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Help finding clinical trial

› Forums › General Melanoma Community › Help finding clinical trial

  • Post
    • September 15, 2016 at 9:00 pm
    Jubes
    Participant

      Hi guys

      i have a friend with glioblastoma who just had the brain tumour removed but has been given two years to live if she does radio and chemo now. Julie's last post got me thinking to look for clinical trials for her on clinical trials.org

      just wondering if any of you happen to know where there are any trials or where the best doctors are in the us for brain tumours

      thanks

      anne-Louise

    Viewing 23 reply threads
    • Replies
        • September 15, 2016 at 9:45 pm
        debwray
        Participant

          Hi,

          Just tried a general search for USA.but there are too many recruiting to be able to sift and sort.

          You could try the advanced search option for open trials in the USA. that would be workable for travel.. Then maybe open it up if options are not attractive. 

          There is one at MD Anderson with pembro but detail excludes your friend as surgery already done…but am sure I have read that many of the immunotherapies are being trialled on brain tumours so with a bit of luck you will be able to put together a shortlist.

          Would put in links but am fairly inept with a tablet…

          Best of luck

          Deb

           

          • September 15, 2016 at 9:45 pm
          debwray
          Participant

            Hi,

            Just tried a general search for USA.but there are too many recruiting to be able to sift and sort.

            You could try the advanced search option for open trials in the USA. that would be workable for travel.. Then maybe open it up if options are not attractive. 

            There is one at MD Anderson with pembro but detail excludes your friend as surgery already done…but am sure I have read that many of the immunotherapies are being trialled on brain tumours so with a bit of luck you will be able to put together a shortlist.

            Would put in links but am fairly inept with a tablet…

            Best of luck

            Deb

             

            • September 15, 2016 at 9:45 pm
            debwray
            Participant

              Hi,

              Just tried a general search for USA.but there are too many recruiting to be able to sift and sort.

              You could try the advanced search option for open trials in the USA. that would be workable for travel.. Then maybe open it up if options are not attractive. 

              There is one at MD Anderson with pembro but detail excludes your friend as surgery already done…but am sure I have read that many of the immunotherapies are being trialled on brain tumours so with a bit of luck you will be able to put together a shortlist.

              Would put in links but am fairly inept with a tablet…

              Best of luck

              Deb

               

              • September 15, 2016 at 9:53 pm
              ed williams
              Participant

                Hi anne-Louise, I can't help as far as trials but I have listen to Dr.Reardon from Boston speak on a couple of different web site like Onclive, he is a Brain surgeon and the link I am giving you is pretty detailed about current research in the field of Glioblastoma. I hope it helps!!!Ed  https://www.youtube.com/watch?v=2QanZ5CrjsM

                • September 15, 2016 at 9:53 pm
                ed williams
                Participant

                  Hi anne-Louise, I can't help as far as trials but I have listen to Dr.Reardon from Boston speak on a couple of different web site like Onclive, he is a Brain surgeon and the link I am giving you is pretty detailed about current research in the field of Glioblastoma. I hope it helps!!!Ed  https://www.youtube.com/watch?v=2QanZ5CrjsM

                  • September 15, 2016 at 9:53 pm
                  ed williams
                  Participant

                    Hi anne-Louise, I can't help as far as trials but I have listen to Dr.Reardon from Boston speak on a couple of different web site like Onclive, he is a Brain surgeon and the link I am giving you is pretty detailed about current research in the field of Glioblastoma. I hope it helps!!!Ed  https://www.youtube.com/watch?v=2QanZ5CrjsM

                    • September 15, 2016 at 10:40 pm
                    Polymath
                    Participant

                      Hi Anne-Louise,

                      Not to complicate matters but be sure to check about insurance issues.  My understanding is trials bill your insurance for a myriad of charges which would have been considered routine care.  Some, like scans and other hospital charges could be really expensive if her insurance would not cover. 

                      Gary

                      • September 15, 2016 at 10:40 pm
                      Polymath
                      Participant

                        Hi Anne-Louise,

                        Not to complicate matters but be sure to check about insurance issues.  My understanding is trials bill your insurance for a myriad of charges which would have been considered routine care.  Some, like scans and other hospital charges could be really expensive if her insurance would not cover. 

                        Gary

                        • September 15, 2016 at 10:40 pm
                        Polymath
                        Participant

                          Hi Anne-Louise,

                          Not to complicate matters but be sure to check about insurance issues.  My understanding is trials bill your insurance for a myriad of charges which would have been considered routine care.  Some, like scans and other hospital charges could be really expensive if her insurance would not cover. 

                          Gary

                          • September 15, 2016 at 10:47 pm
                          BrianP
                          Participant

                            Anne-Louise,

                            I don't know if they are the leading institution but it seems like I've seen some news lately on advancements at Duke concerning brain tumors.  You gotta figure MDAnderson and MSK are near the top of field. 

                            If you go on clinicaltrials.org and type in " "glioblastoma" and "Duke" (or the name of any institution you are interested in) you can see a list of some of their trials.  You could also go directly to the institution's website. 

                            As a sidenote a friend of ours adult daughter was treated at Duke.  She is doing remarkably well but I was told the other 4 patients in the trial did not fare as well. 

