clinical trial questions

Forums General Melanoma Community clinical trial questions

  • Post
    gregor913
    Participant
      Hi I’m currently 3b stage. I was just wondering how clinical trials work. I have hmo insurance.

      1. Do you have to go to the hospital where the trial is at etc travel.

      2. Who pays for the trial. Is there any cost for us.

      3. Does my insurance have anything to do with the trial.

      4. Does anyone know of any adjuvant trial options I can enter. I’m in the Chicago area.

      5. Excluding clinical trial. If I take a drug like ipi since it’s approved now. Will the drug be covered in the future if I need to take it again.

      Thanks Greg

    Viewing 11 reply threads
    • Replies
        arthurjedi007
        Participant

          1 typically yes you have to travel where the goal is. Dr Luke and dr Gajewski have some good melanoma work there in Chicago at the university of Chicago.

          2 depends. If the med is already FDA approved for us and they are combining it with something new then you insurance would have to cover the keytruda. At least thst was my experience when I almost got into a trial. The new med the trial covers. Some trials might cover some travel expenses depending how far away you are

          3 sometimes for things th trial does not cover

          4 see doc's at 1 

          5 if you have a good response to ipi you shouldn't need it again except maybe the maintenance doses. But really whether insurance covers something depends on how good your doc is when they talk to the insurance doc.

          Hope that helps

          Artie

          arthurjedi007
          Participant

            1 typically yes you have to travel where the goal is. Dr Luke and dr Gajewski have some good melanoma work there in Chicago at the university of Chicago.

            2 depends. If the med is already FDA approved for us and they are combining it with something new then you insurance would have to cover the keytruda. At least thst was my experience when I almost got into a trial. The new med the trial covers. Some trials might cover some travel expenses depending how far away you are

            3 sometimes for things th trial does not cover

            4 see doc's at 1 

            5 if you have a good response to ipi you shouldn't need it again except maybe the maintenance doses. But really whether insurance covers something depends on how good your doc is when they talk to the insurance doc.

            Hope that helps

            Artie

            arthurjedi007
            Participant

              1 typically yes you have to travel where the goal is. Dr Luke and dr Gajewski have some good melanoma work there in Chicago at the university of Chicago.

              2 depends. If the med is already FDA approved for us and they are combining it with something new then you insurance would have to cover the keytruda. At least thst was my experience when I almost got into a trial. The new med the trial covers. Some trials might cover some travel expenses depending how far away you are

              3 sometimes for things th trial does not cover

              4 see doc's at 1 

              5 if you have a good response to ipi you shouldn't need it again except maybe the maintenance doses. But really whether insurance covers something depends on how good your doc is when they talk to the insurance doc.

              Hope that helps

              Artie

              BrianP
              Participant

                I can only speak from my experience which seems to mirror Artie's.

                1) Yes.

                2) Yes.  My experience is the trial will pay for the experimental drug but your insurance will pay for just about everything else unless it is something that can't be categorized as "standard of care."

                3) Yes.  You will need to make sure your insurance company will help cover clinical trial costs.  My primary insurance did not cover clinical trials but fortunately I had two insurance plans and my secondary did.  I think under the ACA all insurance companies now have to support clinical trials now but you should check to make sure.

                4) I would paste a link here but I have not been able to paste anything for a while on this site.  If you go to clinicaltrials.gov and in the search window type "melanoma" and "adjuvant".  It will show all the trials with those keywords.  You can then select the map tab at the top and filter down to areas you are interested in.  The site isn't always the most up to date but a good place to start. 

                5) Yes.  Patients who have had a good response to Ipi and then recurred later have had good response to Ipi the second time around.  If your insurance covered it the first time I'm sure they would cover it the second time.

                 

                Most major cancer treatment centers also have a website listing their clinical trials.  That is another good place to research clinical trials. 

                This site used to have a free clinical trial finder service.  Again I can't paste the link but look on the home page.  You basically fill out some information and someone will call you and ask you some questions and try and find you trials that fit your situation.  It doesn't cost a thing so I would definitely give it a try.

                Good luck to you.

                Brian

                BrianP
                Participant

                  I can only speak from my experience which seems to mirror Artie's.

                  1) Yes.

                  2) Yes.  My experience is the trial will pay for the experimental drug but your insurance will pay for just about everything else unless it is something that can't be categorized as "standard of care."

                  3) Yes.  You will need to make sure your insurance company will help cover clinical trial costs.  My primary insurance did not cover clinical trials but fortunately I had two insurance plans and my secondary did.  I think under the ACA all insurance companies now have to support clinical trials now but you should check to make sure.

                  4) I would paste a link here but I have not been able to paste anything for a while on this site.  If you go to clinicaltrials.gov and in the search window type "melanoma" and "adjuvant".  It will show all the trials with those keywords.  You can then select the map tab at the top and filter down to areas you are interested in.  The site isn't always the most up to date but a good place to start. 

                  5) Yes.  Patients who have had a good response to Ipi and then recurred later have had good response to Ipi the second time around.  If your insurance covered it the first time I'm sure they would cover it the second time.

