Leptomeningeal Metastases and Keytruda

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  • Post
    • December 12, 2014 at 8:36 pm
    MinPin
    Participant

      Has anyone had success on Keytruda even after being diagonised with leptomeningeal metastases/ spread of melanoma?  My loved one is to start Keytruda on Monday 12/15.  Wondering if it is going to help the LM?  Thank you for any information.

    Viewing 11 reply threads
    • Replies
        • December 15, 2014 at 4:56 pm
        arthurjedi007
        Participant

          Woah. I think I remember seeing a post about this quite awhile back but I just did a search on this site and nothing came up.

          From what I googled that is melanoma that has spread to the lining of the brain and spinal cord.

          I could be remembering wrong but from the post I remember that is a fairly rare type of melanoma that is also rather aggresive. At the time of that post there was only one doctor in the nation that specialized in it. He was at MD Anderson and has since retired. He had a special treatment he did for it.

          I hope I'm remembering wrong but since no one else has replied yet I figured I should speak up with what little I think I remember.

          So um yeah Keytruda can be great. It is what I'm on. I get my 11th dose tomorrow. But if I were you I would call MD Anderson and see if they can shed some light on that type of melanoma. Sorry if I'm scaring you but I'm almost positive I'm remembering that post right granted I do have at least 2 tumors pressing on my brain and the post was many months ago.

          Artie

           

          • December 15, 2014 at 4:56 pm
          arthurjedi007
          Participant

            Woah. I think I remember seeing a post about this quite awhile back but I just did a search on this site and nothing came up.

            From what I googled that is melanoma that has spread to the lining of the brain and spinal cord.

            I could be remembering wrong but from the post I remember that is a fairly rare type of melanoma that is also rather aggresive. At the time of that post there was only one doctor in the nation that specialized in it. He was at MD Anderson and has since retired. He had a special treatment he did for it.

            I hope I'm remembering wrong but since no one else has replied yet I figured I should speak up with what little I think I remember.

            So um yeah Keytruda can be great. It is what I'm on. I get my 11th dose tomorrow. But if I were you I would call MD Anderson and see if they can shed some light on that type of melanoma. Sorry if I'm scaring you but I'm almost positive I'm remembering that post right granted I do have at least 2 tumors pressing on my brain and the post was many months ago.

            Artie

             

            • December 15, 2014 at 4:56 pm
            arthurjedi007
            Participant

              Woah. I think I remember seeing a post about this quite awhile back but I just did a search on this site and nothing came up.

              From what I googled that is melanoma that has spread to the lining of the brain and spinal cord.

              I could be remembering wrong but from the post I remember that is a fairly rare type of melanoma that is also rather aggresive. At the time of that post there was only one doctor in the nation that specialized in it. He was at MD Anderson and has since retired. He had a special treatment he did for it.

              I hope I'm remembering wrong but since no one else has replied yet I figured I should speak up with what little I think I remember.

              So um yeah Keytruda can be great. It is what I'm on. I get my 11th dose tomorrow. But if I were you I would call MD Anderson and see if they can shed some light on that type of melanoma. Sorry if I'm scaring you but I'm almost positive I'm remembering that post right granted I do have at least 2 tumors pressing on my brain and the post was many months ago.

              Artie

               

              • December 16, 2014 at 12:10 am
              kylez
              Participant

                Artie, the doctor you're thinking of is Dr. Papadopoulos at MD Anderson. It's said he's retired, but I saw someone posted an oncologist (think she's a woman) who's now taking the lead on those cases there. The special treatment mentioned is, I think, intrathecal IL-2. 

                • December 16, 2014 at 12:10 am
                kylez
                Participant

                  Artie, the doctor you're thinking of is Dr. Papadopoulos at MD Anderson. It's said he's retired, but I saw someone posted an oncologist (think she's a woman) who's now taking the lead on those cases there. The special treatment mentioned is, I think, intrathecal IL-2. 

                  • December 16, 2014 at 12:10 am
                  kylez
                  Participant

                    Artie, the doctor you're thinking of is Dr. Papadopoulos at MD Anderson. It's said he's retired, but I saw someone posted an oncologist (think she's a woman) who's now taking the lead on those cases there. The special treatment mentioned is, I think, intrathecal IL-2. 

