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Why are patients hesitant about enrolling in clinical trials?
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Why are patients hesitant about enrolling in clinical trials?

› Forums › General Melanoma Community › Why are patients hesitant about enrolling in clinical trials?

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      • August 31, 2016 at 1:51 pm
      WithinMySkin
      Participant
        One thing that is completely neglected in this article is the delay factor. It may take weeks, sometimes months, to find a clinical trial that will accept you, go through the extensive testing and paperwork necessary, and receive your first treatment. Every cancer patient feels the clock ticking, and if there are other options available immediately that have been proven to work, why go through the anxiety-riddled waiting period? This is a huge factor in a patient’s choice NOT to enroll in a trial.
        • August 31, 2016 at 1:51 pm
        WithinMySkin
        Participant
          One thing that is completely neglected in this article is the delay factor. It may take weeks, sometimes months, to find a clinical trial that will accept you, go through the extensive testing and paperwork necessary, and receive your first treatment. Every cancer patient feels the clock ticking, and if there are other options available immediately that have been proven to work, why go through the anxiety-riddled waiting period? This is a huge factor in a patient’s choice NOT to enroll in a trial.
            • August 31, 2016 at 4:44 pm
            beans920
            Participant

              That wasn't the case for me.  It took more time for the biopsy results, more time to schedule a surgeon to remove it, more time to schedule an oncologist visit to review everything and put a plan in place.  From my Dr. sitting down and going over a number of trials and me getting my first dose in the trial was  less than 2 weeks.  Beans

              • August 31, 2016 at 4:44 pm
              beans920
              Participant

                That wasn't the case for me.  It took more time for the biopsy results, more time to schedule a surgeon to remove it, more time to schedule an oncologist visit to review everything and put a plan in place.  From my Dr. sitting down and going over a number of trials and me getting my first dose in the trial was  less than 2 weeks.  Beans

                • August 31, 2016 at 4:44 pm
                beans920
                Participant

                  That wasn't the case for me.  It took more time for the biopsy results, more time to schedule a surgeon to remove it, more time to schedule an oncologist visit to review everything and put a plan in place.  From my Dr. sitting down and going over a number of trials and me getting my first dose in the trial was  less than 2 weeks.  Beans

                  • August 31, 2016 at 4:52 pm
                  jvictoria
                  Participant

                    My experience was very challenging, to the point where I had to get very involved with all parties. It took well over 3 months to get all the i's dotted and t's crossed. The clincal trial people had to redo the genetic testing 3 times. I made it on the trial with 2 days to spare… completly stressing out every step of the way.

                    • August 31, 2016 at 4:52 pm
                    jvictoria
                    Participant

                      My experience was very challenging, to the point where I had to get very involved with all parties. It took well over 3 months to get all the i's dotted and t's crossed. The clincal trial people had to redo the genetic testing 3 times. I made it on the trial with 2 days to spare… completly stressing out every step of the way.

                      • August 31, 2016 at 4:52 pm
                      jvictoria
                      Participant

                        My experience was very challenging, to the point where I had to get very involved with all parties. It took well over 3 months to get all the i's dotted and t's crossed. The clincal trial people had to redo the genetic testing 3 times. I made it on the trial with 2 days to spare… completly stressing out every step of the way.

                      • August 31, 2016 at 1:51 pm
                      WithinMySkin
                      Participant
                        One thing that is completely neglected in this article is the delay factor. It may take weeks, sometimes months, to find a clinical trial that will accept you, go through the extensive testing and paperwork necessary, and receive your first treatment. Every cancer patient feels the clock ticking, and if there are other options available immediately that have been proven to work, why go through the anxiety-riddled waiting period? This is a huge factor in a patient’s choice NOT to enroll in a trial.
                        • September 1, 2016 at 5:35 am
                        Cathy M
                        Participant
                          The time factor is critical to a cancer patient. After jumping hoops for 10 weeks without ANY treatment my husband was denied access to a clinical trial because the biopsy specimen wasn’t adequate. We only found this out after our oncologist called the trial sponsor. They didn’t even bother to notify our oncologist!!

                          Another consideration is the means to physically travel to a clinical trial location … be it personal finances and/or patient’s physical condition.

                            • September 1, 2016 at 3:07 pm
                            jvictoria
                            Participant

                              Desertsun… That is what happened to me "biopsy specimen inadequate" it took literally 3 iterations of sending specimens to the clinical trial people… on the third attempt, I had to get involved. Called the pathology department directly, asked them what they were doing and found out that they were sending lymph node samples that had microscopic signs of Melanoma. I asked them to send a sample of the original tumor which had a much larger sample. Problem solved.

