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ipilmumab

› Forums › General Melanoma Community › ipilmumab

  • Post
    • November 4, 2010 at 7:08 am
    Nebr78
    Participant

      I am back again.  Does anyone know how to get ipilimumab in Nebraska?  They have quit treating me as they think the chemos that will do any good will be too hard on the heart. I have had heart disease for 40+ yrs. and heart is not in good shape.  Maybe this ipil will do the job. Tumors are growing. Maybe the side effects of ipili will not affect my heart.  The FDA is taking a long time in approving it, it seems. Thanks.

      I am back again.  Does anyone know how to get ipilimumab in Nebraska?  They have quit treating me as they think the chemos that will do any good will be too hard on the heart. I have had heart disease for 40+ yrs. and heart is not in good shape.  Maybe this ipil will do the job. Tumors are growing. Maybe the side effects of ipili will not affect my heart.  The FDA is taking a long time in approving it, it seems. Thanks.

    Viewing 5 reply threads
    • Replies
        • November 4, 2010 at 11:20 am
        jim Breitfeller
        Participant

          You are going to need to go to a major Melanoma Care Center to recieve Ipi compassionate care.

          http://clinicaltrials.gov/ct2/show/study/NCT00495066?term=melanoma+Ipilimumab&recr=Open&rank=8&show_locs=Y#locn

           

           

          United States, Nebraska
          Creighton University Recruiting
          Omaha, Nebraska, United States, 68131
          Contact: Peter Silberstein, Site 123     402-280-3432        

           

          United States, Kansas
          Hutchinson Clinic Recruiting
          Hutchinson, Kansas, United States, 67502
          Contact: Mark R Fesen, Site 018     620-694-2053        

           

           

          United States, Colorado
          University of Colorado Anschutz Cancer Pavilion Recruiting
          Aurora, Colorado, United States, 80045
          Contact: William A. Robinson, Site 015     720-848-0561        
          Rocky Mountain Cancer Centers Recruiting
          Denver, Colorado, United States, 80218
          Contact: Allen Cohn, Site 095     303-580-6662        
          • November 4, 2010 at 11:20 am
          jim Breitfeller
          Participant

            You are going to need to go to a major Melanoma Care Center to recieve Ipi compassionate care.

            http://clinicaltrials.gov/ct2/show/study/NCT00495066?term=melanoma+Ipilimumab&recr=Open&rank=8&show_locs=Y#locn

             

             

            United States, Nebraska
            Creighton University Recruiting
            Omaha, Nebraska, United States, 68131
            Contact: Peter Silberstein, Site 123     402-280-3432        

             

            United States, Kansas
            Hutchinson Clinic Recruiting
            Hutchinson, Kansas, United States, 67502
            Contact: Mark R Fesen, Site 018     620-694-2053        

             

             

            United States, Colorado
            University of Colorado Anschutz Cancer Pavilion Recruiting
            Aurora, Colorado, United States, 80045
            Contact: William A. Robinson, Site 015     720-848-0561        
            Rocky Mountain Cancer Centers Recruiting
            Denver, Colorado, United States, 80218
            Contact: Allen Cohn, Site 095     303-580-6662        
            • November 4, 2010 at 12:35 pm
            lhaley
            Participant

              Charles,

              I know that you can get ippi at places that are not on that list! 

              I know of 2 oncologists that are offering the compassionate care in SC that are not on the list that someone just posted for you!  Both are not at major medical centers.  I don't know where you can find out in Nebraska but my suggestion is to either contact the company directly to ask or e-mail Tim at this site and see if he knows.

              Another thought is to change your heading and post again. Something like Ippi in Nebraska?  Someone posted the other day about being in the trial. Not sure if it was at one of the major cancer centers or not.

              Wishing you the best,

              Linda

              • November 4, 2010 at 12:35 pm
              lhaley
              Participant

                Charles,

                I know that you can get ippi at places that are not on that list! 

                I know of 2 oncologists that are offering the compassionate care in SC that are not on the list that someone just posted for you!  Both are not at major medical centers.  I don't know where you can find out in Nebraska but my suggestion is to either contact the company directly to ask or e-mail Tim at this site and see if he knows.

                Another thought is to change your heading and post again. Something like Ippi in Nebraska?  Someone posted the other day about being in the trial. Not sure if it was at one of the major cancer centers or not.

                Wishing you the best,

                Linda

                • November 4, 2010 at 12:54 pm
                Jackie W
                Participant

                  Creighton University is offering ipi.  The contact person is Peter Silberstein, phone number is 402-280-3432.  

                   

                  Jackie W

                    • November 7, 2010 at 4:30 am
                    Nebr78
                    Participant

                      I tried Creighton Un.   They won't touch me.  The lump in front of ear is starting to hurt quite a bit now.  Keep eating pain pills.

                      Can anyone tell me how big these bumps get.   Do they get real big and burst or what.  My family Dr. recommended I not have it cut out.  Lot of nerves in face and will look deformed.  Lump in lymp node growing but not much pain associated with that one.  However once in awhile I have pain in back of arm pit.  Lump is in front.  Sure is discouraging when you can't treat one illness because you have another one. (Heart)  I suppose if FDA ever approves ipili Dr.will not give it to me because of side effects.

                      • November 7, 2010 at 4:23 pm
                      jim Breitfeller
                      Participant

                        You might ask your doctor about

                        Topical Imiquimod in the Treatment

                        of Metastatic Melanoma to Skin.

                        http://archderm.ama-assn.org/cgi/reprint/139/3/273.pdf

                         

                        http://www.medscape.com/viewarticle/540908_3

                        • November 7, 2010 at 4:23 pm
                        jim Breitfeller
                        Participant

                          You might ask your doctor about

                          Topical Imiquimod in the Treatment

                          of Metastatic Melanoma to Skin.

                          http://archderm.ama-assn.org/cgi/reprint/139/3/273.pdf

                           

                          http://www.medscape.com/viewarticle/540908_3

                          • November 7, 2010 at 4:30 am
                          Nebr78
                          Participant

                            I tried Creighton Un.   They won't touch me.  The lump in front of ear is starting to hurt quite a bit now.  Keep eating pain pills.

                            Can anyone tell me how big these bumps get.   Do they get real big and burst or what.  My family Dr. recommended I not have it cut out.  Lot of nerves in face and will look deformed.  Lump in lymp node growing but not much pain associated with that one.  However once in awhile I have pain in back of arm pit.  Lump is in front.  Sure is discouraging when you can't treat one illness because you have another one. (Heart)  I suppose if FDA ever approves ipili Dr.will not give it to me because of side effects.

                          • November 4, 2010 at 12:54 pm
                          Jackie W
                          Participant

                            Creighton University is offering ipi.  The contact person is Peter Silberstein, phone number is 402-280-3432.  

                             

                            Jackie W

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