                    • December 16, 2014 at 2:31 am
                    BrianP
                    Participant

                      Art,

                      You are probably thinking of hannahcopeland1. I recommend the anonymous poster do a search for her and read some of her post. The last post from her were pretty good. Hope that is still the case.

                      Brian

                      • December 16, 2014 at 2:31 am
                      BrianP
                      Participant

                        Art,

                        You are probably thinking of hannahcopeland1. I recommend the anonymous poster do a search for her and read some of her post. The last post from her were pretty good. Hope that is still the case.

                        Brian

                        • December 16, 2014 at 2:31 am
                        BrianP
                        Participant

                          Art,

                          You are probably thinking of hannahcopeland1. I recommend the anonymous poster do a search for her and read some of her post. The last post from her were pretty good. Hope that is still the case.

                          Brian

                          • December 17, 2014 at 1:49 am
                          MinPin
                          Participant

                            Thank you all for responding I will check into MD Anderson.  Yes, from what I have been able to find about LM it is aggressive and the prognosis isn't very good, 10 weeks I read in one place.  that's why I was wondering if anyone had it and had Keytruda.  The one thing I read they do for LM is a reservoir in the skull that delivers treatment right to the spinal fluid.  So far has had WBR and spinal radiation to try to slow it down.  Maybe give Keytruda a chance to work.

                            best wishes to you all!  Thank you again.

                            • December 17, 2014 at 1:49 am
                            MinPin
                            Participant

                              Thank you all for responding I will check into MD Anderson.  Yes, from what I have been able to find about LM it is aggressive and the prognosis isn't very good, 10 weeks I read in one place.  that's why I was wondering if anyone had it and had Keytruda.  The one thing I read they do for LM is a reservoir in the skull that delivers treatment right to the spinal fluid.  So far has had WBR and spinal radiation to try to slow it down.  Maybe give Keytruda a chance to work.

                              best wishes to you all!  Thank you again.

                              • December 17, 2014 at 1:49 am
                              MinPin
                              Participant

                                Thank you all for responding I will check into MD Anderson.  Yes, from what I have been able to find about LM it is aggressive and the prognosis isn't very good, 10 weeks I read in one place.  that's why I was wondering if anyone had it and had Keytruda.  The one thing I read they do for LM is a reservoir in the skull that delivers treatment right to the spinal fluid.  So far has had WBR and spinal radiation to try to slow it down.  Maybe give Keytruda a chance to work.

                                best wishes to you all!  Thank you again.

                                  • June 29, 2015 at 3:29 pm
                                  Amya
                                  Participant
                                    Hi,
                                    I was wondering if you decided to try Keytruda? I have a dear friend who started in May. She was dx in April w LM . She’s having many neurological side effects from the disease. I’m interested in yours, or anyone’s journey. She is suffering from confusion, unsteady gait, inability to verbalize thoughts, nausea, vomiting, headaches, pressure with the eyes and lethargic. This is getting worse and she is only on her 2nd infusion. The Dr.s say it may get worse before it gets better and they will not know if it is working until the 4th month. Any information would be helpful.

                                    Thank you!

                                    • June 29, 2015 at 3:29 pm
                                    Amya
                                    Participant
                                      Hi,
                                      I was wondering if you decided to try Keytruda? I have a dear friend who started in May. She was dx in April w LM . She’s having many neurological side effects from the disease. I’m interested in yours, or anyone’s journey. She is suffering from confusion, unsteady gait, inability to verbalize thoughts, nausea, vomiting, headaches, pressure with the eyes and lethargic. This is getting worse and she is only on her 2nd infusion. The Dr.s say it may get worse before it gets better and they will not know if it is working until the 4th month. Any information would be helpful.

                                      Thank you!

                                      • June 29, 2015 at 3:29 pm
                                      Amya
                                      Participant
                                        Hi,
                                        I was wondering if you decided to try Keytruda? I have a dear friend who started in May. She was dx in April w LM . She’s having many neurological side effects from the disease. I’m interested in yours, or anyone’s journey. She is suffering from confusion, unsteady gait, inability to verbalize thoughts, nausea, vomiting, headaches, pressure with the eyes and lethargic. This is getting worse and she is only on her 2nd infusion. The Dr.s say it may get worse before it gets better and they will not know if it is working until the 4th month. Any information would be helpful.

                                        Thank you!

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