
                                    Participant

                                      I am stage 3 and recovering from my latest surgery having all my lymph nodes removed. I guess currently I am NED, or so they hope. Yes I'm not sick enough to go on most therapies, but there is a clinical trial of Yervoy at Moffit Cancer Center in Tampa that will accept me. It's a 50-50 thing. So does that mean that you all think I shouldn't do it, because I'm only a stage 3?

                                        • May 23, 2011 at 2:33 am
                                        nicoli
                                        Participant

                                          Just my humble opinion Rendergirl,

                                          I am also stage 3. Although I do have one spot to be biopsied June 1st, I am NED as far as we know at this moment. 

                                          I tried Interferon (lasted 2 days) and did biochemo (was able to survive 2 sessions instead of 4). I did these because a doctor recommended them but I didn't really study them beforehand. As far as the doctors can see, I did not respond to either medicine.

                                          All I know is this… systemic chemicals are very hard on our bodies. 

                                          I now choose to do without any more harsh chemicals in my body until (God Forbid) I reach stage 4 or until local recurrences demand that I do systemic treatment.

                                          If the response rate were higher, I might not be against systemic treatment for my stage 3, but the response rates are just so low and I don't want my "experiments" to harm my body's own cancer fighting abilities.

                                          At the risk of sounding like a hypocrite, I did agree to radiation treatments in the hope of it killing remaining local cancer cells and preventing future recurrences. But this is local and not systemic.

                                          I know this cancer stuff if so scary and we want to hit it with everything we can find. But some stage 3s are in remission a long time after surgery. You might be too.

                                          Hard questions and no easy answer.

                                          Nicki, Stage 3b, scalp

                                           

                                          • May 23, 2011 at 4:48 am
                                          FormerCaregiver
                                          Participant

                                            I agree with a great deal of what you have said, Nicki.

                                            As you have stated "systemic chemicals are very hard on our bodies". If only more doctors
                                            and patients realised this important fact!

                                            My late wife and I made the decision to forego interferon because there wasn't convincing
                                            evidence that would warrant its use. When she reached stage IV, we reluctantly agreed to
                                            try chemo (fotemustine), but its side effects were significant. These included fairly
                                            constant nausea, fatigue and "chemo brain".

                                            There are certainly difficult decisions to be made by anyone with progressive disease.

                                            Frank from Australia

                                            • May 23, 2011 at 4:48 am
                                            FormerCaregiver
                                            Participant

                                              I agree with a great deal of what you have said, Nicki.

                                              As you have stated "systemic chemicals are very hard on our bodies". If only more doctors
                                              and patients realised this important fact!

                                              My late wife and I made the decision to forego interferon because there wasn't convincing
                                              evidence that would warrant its use. When she reached stage IV, we reluctantly agreed to
                                              try chemo (fotemustine), but its side effects were significant. These included fairly
                                              constant nausea, fatigue and "chemo brain".

                                              There are certainly difficult decisions to be made by anyone with progressive disease.

                                              Frank from Australia

                                              • May 23, 2011 at 2:33 am
                                              nicoli
                                              Participant

                                                Just my humble opinion Rendergirl,

                                                I am also stage 3. Although I do have one spot to be biopsied June 1st, I am NED as far as we know at this moment. 

                                                I tried Interferon (lasted 2 days) and did biochemo (was able to survive 2 sessions instead of 4). I did these because a doctor recommended them but I didn't really study them beforehand. As far as the doctors can see, I did not respond to either medicine.

                                                All I know is this… systemic chemicals are very hard on our bodies. 

                                                I now choose to do without any more harsh chemicals in my body until (God Forbid) I reach stage 4 or until local recurrences demand that I do systemic treatment.

                                                If the response rate were higher, I might not be against systemic treatment for my stage 3, but the response rates are just so low and I don't want my "experiments" to harm my body's own cancer fighting abilities.

                                                At the risk of sounding like a hypocrite, I did agree to radiation treatments in the hope of it killing remaining local cancer cells and preventing future recurrences. But this is local and not systemic.

                                                I know this cancer stuff if so scary and we want to hit it with everything we can find. But some stage 3s are in remission a long time after surgery. You might be too.

                                                Hard questions and no easy answer.

                                                Nicki, Stage 3b, scalp

                                                 

                                                • May 23, 2011 at 3:33 am
                                                lhaley
                                                Participant

                                                  You have to make an educated decision and then not look back. We can't tell you what to do, each persons case is different.  I think the main question I was ask the Dr is, if this comes back and I've done this trial, what is it going to prevent me from doing in the future. 

