MRF-Logo2019-Horizontal-RGB
Info for SarahA Arthur’s mom who son has lots of brain mets
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Info for SarahA Arthur’s mom who son has lots of brain mets

› Forums › General Melanoma Community › Info for SarahA Arthur’s mom who son has lots of brain mets

  • Post
    • August 12, 2015 at 3:45 pm
    arthurjedi007
    Participant

      Wow Sarah it sounds like your son needs something to work really soon. 30 to 40 brain mets and already had lots of radiation. Poor guy. I feel so sorry for him.

      Keytruda might work a miracle but in my opinion he needs something really special. You already go to Chicago and that is where this trial is. It's at the University of Illinois in Chicago. The trial number is NCT02355535. One of the names for the medicine is PAC-1. It deals with melanoma and other cancers with a specific focus on the brain.

      You can call the nurse Palak Soni at 312 413 1069. Her email is [email protected]. She is very very sweet but talks a lot. Also still has a little bit of India accent but I could understand her fine. Also she can be a bit laid back and not into urgency but very gentle persuasion should get you in quick. Afterwards she was very quick in getting stuff done. Like she had the biopsy results in 2 weeks compared to the university of chicago 7 weeks.

      Another nurse that I didn't meet is Alisha Williams at 3124132746. [email protected]

      The doctor is Dr Oana Danciu who might be at 3129961581. [email protected]

      I reallly really really hope this helps. The only reason I knew of this trial is because brian or kevin or um can't remember who posted it about 6 months or so ago. When I was there in May I didn't see the doc just nurse Palak but I decided it was too scary to be the first person on this. The trial just started in May. Hopefully it will work a miracle for your son Arthur.

      Artie

    Viewing 5 reply threads
    • Replies
        • August 13, 2015 at 4:01 am
        s.aumann
        Participant

          Obviosly I figured out how to reply. Thanks, again, Artie!

            • August 20, 2015 at 6:07 am
            cbeckner98
            Participant

              Hi Artie and Sarah,

              I found this trial very interesting so talked to Alisha yesterday at the University of Chicago.  At this time, however, they are not taking any patients into the clinical trial with brain mets.  That will come in a later phase – likely in 6ish months from now – which isn't much help to all of us with brain mets now.  She also has a trial at University of Chicago which tests insulin-like growth hormone and those with stable brain mets are eligible, but it requires a trip out to Chicago which I'm not sure that we are up for right now.  Otherwise, there wasn't much for those with brain mets there…

              Good luck with all!  Hoping one of the immunotherapy treatment paths works for you!

              Carrie

               

              • August 20, 2015 at 6:07 am
              cbeckner98
              Participant

                Hi Artie and Sarah,

                I found this trial very interesting so talked to Alisha yesterday at the University of Chicago.  At this time, however, they are not taking any patients into the clinical trial with brain mets.  That will come in a later phase – likely in 6ish months from now – which isn't much help to all of us with brain mets now.  She also has a trial at University of Chicago which tests insulin-like growth hormone and those with stable brain mets are eligible, but it requires a trip out to Chicago which I'm not sure that we are up for right now.  Otherwise, there wasn't much for those with brain mets there…

                Good luck with all!  Hoping one of the immunotherapy treatment paths works for you!

                Carrie

                 

                • August 20, 2015 at 6:07 am
                cbeckner98
                Participant

                  Hi Artie and Sarah,

                  I found this trial very interesting so talked to Alisha yesterday at the University of Chicago.  At this time, however, they are not taking any patients into the clinical trial with brain mets.  That will come in a later phase – likely in 6ish months from now – which isn't much help to all of us with brain mets now.  She also has a trial at University of Chicago which tests insulin-like growth hormone and those with stable brain mets are eligible, but it requires a trip out to Chicago which I'm not sure that we are up for right now.  Otherwise, there wasn't much for those with brain mets there…

                  Good luck with all!  Hoping one of the immunotherapy treatment paths works for you!

                  Carrie

                   

                • August 13, 2015 at 4:01 am
                s.aumann
                Participant

                  Obviosly I figured out how to reply. Thanks, again, Artie!

                  • August 13, 2015 at 4:01 am
                  s.aumann
                  Participant

                    Obviosly I figured out how to reply. Thanks, again, Artie!

                    • August 16, 2015 at 1:43 pm
                    ed williams
                    Participant

                      Sarah, if I could just add one more idea to what Artie has given you. David A Reardon MD director of the center for neuro-oncology at the Dana-Farber Cancer Institute in Boston. I watched a webinar dated june 23, 2015, where Dr. Reardon talks about break throughs in cancer immunotherapy in Brain Cancer. Now most of the presentation was about Glioblastoma the most common type of brain cancer. He did talk in the question and answer section ( last 10 min of webinar) about trials using Immunotherapy for metastatic cancers. You can find the webinar by going to "Cancer Research Institute" clicking on "News and publications", then select "Learn from field experts" followed by " View Webinars". Dr Reardon is one of the leading guys in brain cancer research and he might be a good person to get in contact with. Sarah, I hope this is helpfull, wishing you the best!!!! Ed

                      • August 16, 2015 at 1:43 pm
                      ed williams
                      Participant

                        Sarah, if I could just add one more idea to what Artie has given you. David A Reardon MD director of the center for neuro-oncology at the Dana-Farber Cancer Institute in Boston. I watched a webinar dated june 23, 2015, where Dr. Reardon talks about break throughs in cancer immunotherapy in Brain Cancer. Now most of the presentation was about Glioblastoma the most common type of brain cancer. He did talk in the question and answer section ( last 10 min of webinar) about trials using Immunotherapy for metastatic cancers. You can find the webinar by going to "Cancer Research Institute" clicking on "News and publications", then select "Learn from field experts" followed by " View Webinars". Dr Reardon is one of the leading guys in brain cancer research and he might be a good person to get in contact with. Sarah, I hope this is helpfull, wishing you the best!!!! Ed

                        • August 16, 2015 at 1:43 pm
                        ed williams
                        Participant

                          Sarah, if I could just add one more idea to what Artie has given you. David A Reardon MD director of the center for neuro-oncology at the Dana-Farber Cancer Institute in Boston. I watched a webinar dated june 23, 2015, where Dr. Reardon talks about break throughs in cancer immunotherapy in Brain Cancer. Now most of the presentation was about Glioblastoma the most common type of brain cancer. He did talk in the question and answer section ( last 10 min of webinar) about trials using Immunotherapy for metastatic cancers. You can find the webinar by going to "Cancer Research Institute" clicking on "News and publications", then select "Learn from field experts" followed by " View Webinars". Dr Reardon is one of the leading guys in brain cancer research and he might be a good person to get in contact with. Sarah, I hope this is helpfull, wishing you the best!!!! Ed

                      Viewing 5 reply threads
                      • You must be logged in to reply to this topic.
                      About the MRF Patient Forum

                      The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                      The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                      Popular Topics