                            Brian

                            • September 15, 2016 at 10:47 pm
                            BrianP
                            Participant

                              Anne-Louise,

                              I don't know if they are the leading institution but it seems like I've seen some news lately on advancements at Duke concerning brain tumors.  You gotta figure MDAnderson and MSK are near the top of field. 

                              If you go on clinicaltrials.org and type in " "glioblastoma" and "Duke" (or the name of any institution you are interested in) you can see a list of some of their trials.  You could also go directly to the institution's website. 

                              As a sidenote a friend of ours adult daughter was treated at Duke.  She is doing remarkably well but I was told the other 4 patients in the trial did not fare as well. 

                              Brian

                              • September 15, 2016 at 10:47 pm
                              BrianP
                              Participant

                                Anne-Louise,

                                I don't know if they are the leading institution but it seems like I've seen some news lately on advancements at Duke concerning brain tumors.  You gotta figure MDAnderson and MSK are near the top of field. 

                                If you go on clinicaltrials.org and type in " "glioblastoma" and "Duke" (or the name of any institution you are interested in) you can see a list of some of their trials.  You could also go directly to the institution's website. 

                                As a sidenote a friend of ours adult daughter was treated at Duke.  She is doing remarkably well but I was told the other 4 patients in the trial did not fare as well. 

                                Brian

                                • September 16, 2016 at 12:16 am
                                Bubbles
                                Participant

                                  Sorry for your friend, Anne-Louise.  Have your friend check on BRAF-MEK options! Oddly enough melanoma and glioblastomas have overlap in their targeted theapies!  C

                                  • September 16, 2016 at 12:16 am
                                  Bubbles
                                  Participant

                                    Sorry for your friend, Anne-Louise.  Have your friend check on BRAF-MEK options! Oddly enough melanoma and glioblastomas have overlap in their targeted theapies!  C

                                    • September 16, 2016 at 12:16 am
                                    Bubbles
                                    Participant

                                      Sorry for your friend, Anne-Louise.  Have your friend check on BRAF-MEK options! Oddly enough melanoma and glioblastomas have overlap in their targeted theapies!  C

                                      • September 16, 2016 at 6:36 pm
                                      kylez
                                      Participant

                                        Hi,

                                        The National Brain Tumor Society sponsors a clinical trial matching service for patients with primary brain tumors like glioblastoma. The information to ger in touch with the service is here:

                                        http://www.emergingmed.com/networks/NBTS/

                                        I've been impressed with emerging med, which MRF uses under a different sponsorship to match trials for melanoma patients.

                                         

                                        • September 16, 2016 at 6:36 pm
                                        kylez
                                        Participant

                                          Hi,

                                          The National Brain Tumor Society sponsors a clinical trial matching service for patients with primary brain tumors like glioblastoma. The information to ger in touch with the service is here:

                                          http://www.emergingmed.com/networks/NBTS/

                                          I've been impressed with emerging med, which MRF uses under a different sponsorship to match trials for melanoma patients.

                                           

                                          • September 16, 2016 at 6:36 pm
                                          kylez
                                          Participant

                                            Hi,

                                            The National Brain Tumor Society sponsors a clinical trial matching service for patients with primary brain tumors like glioblastoma. The information to ger in touch with the service is here:

                                            http://www.emergingmed.com/networks/NBTS/

                                            I've been impressed with emerging med, which MRF uses under a different sponsorship to match trials for melanoma patients.

                                             

                                            • September 17, 2016 at 7:15 am
                                            Jubes
                                            Participant

                                              Thank you all so much!! 

                                              Great stuff to start researching for her. Her own doctors have not recommended any trials. I think she just missed one here that closed, and maybe they are not thinking of the US. But all her friends are urging her to have her plan b in place because of the bad prognosis 

                                              • September 17, 2016 at 7:15 am
                                              Jubes
                                              Participant

                                                Thank you all so much!! 

                                                Great stuff to start researching for her. Her own doctors have not recommended any trials. I think she just missed one here that closed, and maybe they are not thinking of the US. But all her friends are urging her to have her plan b in place because of the bad prognosis 

                                                • September 17, 2016 at 7:15 am
                                                Jubes
                                                Participant

                                                  Thank you all so much!! 

                                                  Great stuff to start researching for her. Her own doctors have not recommended any trials. I think she just missed one here that closed, and maybe they are not thinking of the US. But all her friends are urging her to have her plan b in place because of the bad prognosis 

                                                  • September 17, 2016 at 9:36 pm
                                                  kylez
                                                  Participant

                                                    Another thing — a ranking of US neurosurgery programs. This is the only one I know of. http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery

                                                    I had a great experience getting neurosurgery (double craniotomy) at the one currently ranked #5 on the list (UCSF). 

                                                    • September 17, 2016 at 9:36 pm
                                                    kylez
                                                    Participant

                                                      Another thing — a ranking of US neurosurgery programs. This is the only one I know of. http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery

                                                      I had a great experience getting neurosurgery (double craniotomy) at the one currently ranked #5 on the list (UCSF). 

                                                      • September 17, 2016 at 9:36 pm
                                                      kylez
                                                      Participant

                                                        Another thing — a ranking of US neurosurgery programs. This is the only one I know of. http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery

                                                        I had a great experience getting neurosurgery (double craniotomy) at the one currently ranked #5 on the list (UCSF). 

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