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Now have 15 brain tumors and starting Keytruda

Forums General Melanoma Community Now have 15 brain tumors and starting Keytruda

  • Post
    Kdw2012
    Participant

      I suffered two seizures on February 22. I have completed Yervoy February 5 they believe the Yervoy may have caused a flare of these tumors. These brain tumors have all occurred since November. I am now going to be starting Keytruda on Thursday March 5. 

      Has anyone else had similar issues and if so what kind of success have you had with Keytruda and how quickly?

      Kim Wright

    Viewing 8 reply threads
    • Replies
        arthurjedi007
        Participant

          Yes keytruda can activate your tccells and they can go into the brain to get rid of the tumors. I assume you have also explored the radiation option for brain Mets? If not you should get them radiated if possible I would think. This can be done while you are taking keytruda. Just no radiation on the day you get the keytruda dose but the day before and after and all the other days is fine.

          Also yesterday Brian posted PAC1 which is a brand new med just starting trials they believe can help with brain mets. But it is new so who knows but from what they've seen in animals I'm really hoping for this med to work great.

          Artie

          arthurjedi007
          Participant

            Yes keytruda can activate your tccells and they can go into the brain to get rid of the tumors. I assume you have also explored the radiation option for brain Mets? If not you should get them radiated if possible I would think. This can be done while you are taking keytruda. Just no radiation on the day you get the keytruda dose but the day before and after and all the other days is fine.

            Also yesterday Brian posted PAC1 which is a brand new med just starting trials they believe can help with brain mets. But it is new so who knows but from what they've seen in animals I'm really hoping for this med to work great.

            Artie

              Kdw2012
              Participant

                Yes I have a had whole brain radiation

                Kdw2012
                Participant

                  Yes I have a had whole brain radiation

                  Kdw2012
                  Participant

                    Yes I have a had whole brain radiation

                  arthurjedi007
                  Participant

                    Yes keytruda can activate your tccells and they can go into the brain to get rid of the tumors. I assume you have also explored the radiation option for brain Mets? If not you should get them radiated if possible I would think. This can be done while you are taking keytruda. Just no radiation on the day you get the keytruda dose but the day before and after and all the other days is fine.

                    Also yesterday Brian posted PAC1 which is a brand new med just starting trials they believe can help with brain mets. But it is new so who knows but from what they've seen in animals I'm really hoping for this med to work great.

                    Artie

                    Bubbles
                    Participant

                      Sorry you are dealing with all this, Kim.  Immunotherapy can sometimes cause inflammation before it gets rid of tumors, so perhaps that is what your docs are referring to.  However, as Artie alluded…we have also learned that immunotherapy (sometimes when combined with radiation like SRS) can help get rid of tumors in the brain.  More researchers are noting this in their data and more trials allowing patients with active brain mets are being started.  Here is a post that contains several different links addressing these points. 

                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/02/ipi-nivo-combo-and-radiation-for.html

                      Hope that helps.  I wish you my best.  Celeste

                      Bubbles
                      Participant

                        Sorry you are dealing with all this, Kim.  Immunotherapy can sometimes cause inflammation before it gets rid of tumors, so perhaps that is what your docs are referring to.  However, as Artie alluded…we have also learned that immunotherapy (sometimes when combined with radiation like SRS) can help get rid of tumors in the brain.  More researchers are noting this in their data and more trials allowing patients with active brain mets are being started.  Here is a post that contains several different links addressing these points. 

                        http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/02/ipi-nivo-combo-and-radiation-for.html

                        Hope that helps.  I wish you my best.  Celeste

                        Bubbles
                        Participant

                          Sorry you are dealing with all this, Kim.  Immunotherapy can sometimes cause inflammation before it gets rid of tumors, so perhaps that is what your docs are referring to.  However, as Artie alluded…we have also learned that immunotherapy (sometimes when combined with radiation like SRS) can help get rid of tumors in the brain.  More researchers are noting this in their data and more trials allowing patients with active brain mets are being started.  Here is a post that contains several different links addressing these points. 

                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/02/ipi-nivo-combo-and-radiation-for.html

                          Hope that helps.  I wish you my best.  Celeste

                          Patina
                          Participant

                            My Mother had 25 brain tumors treated with gamma knife radion. Whole Brain Radiation was never discussed. – I think the doctors felt WBRT was as beneficial long term compared to gamma knife radiation.

                            She had 8 treated (one missed) in by someone near Beverly Hills. 4 months+ later we had a emergency consult because a neuroncologist said my Mom had one new tumor but he wasn't advising gamma knife radiation. The emergency consult was with Dr. Eric Chang at USC in Los Angeles. He saw at least 5 in her prefrontal lobe. She was scheduled for gamma knife radiation the following week. They found and treated 17 the day of treatment. Again, not even a suggestion of WBRT.  

                            She started Yervoy 4 days after the first treatment in December (2013) and had her last infusion at the end of March (2014) about 3 weeks before the second gamma knife radation treatment.

                            It has been mentioned to us that Yervoy seems to work "last" on the brain. I am not sure if there is evidence on this, but the turmors my Mom had and elsewhere were gone or significanlty reduced but she had new growth after treatment with Yervoy, but no new growth since the sucessfull treatment by Dr. Chang and his team. – Some of this was due to the fact that one tumor was missed, but it can't explain all the rest.  

