Help finding clinical trial
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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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