                   

                  Most major cancer treatment centers also have a website listing their clinical trials.  That is another good place to research clinical trials. 

                  This site used to have a free clinical trial finder service.  Again I can't paste the link but look on the home page.  You basically fill out some information and someone will call you and ask you some questions and try and find you trials that fit your situation.  It doesn't cost a thing so I would definitely give it a try.

                  Good luck to you.

                  Brian

                  BrianP
                  Participant

                    I can only speak from my experience which seems to mirror Artie's.

                    1) Yes.

                    2) Yes.  My experience is the trial will pay for the experimental drug but your insurance will pay for just about everything else unless it is something that can't be categorized as "standard of care."

                    3) Yes.  You will need to make sure your insurance company will help cover clinical trial costs.  My primary insurance did not cover clinical trials but fortunately I had two insurance plans and my secondary did.  I think under the ACA all insurance companies now have to support clinical trials now but you should check to make sure.

                    4) I would paste a link here but I have not been able to paste anything for a while on this site.  If you go to clinicaltrials.gov and in the search window type "melanoma" and "adjuvant".  It will show all the trials with those keywords.  You can then select the map tab at the top and filter down to areas you are interested in.  The site isn't always the most up to date but a good place to start. 

                    5) Yes.  Patients who have had a good response to Ipi and then recurred later have had good response to Ipi the second time around.  If your insurance covered it the first time I'm sure they would cover it the second time.

                     

                    Most major cancer treatment centers also have a website listing their clinical trials.  That is another good place to research clinical trials. 

                    This site used to have a free clinical trial finder service.  Again I can't paste the link but look on the home page.  You basically fill out some information and someone will call you and ask you some questions and try and find you trials that fit your situation.  It doesn't cost a thing so I would definitely give it a try.

                    Good luck to you.

                    Brian

                    Bubbles
                    Participant

                      I agree with all that Artie and Brian had to say. Be sure your insurance is accepted at the medical center and oncologist you settle on. Be sure you aware of your out of pocket charges for doctor visits, scans, and deductibles. Generally, only the drug and research labs are covered by the company in question. Here is a post I put together a bit ago regarding trial search engines. Each heading is a link to their site.  

                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/searching-for-melanoma-trials-down-low.html

                      Good luck. Hope it helps. Celeste

                      Bubbles
                      Participant

                        I agree with all that Artie and Brian had to say. Be sure your insurance is accepted at the medical center and oncologist you settle on. Be sure you aware of your out of pocket charges for doctor visits, scans, and deductibles. Generally, only the drug and research labs are covered by the company in question. Here is a post I put together a bit ago regarding trial search engines. Each heading is a link to their site.  

                        http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/searching-for-melanoma-trials-down-low.html

                        Good luck. Hope it helps. Celeste

                        Bubbles
                        Participant

                          I agree with all that Artie and Brian had to say. Be sure your insurance is accepted at the medical center and oncologist you settle on. Be sure you aware of your out of pocket charges for doctor visits, scans, and deductibles. Generally, only the drug and research labs are covered by the company in question. Here is a post I put together a bit ago regarding trial search engines. Each heading is a link to their site.  

                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/searching-for-melanoma-trials-down-low.html

                          Good luck. Hope it helps. Celeste

                          geriakt
                          Participant

                            I am on CA209-238 (NCT02388906) IPI/NIVO Stage IIIB Resected.

                            You need to have insurance or they will not take you into a Clinical Study of this type. There are many side effects in these trials and you need the insurance if something goes wrong and you need to be hospitalized. The trial will not cover any side effects. If you do not have insurance you can search the NIC (near Washington DC) to see if they can help you with anything and sometimes the NIC will pay travel expenses.

                            My trial requires me to drive about 120 mile round trip to the hospital that offers the trial.  I am not paid for the travel or time (this in on my own).  I need to be at the hospital for about 32 treatments in a 50 week period. I have a PPO under Blue Cross of FL and the treatment that is considered standard care is covered by my insurance after I meet my deductibles.  The trial pays for my drugs, infusion room and time and my weekly Dr visit to approve the visit.  I have to pay for all my labs and some of my CT scans which will add up to a lot of money over the year so it is not free. I also had to pay to have my power port surgically implanted (and for removal)

                            As a stage IIIB you are now eligible for IPI, but it is a higher dose and I think only 4 infusions.  I think if you just did that through your local Oncologist it may be cheaper for you in the long run. Too bad you where not able to plan earlier to get the IPI earlier this year and treatment will take you into a new year and a new deductible for 2016. You will need to get pre approval for IPI from your insurance before you can start. 

                            I considered canceling my trail when the IPI was approved by the FDA, but I have already received my 4 treatments of IPI at 10 mg/KG and I really think I am receiving the NIVO anyhow which I feel is a much safer drug.

                            Tom

                            geriakt
                            Participant

                              I am on CA209-238 (NCT02388906) IPI/NIVO Stage IIIB Resected.

