MRF-Logo2019-Horizontal-RGB
Need Neurologist in DC Baltimore Area?
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.

Need Neurologist in DC Baltimore Area?

› Forums › General Melanoma Community › Need Neurologist in DC Baltimore Area?

  • Post
    • February 19, 2016 at 9:46 am
    Gwenmorgan
    Participant

      I had 5 brain mets zapped with cyber knife in January and have had edema and my first big seizure and more ER trips.  I am back on Dex (4mg) x 3 and swollen like a pumpkin.  Oncology cannot continue immunotherapy until I am off steroids so we are switching back to BRAF which had little to no effect on my brain mets but did great on soft tissue.  My lungs were clear after 2 doses of ipi/nivo and no growth in my liver but CT showed a new marble sized spot in my left abdomen and there is a spot in my left forearm too which we will just assume is also a new growth…though my hope is more swelling of course.

      BRAF is fine but I already "failed" on it with brain mets with Lepto enhancements last October so I am not confident on success for more than a few weeks.  I don't want any new brain mets.  With swelling we are too big and I had a craniotomy last Spring and would like to avoid that again.

      I was only able to tolerate 2 doses of ipi/nivo before being hospitalized with colitis and I am anxious for a more aggressive approach that includes brain met successes.  

      Lombardi keeps mentioning upcoming trials but I am worried about jumping into things that are unproven.  

      I guess my goal here is to find a way to wean off steroids, control brain swelling, find treatments…

    Viewing 2 reply threads
    • Replies
        • February 19, 2016 at 5:45 pm
        Eileensulliv
        Participant

          Hi Gwen, I am so sorry you are going through all of this. I do not have any help with a neurologist, but I can tell you I receive excellent care at Johns Hopkins. I sent you a message through your profile, but I don't seem to have any success with that feature here. I hope you receive it! I am saying some prayers for you, that you may receive the help and treatment you need!

          • February 19, 2016 at 5:45 pm
          Eileensulliv
          Participant

            Hi Gwen, I am so sorry you are going through all of this. I do not have any help with a neurologist, but I can tell you I receive excellent care at Johns Hopkins. I sent you a message through your profile, but I don't seem to have any success with that feature here. I hope you receive it! I am saying some prayers for you, that you may receive the help and treatment you need!

              • February 21, 2016 at 3:29 am
              tschmith
              Participant

                I thought I had a concussion and went to the emergency room.  A CT scan was performed.  A mass presenting as cancer was found in my brain.  I was transported to Inova Fairfax and two days later the tumor was removed by Dr. Ben Nguyen of Atantic Brain and Spine.  Steretactic Radio Surgery followed.  This was in February of 2013 and while Melanoma has to other parts of my body, it has yet to return to my brain.  I really liked Dr. Nguyen. I also liked Dr. Jeffrey Mai.  He is also at Inova Fairfax.  Dr. Jae Lim operated on my spine (yes, I've been a mess but am still here!) and he was very good too!!! Dr. Lim is in the same practice as Dr. Nguyen, Atlantic Brain and Spine. 

                I have been treated at UVA, Hopkins, and am currently at Lombardi Cancer Center at Georgetown.  I was very happy with Hopkins, but at the time Dr. Lipson (Hopkins) wanted me to try Pembrolizumab and Hopkins didn't have it while Georgetown did. He referred me to Georgetown and I now see Dr. Michael Atkins. I really like him too!

                Good luck to you!  Hope and faith!

                Terie

                • February 21, 2016 at 3:29 am
                tschmith
                Participant

                  I thought I had a concussion and went to the emergency room.  A CT scan was performed.  A mass presenting as cancer was found in my brain.  I was transported to Inova Fairfax and two days later the tumor was removed by Dr. Ben Nguyen of Atantic Brain and Spine.  Steretactic Radio Surgery followed.  This was in February of 2013 and while Melanoma has to other parts of my body, it has yet to return to my brain.  I really liked Dr. Nguyen. I also liked Dr. Jeffrey Mai.  He is also at Inova Fairfax.  Dr. Jae Lim operated on my spine (yes, I've been a mess but am still here!) and he was very good too!!! Dr. Lim is in the same practice as Dr. Nguyen, Atlantic Brain and Spine. 

                  I have been treated at UVA, Hopkins, and am currently at Lombardi Cancer Center at Georgetown.  I was very happy with Hopkins, but at the time Dr. Lipson (Hopkins) wanted me to try Pembrolizumab and Hopkins didn't have it while Georgetown did. He referred me to Georgetown and I now see Dr. Michael Atkins. I really like him too!

                  Good luck to you!  Hope and faith!

                  Terie

                  • February 21, 2016 at 3:29 am
                  tschmith
                  Participant

                    I thought I had a concussion and went to the emergency room.  A CT scan was performed.  A mass presenting as cancer was found in my brain.  I was transported to Inova Fairfax and two days later the tumor was removed by Dr. Ben Nguyen of Atantic Brain and Spine.  Steretactic Radio Surgery followed.  This was in February of 2013 and while Melanoma has to other parts of my body, it has yet to return to my brain.  I really liked Dr. Nguyen. I also liked Dr. Jeffrey Mai.  He is also at Inova Fairfax.  Dr. Jae Lim operated on my spine (yes, I've been a mess but am still here!) and he was very good too!!! Dr. Lim is in the same practice as Dr. Nguyen, Atlantic Brain and Spine. 

                    I have been treated at UVA, Hopkins, and am currently at Lombardi Cancer Center at Georgetown.  I was very happy with Hopkins, but at the time Dr. Lipson (Hopkins) wanted me to try Pembrolizumab and Hopkins didn't have it while Georgetown did. He referred me to Georgetown and I now see Dr. Michael Atkins. I really like him too!

                    Good luck to you!  Hope and faith!

                    Terie

                  • February 19, 2016 at 5:45 pm
                  Eileensulliv
                  Participant

                    Hi Gwen, I am so sorry you are going through all of this. I do not have any help with a neurologist, but I can tell you I receive excellent care at Johns Hopkins. I sent you a message through your profile, but I don't seem to have any success with that feature here. I hope you receive it! I am saying some prayers for you, that you may receive the help and treatment you need!

                Viewing 2 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