Melanoma on lungs and liver

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  • Post
    • September 20, 2011 at 8:53 pm
    plaza
    Participant

      Has anyone had success using ipilimumab Yervoy, or what did you use that was successful?

      Has anyone had success using ipilimumab Yervoy, or what did you use that was successful?

      My mom was on a clinical trial and was working well until this past month. She had to be off of the the drugs for three weeks for a surgery. Her scans came back that the tumor on her liver had grown but it is still smaller than it's original size. The ones on her lungs had disappeared and now they are back. Since they grew back she was kicked off the clinical trial by the drug manufacturer, which doesn't make much sense since she was having success on the medication. Now they are telling her about this recently approved drug by the FDA and was just wondering if anyone has had success. Thanks for reading and responses would be appreciated.

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    • Replies
        • September 20, 2011 at 10:09 pm
        Vermont_Donna
        Participant

          Hi,

          I am sorry about your mom having melanoma but you are in the right place for support and information. Many of us have done or are doing ipilimumab or YERVOY. You can put the drug name in the search part of this chat board and lots of posts will come up. You can also read my profile too.  I have posted extensively on my personal expereince with the drug…including side effects and my response. I am by the way a COMPLETE RESPONDER!! I am NED (No Evidence of Disease) for 6 months now, I feel great and I am working full time.

          Please try the search feature of this MPIP board as lots of information will pop up. Others may respond here too.

          Vermont_Donna, stage 3a, NED

          • September 20, 2011 at 10:09 pm
          Vermont_Donna
          Participant

            Hi,

            I am sorry about your mom having melanoma but you are in the right place for support and information. Many of us have done or are doing ipilimumab or YERVOY. You can put the drug name in the search part of this chat board and lots of posts will come up. You can also read my profile too.  I have posted extensively on my personal expereince with the drug…including side effects and my response. I am by the way a COMPLETE RESPONDER!! I am NED (No Evidence of Disease) for 6 months now, I feel great and I am working full time.

            Please try the search feature of this MPIP board as lots of information will pop up. Others may respond here too.

            Vermont_Donna, stage 3a, NED

            • September 21, 2011 at 1:00 am
            King
            Participant

              Hi Plaza,

               

              I don't know if I'm reading your post correctly or not.  Are you aware that Yervoy is now the name of the drug that was named Ipilimumab when in trials?  Yervoy was FDA approved in March 2011, I think.  Of course, Ipi was in trials at various dosages, etc but it is the same drug.  Sorry, if you already knew that.

               

              Best of luck to your Mom.

               

              Stay Strong
              King

              Stage IV 7/05 Liver mets

              • September 21, 2011 at 1:00 am
              King
              Participant

                Hi Plaza,

                 

                I don't know if I'm reading your post correctly or not.  Are you aware that Yervoy is now the name of the drug that was named Ipilimumab when in trials?  Yervoy was FDA approved in March 2011, I think.  Of course, Ipi was in trials at various dosages, etc but it is the same drug.  Sorry, if you already knew that.

                 

                Best of luck to your Mom.

                 

                Stay Strong
                King

                Stage IV 7/05 Liver mets

                • September 21, 2011 at 10:32 am
                JerryfromFauq
                Participant

                  Even if your Mom cannot get back into the trial, her Onc can still prescribe the Ipi (Yervoy) for her.  If she has insurance, that is great.  If she doesn't have or has problems meeting whatever copay might be required, contact the company and they have a program to help people that need assistance with affording the medication. 

                    If you read Jimmy B's history (A medical researcher) and posts, you will see that even though Ipi did not resolve his melanoma, that his research shows a very likely way that the Ipi followed by IL-2 on a certain timetable has resulted in him being NED.

                    IL-2 has made some NED.  Some for 20 years!  Some of us, like me, The IL-2 has not made NED, but has stabilized us long enough that other things have come along and we are still going well beyond our given 6 month expiration date. 

                     I understand that Ipi has people still going that has been on it for many years, so don't give up yet if she can get back on Ipi.  (The company makes more money if she gets it without being on a trial.)

                  • September 21, 2011 at 10:32 am
                  JerryfromFauq
                  Participant

                    Even if your Mom cannot get back into the trial, her Onc can still prescribe the Ipi (Yervoy) for her.  If she has insurance, that is great.  If she doesn't have or has problems meeting whatever copay might be required, contact the company and they have a program to help people that need assistance with affording the medication. 

                      If you read Jimmy B's history (A medical researcher) and posts, you will see that even though Ipi did not resolve his melanoma, that his research shows a very likely way that the Ipi followed by IL-2 on a certain timetable has resulted in him being NED.

                      IL-2 has made some NED.  Some for 20 years!  Some of us, like me, The IL-2 has not made NED, but has stabilized us long enough that other things have come along and we are still going well beyond our given 6 month expiration date. 

                       I understand that Ipi has people still going that has been on it for many years, so don't give up yet if she can get back on Ipi.  (The company makes more money if she gets it without being on a trial.)

                    • September 23, 2011 at 3:48 pm
                    plaza
                    Participant

                      Thank you all so much for your responses. I'm happy to hear good news about yourselves and this drug. I am hopeful that my mom will get better. She is a fighter, it's the waiting part that I can't stand. I am also working with miles for melanoma. I really want to help people become aware of how deadly melanoma can be so you will all be in my thoughts and prayers. Again, thank you so much for the respones!

                      • September 23, 2011 at 3:48 pm
                      plaza
                      Participant

                        Thank you all so much for your responses. I'm happy to hear good news about yourselves and this drug. I am hopeful that my mom will get better. She is a fighter, it's the waiting part that I can't stand. I am also working with miles for melanoma. I really want to help people become aware of how deadly melanoma can be so you will all be in my thoughts and prayers. Again, thank you so much for the respones!

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