                              But, the stress it caused me and my family was terrible. It pains me at how impersonal this whole process can be.

                              • September 1, 2016 at 3:07 pm
                              jvictoria
                              Participant

                                Desertsun… That is what happened to me "biopsy specimen inadequate" it took literally 3 iterations of sending specimens to the clinical trial people… on the third attempt, I had to get involved. Called the pathology department directly, asked them what they were doing and found out that they were sending lymph node samples that had microscopic signs of Melanoma. I asked them to send a sample of the original tumor which had a much larger sample. Problem solved.

                                But, the stress it caused me and my family was terrible. It pains me at how impersonal this whole process can be.

                                • September 1, 2016 at 3:07 pm
                                jvictoria
                                Participant

                                  Desertsun… That is what happened to me "biopsy specimen inadequate" it took literally 3 iterations of sending specimens to the clinical trial people… on the third attempt, I had to get involved. Called the pathology department directly, asked them what they were doing and found out that they were sending lymph node samples that had microscopic signs of Melanoma. I asked them to send a sample of the original tumor which had a much larger sample. Problem solved.

                                  But, the stress it caused me and my family was terrible. It pains me at how impersonal this whole process can be.

                                  • September 1, 2016 at 10:56 pm
                                  Cathy M
                                  Participant

                                    Agreed Juan…the stress factor gets to be almost unbearable. My husband had just learned of progression after about 9 months of stability with his targeted therapy, Mekinist. After our wait and "the hoops" we couldn't stand it any longer and ditched that clinical trial when they said "inadequate specimen" and went for Keytruda. Seems to have been a good move as Keytruda held his melanoma (liver, lungs) for 1 year before his recent progression.

                                    • September 1, 2016 at 10:56 pm
                                    Cathy M
                                    Participant

                                      Agreed Juan…the stress factor gets to be almost unbearable. My husband had just learned of progression after about 9 months of stability with his targeted therapy, Mekinist. After our wait and "the hoops" we couldn't stand it any longer and ditched that clinical trial when they said "inadequate specimen" and went for Keytruda. Seems to have been a good move as Keytruda held his melanoma (liver, lungs) for 1 year before his recent progression.

                                      • September 1, 2016 at 10:56 pm
                                      Cathy M
                                      Participant

                                        Agreed Juan…the stress factor gets to be almost unbearable. My husband had just learned of progression after about 9 months of stability with his targeted therapy, Mekinist. After our wait and "the hoops" we couldn't stand it any longer and ditched that clinical trial when they said "inadequate specimen" and went for Keytruda. Seems to have been a good move as Keytruda held his melanoma (liver, lungs) for 1 year before his recent progression.

                                      • September 1, 2016 at 5:35 am
                                      Cathy M
                                      Participant
                                        The time factor is critical to a cancer patient. After jumping hoops for 10 weeks without ANY treatment my husband was denied access to a clinical trial because the biopsy specimen wasn’t adequate. We only found this out after our oncologist called the trial sponsor. They didn’t even bother to notify our oncologist!!

                                        Another consideration is the means to physically travel to a clinical trial location … be it personal finances and/or patient’s physical condition.

                                        • September 1, 2016 at 5:35 am
                                        Cathy M
                                        Participant
                                          The time factor is critical to a cancer patient. After jumping hoops for 10 weeks without ANY treatment my husband was denied access to a clinical trial because the biopsy specimen wasn’t adequate. We only found this out after our oncologist called the trial sponsor. They didn’t even bother to notify our oncologist!!

                                          Another consideration is the means to physically travel to a clinical trial location … be it personal finances and/or patient’s physical condition.

                                          • September 8, 2016 at 2:00 pm
                                          Hukill
                                          Participant

                                            I would not enroll in one because you don't know what you are getting. You may get the drug, you may get a placebo but you wont know.

                                            • September 8, 2016 at 2:00 pm
                                            Hukill
                                            Participant

                                              I would not enroll in one because you don't know what you are getting. You may get the drug, you may get a placebo but you wont know.

                                              • September 8, 2016 at 2:00 pm
                                              Hukill
                                              Participant

                                                I would not enroll in one because you don't know what you are getting. You may get the drug, you may get a placebo but you wont know.

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