Our families experience with Zelboraf, blood brain barrier

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  • Post
    • June 16, 2012 at 5:14 am
    mcarter12345
    Participant

      I hope this will help others. My dad was diagnosed with melanoma 6 years ago. Stage 4 3 years ago. Multiple surgeries…biggest was the lung 3 years ago. it was removed…very painful for my dad but he's a fighter.  It hit the nervous system 8 months ago, PET scan showed it along the spinal column and in the fluid around his brain. Sorry for the lack of specifiics…I am not a doctor.  the dcotors gave him 2 months. From what I know Zelboraf isn't supposed to cross hte blood brain barrier, but he tried it anyway.

      I hope this will help others. My dad was diagnosed with melanoma 6 years ago. Stage 4 3 years ago. Multiple surgeries…biggest was the lung 3 years ago. it was removed…very painful for my dad but he's a fighter.  It hit the nervous system 8 months ago, PET scan showed it along the spinal column and in the fluid around his brain. Sorry for the lack of specifiics…I am not a doctor.  the dcotors gave him 2 months. From what I know Zelboraf isn't supposed to cross hte blood brain barrier, but he tried it anyway. He had radiation around the head followed by taking the Zelboraf. Next scan showed the cancer had practically disapeared. Doctors were amazed. Side effect were bad, he had every one on the package insert. Just as he was about to stop the Zelboraf becuase the side effect were too much it quit working…symptoms were back. Confusion, headace, backace, etc. He's now on steroids to relieve the swelling in the brain and under hospice care. It's a great drug, bought time…maybe enough for him to see my son born. Worth the side effects? I don't know, only the person who has to do it can decide. I'll try to answer questions anyone has if you post or email me mcarter12345@hotmail.com.

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    • Replies
        • June 16, 2012 at 9:52 pm
        Tim–MRF
        Guest

          I am sorry to hear that your dad's tumors have stopped responding to Zelboraf, though very pleased that it worked for a while.

          Fortunately, we are seeing that BRAF inhibitors, including Zelboraf, do have impact on brain turmors.  This something of a surprise, but is very encouraging.  Now we need to find ways to get these drugs to work longer.

          I know that the company making Zelboraf has a trial for people who have stopped responding to the drug.  The trial combines Zelboraf with a MEK inhibitor.  I don't know, though, if you can be on the trial with brain mets.  MIght be worth exploring.

          Tim–MRF

            • June 16, 2012 at 10:08 pm
            mcarter12345
            Participant

              Tim, thank you for the information. The oncologist did not mention this trial, but definitley worth asking about. As you say, I don't know if he would be eligible but we'll check into it. At any rate I'm glad to hear they are continuing to develop new tools. Thanks again!

               

              Matt

              • June 17, 2012 at 10:22 pm
              Eileen L
              Participant

                Matt, I am currently on the trial that Tim mentioned. For those who have taken Zelboraf in the past and it has stopped working I believe they are put on the MEK inhibitor only, while those of us who are Zelboraf naive get both drugs. Here is a link to the info on the trial:

                http://clinicaltrials.gov/show/NCT01271803

                Please contact me at topocurls@aol.com if I can be of help.

                Eileen L

                • June 17, 2012 at 10:22 pm
                Eileen L
                Participant

                  Matt, I am currently on the trial that Tim mentioned. For those who have taken Zelboraf in the past and it has stopped working I believe they are put on the MEK inhibitor only, while those of us who are Zelboraf naive get both drugs. Here is a link to the info on the trial:

                  http://clinicaltrials.gov/show/NCT01271803

                  Please contact me at topocurls@aol.com if I can be of help.

                  Eileen L

                  • June 17, 2012 at 10:22 pm
                  Eileen L
                  Participant

                    Matt, I am currently on the trial that Tim mentioned. For those who have taken Zelboraf in the past and it has stopped working I believe they are put on the MEK inhibitor only, while those of us who are Zelboraf naive get both drugs. Here is a link to the info on the trial:

                    http://clinicaltrials.gov/show/NCT01271803

                    Please contact me at topocurls@aol.com if I can be of help.

                    Eileen L

                    • June 16, 2012 at 10:08 pm
                    mcarter12345
                    Participant

                      Tim, thank you for the information. The oncologist did not mention this trial, but definitley worth asking about. As you say, I don't know if he would be eligible but we'll check into it. At any rate I'm glad to hear they are continuing to develop new tools. Thanks again!

                       

                      Matt

                      • June 16, 2012 at 10:08 pm
                      mcarter12345
                      Participant

                        Tim, thank you for the information. The oncologist did not mention this trial, but definitley worth asking about. As you say, I don't know if he would be eligible but we'll check into it. At any rate I'm glad to hear they are continuing to develop new tools. Thanks again!

                         

                        Matt

                      • June 16, 2012 at 9:52 pm
                      Tim–MRF
                      Guest

                        I am sorry to hear that your dad's tumors have stopped responding to Zelboraf, though very pleased that it worked for a while.

                        Fortunately, we are seeing that BRAF inhibitors, including Zelboraf, do have impact on brain turmors.  This something of a surprise, but is very encouraging.  Now we need to find ways to get these drugs to work longer.

                        I know that the company making Zelboraf has a trial for people who have stopped responding to the drug.  The trial combines Zelboraf with a MEK inhibitor.  I don't know, though, if you can be on the trial with brain mets.  MIght be worth exploring.

                        Tim–MRF

                        • June 16, 2012 at 9:52 pm
                        Tim–MRF
                        Guest

                          I am sorry to hear that your dad's tumors have stopped responding to Zelboraf, though very pleased that it worked for a while.

                          Fortunately, we are seeing that BRAF inhibitors, including Zelboraf, do have impact on brain turmors.  This something of a surprise, but is very encouraging.  Now we need to find ways to get these drugs to work longer.

                          I know that the company making Zelboraf has a trial for people who have stopped responding to the drug.  The trial combines Zelboraf with a MEK inhibitor.  I don't know, though, if you can be on the trial with brain mets.  MIght be worth exploring.

                          Tim–MRF

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