                              You need to have insurance or they will not take you into a Clinical Study of this type. There are many side effects in these trials and you need the insurance if something goes wrong and you need to be hospitalized. The trial will not cover any side effects. If you do not have insurance you can search the NIC (near Washington DC) to see if they can help you with anything and sometimes the NIC will pay travel expenses.

                              My trial requires me to drive about 120 mile round trip to the hospital that offers the trial.  I am not paid for the travel or time (this in on my own).  I need to be at the hospital for about 32 treatments in a 50 week period. I have a PPO under Blue Cross of FL and the treatment that is considered standard care is covered by my insurance after I meet my deductibles.  The trial pays for my drugs, infusion room and time and my weekly Dr visit to approve the visit.  I have to pay for all my labs and some of my CT scans which will add up to a lot of money over the year so it is not free. I also had to pay to have my power port surgically implanted (and for removal)

                              As a stage IIIB you are now eligible for IPI, but it is a higher dose and I think only 4 infusions.  I think if you just did that through your local Oncologist it may be cheaper for you in the long run. Too bad you where not able to plan earlier to get the IPI earlier this year and treatment will take you into a new year and a new deductible for 2016. You will need to get pre approval for IPI from your insurance before you can start. 

                              I considered canceling my trail when the IPI was approved by the FDA, but I have already received my 4 treatments of IPI at 10 mg/KG and I really think I am receiving the NIVO anyhow which I feel is a much safer drug.

                              Tom

                              geriakt
                              Participant

                                I am on CA209-238 (NCT02388906) IPI/NIVO Stage IIIB Resected.

                                You need to have insurance or they will not take you into a Clinical Study of this type. There are many side effects in these trials and you need the insurance if something goes wrong and you need to be hospitalized. The trial will not cover any side effects. If you do not have insurance you can search the NIC (near Washington DC) to see if they can help you with anything and sometimes the NIC will pay travel expenses.

                                My trial requires me to drive about 120 mile round trip to the hospital that offers the trial.  I am not paid for the travel or time (this in on my own).  I need to be at the hospital for about 32 treatments in a 50 week period. I have a PPO under Blue Cross of FL and the treatment that is considered standard care is covered by my insurance after I meet my deductibles.  The trial pays for my drugs, infusion room and time and my weekly Dr visit to approve the visit.  I have to pay for all my labs and some of my CT scans which will add up to a lot of money over the year so it is not free. I also had to pay to have my power port surgically implanted (and for removal)

                                As a stage IIIB you are now eligible for IPI, but it is a higher dose and I think only 4 infusions.  I think if you just did that through your local Oncologist it may be cheaper for you in the long run. Too bad you where not able to plan earlier to get the IPI earlier this year and treatment will take you into a new year and a new deductible for 2016. You will need to get pre approval for IPI from your insurance before you can start. 

                                I considered canceling my trail when the IPI was approved by the FDA, but I have already received my 4 treatments of IPI at 10 mg/KG and I really think I am receiving the NIVO anyhow which I feel is a much safer drug.

                                Tom

                                  gregor913
                                  Participant

                                    Ive already seen some trials in my area . Yervory hi/low dose vs interferon, ipi/nivo and ipi with interferon trial. Im only 34 years old and there are some things that scare me about Yervoy and the side effects such as colitis. Ive seen other stage 3 take a watch and wait but I feel like I want to do something.  Its just a tough decision on what I want to do. How is the Yervoy high dose effecting you?  Thanks for the detailed reply. Any bit of information helps. Greg

                                    gregor913
                                    Participant

                                      Ive already seen some trials in my area . Yervory hi/low dose vs interferon, ipi/nivo and ipi with interferon trial. Im only 34 years old and there are some things that scare me about Yervoy and the side effects such as colitis. Ive seen other stage 3 take a watch and wait but I feel like I want to do something.  Its just a tough decision on what I want to do. How is the Yervoy high dose effecting you?  Thanks for the detailed reply. Any bit of information helps. Greg

                                      geriakt
                                      Participant

                                        With my trial I am getting high dose ipi but I think the ipi is the placebo and I am getting nivo. I only have side effects after my nivo infusions. Rash and back pain. 

                                        geriakt
                                        Participant

                                          With my trial I am getting high dose ipi but I think the ipi is the placebo and I am getting nivo. I only have side effects after my nivo infusions. Rash and back pain. 

                                          geriakt
                                          Participant

                                            With my trial I am getting high dose ipi but I think the ipi is the placebo and I am getting nivo. I only have side effects after my nivo infusions. Rash and back pain. 

                                            gregor913
                                            Participant

                                              Ive already seen some trials in my area . Yervory hi/low dose vs interferon, ipi/nivo and ipi with interferon trial. Im only 34 years old and there are some things that scare me about Yervoy and the side effects such as colitis. Ive seen other stage 3 take a watch and wait but I feel like I want to do something.  Its just a tough decision on what I want to do. How is the Yervoy high dose effecting you?  Thanks for the detailed reply. Any bit of information helps. Greg

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