                                                  I went to stage IV in 06. At that time I did a trial with GMCSF. Because of recurrances they did disclose to me that I got the drug. Some trials will not disclose.  I've now had 6 recurrances and have treated all of them with surgery. This has been a good decision for me. Seeing the surgeon tomorrow to schedule surgery for the 6th recurrance.  Would this have been the right decision for many? No way.  As I said, each of us have different histories and different health issues.  You have to decide what's right for you.

                                                  Let us know what you decide!

                                                  Linda

                                                  • May 23, 2011 at 3:33 am
                                                  lhaley
                                                  Participant

                                                    You have to make an educated decision and then not look back. We can't tell you what to do, each persons case is different.  I think the main question I was ask the Dr is, if this comes back and I've done this trial, what is it going to prevent me from doing in the future. 

                                                    I went to stage IV in 06. At that time I did a trial with GMCSF. Because of recurrances they did disclose to me that I got the drug. Some trials will not disclose.  I've now had 6 recurrances and have treated all of them with surgery. This has been a good decision for me. Seeing the surgeon tomorrow to schedule surgery for the 6th recurrance.  Would this have been the right decision for many? No way.  As I said, each of us have different histories and different health issues.  You have to decide what's right for you.

                                                    Let us know what you decide!

                                                    Linda

                                                    • May 23, 2011 at 2:14 pm
                                                    Vermont_Donna
                                                    Participant

                                                      Dear Becca,

                                                      Another thought about doing any systemic treatment right now….if you are NED you dont have any known measurable disease at this time, so how would you know if the systemic treatment was working? You would not have a way to measure that ie scans would not show anything getting smaller or being eliminated, quite possibly they would only show progression of the disease if that occured. So that is a point to consider even if you get into the Moffit trial that has the 50 50 chance of getting Ipi.

                                                      What is your oncologist recommending? Do you feel compelled to "do" something?? I know it is hard at stage 3 when there arent many good viable options.

                                                      We are happy to comment on options but the decision making is yours, we cant "tell"you what to do…..

                                                      Vermont_Donna, stage 3a, NED

                                                      • May 23, 2011 at 2:14 pm
                                                      Vermont_Donna
                                                      Participant

                                                        Dear Becca,

                                                        Another thought about doing any systemic treatment right now….if you are NED you dont have any known measurable disease at this time, so how would you know if the systemic treatment was working? You would not have a way to measure that ie scans would not show anything getting smaller or being eliminated, quite possibly they would only show progression of the disease if that occured. So that is a point to consider even if you get into the Moffit trial that has the 50 50 chance of getting Ipi.

                                                        What is your oncologist recommending? Do you feel compelled to "do" something?? I know it is hard at stage 3 when there arent many good viable options.

                                                        We are happy to comment on options but the decision making is yours, we cant "tell"you what to do…..

                                                        Vermont_Donna, stage 3a, NED

                                                      • May 23, 2011 at 1:39 am
                                                      Rendergirl
                                                      Participant

                                                        I am stage 3 and recovering from my latest surgery having all my lymph nodes removed. I guess currently I am NED, or so they hope. Yes I'm not sick enough to go on most therapies, but there is a clinical trial of Yervoy at Moffit Cancer Center in Tampa that will accept me. It's a 50-50 thing. So does that mean that you all think I shouldn't do it, because I'm only a stage 3?

                                                        • May 23, 2011 at 6:43 pm
                                                        Rendergirl
                                                        Participant

                                                          I can't thank you all enough for your feedback and inspiration. I have decided not to do the Yervoy trial, and I am at peace with it. It has more side effects than I had realized, and there's something to be said for not putting more chemicals in my body if it doesn't need it. I just wanted to feel like I was doing something, but right now I think the best thing I can do is go to all my onc, dermatologist, and pt appts and just take good care of myself. My mom said "If it aint broke, don't fix it", and for all we know right now I am cancer free and hopefully will stay that way.

                                                          I am at peace with my decision and that's the best I can ask for. Thank you all for giving me info so that I could make this difficult decision.

                                                          Becca

                                                          • May 23, 2011 at 6:43 pm
                                                          Rendergirl
                                                          Participant

                                                            I can't thank you all enough for your feedback and inspiration. I have decided not to do the Yervoy trial, and I am at peace with it. It has more side effects than I had realized, and there's something to be said for not putting more chemicals in my body if it doesn't need it. I just wanted to feel like I was doing something, but right now I think the best thing I can do is go to all my onc, dermatologist, and pt appts and just take good care of myself. My mom said "If it aint broke, don't fix it", and for all we know right now I am cancer free and hopefully will stay that way.

                                                            I am at peace with my decision and that's the best I can ask for. Thank you all for giving me info so that I could make this difficult decision.

                                                            Becca

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