                            Since we discovered my Mom had brain cancer she had been taking  Cibdex, it is a natural source of cannabinoids. There is a article below that indicates this can be beneficial for brain cancer with gamma knife radiation. 

                             

                             

                            Read these studies:

                            http://www.elekta.com/press/9381f384-ff4a-4561-80c7-5175f5e0f381/study-finds-gamma-knife-radiosurgery-alone-yields-equal-survival-outcomes-for-patients-with-two-to-10-tumors.html

                            “The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.”

                            http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/

                            Study finds marijana drastically shrinks brain cancer

                            http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html?ir=Healthy+Living

                            Patina
                            Participant

                              My Mother had 25 brain tumors treated with gamma knife radion. Whole Brain Radiation was never discussed. – I think the doctors felt WBRT was as beneficial long term compared to gamma knife radiation.

                              She had 8 treated (one missed) in by someone near Beverly Hills. 4 months+ later we had a emergency consult because a neuroncologist said my Mom had one new tumor but he wasn't advising gamma knife radiation. The emergency consult was with Dr. Eric Chang at USC in Los Angeles. He saw at least 5 in her prefrontal lobe. She was scheduled for gamma knife radiation the following week. They found and treated 17 the day of treatment. Again, not even a suggestion of WBRT.  

                              She started Yervoy 4 days after the first treatment in December (2013) and had her last infusion at the end of March (2014) about 3 weeks before the second gamma knife radation treatment.

                              It has been mentioned to us that Yervoy seems to work "last" on the brain. I am not sure if there is evidence on this, but the turmors my Mom had and elsewhere were gone or significanlty reduced but she had new growth after treatment with Yervoy, but no new growth since the sucessfull treatment by Dr. Chang and his team. – Some of this was due to the fact that one tumor was missed, but it can't explain all the rest.  

                              Since we discovered my Mom had brain cancer she had been taking  Cibdex, it is a natural source of cannabinoids. There is a article below that indicates this can be beneficial for brain cancer with gamma knife radiation. 

                               

                               

                              Read these studies:

                              http://www.elekta.com/press/9381f384-ff4a-4561-80c7-5175f5e0f381/study-finds-gamma-knife-radiosurgery-alone-yields-equal-survival-outcomes-for-patients-with-two-to-10-tumors.html

                              “The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.”

                              http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/

                              Study finds marijana drastically shrinks brain cancer

                              http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html?ir=Healthy+Living

                              Patina
                              Participant

                                My Mother had 25 brain tumors treated with gamma knife radion. Whole Brain Radiation was never discussed. – I think the doctors felt WBRT was as beneficial long term compared to gamma knife radiation.

                                She had 8 treated (one missed) in by someone near Beverly Hills. 4 months+ later we had a emergency consult because a neuroncologist said my Mom had one new tumor but he wasn't advising gamma knife radiation. The emergency consult was with Dr. Eric Chang at USC in Los Angeles. He saw at least 5 in her prefrontal lobe. She was scheduled for gamma knife radiation the following week. They found and treated 17 the day of treatment. Again, not even a suggestion of WBRT.  

                                She started Yervoy 4 days after the first treatment in December (2013) and had her last infusion at the end of March (2014) about 3 weeks before the second gamma knife radation treatment.

                                It has been mentioned to us that Yervoy seems to work "last" on the brain. I am not sure if there is evidence on this, but the turmors my Mom had and elsewhere were gone or significanlty reduced but she had new growth after treatment with Yervoy, but no new growth since the sucessfull treatment by Dr. Chang and his team. – Some of this was due to the fact that one tumor was missed, but it can't explain all the rest.  

                                Since we discovered my Mom had brain cancer she had been taking  Cibdex, it is a natural source of cannabinoids. There is a article below that indicates this can be beneficial for brain cancer with gamma knife radiation. 

                                 

                                 

                                Read these studies:

                                http://www.elekta.com/press/9381f384-ff4a-4561-80c7-5175f5e0f381/study-finds-gamma-knife-radiosurgery-alone-yields-equal-survival-outcomes-for-patients-with-two-to-10-tumors.html

                                “The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.”

                                http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/

                                Study finds marijana drastically shrinks brain cancer

                                http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html?ir=Healthy+Living

                                  Patina
                                  Participant

                                    There does not seem to be a way to edit a post and I want to clarify what I meant to post.

                                    I think the doctors felt that WBRT was NOT as beneficial for patients in the long term compared to gamma knife radiation.

                                    Patina
                                    Participant

                                      There does not seem to be a way to edit a post and I want to clarify what I meant to post.

                                      I think the doctors felt that WBRT was NOT as beneficial for patients in the long term compared to gamma knife radiation.

                                      Patina
                                      Participant

                                        There does not seem to be a way to edit a post and I want to clarify what I meant to post.

                                        I think the doctors felt that WBRT was NOT as beneficial for patients in the long term compared to gamma knife radiation.

                                        Kdw2012
                                        Participant

                                          My doctor is really pushing the medical marijuana and it's benefits. So I am looking into it.

                                          gamma knife was done after the first 3 tumors, then WBRT was done when 9 more showed up 6 weeks later. Now there is 3 new ones two weeks later.

                                          Kdw2012
                                          Participant

                                            My doctor is really pushing the medical marijuana and it's benefits. So I am looking into it.

                                            gamma knife was done after the first 3 tumors, then WBRT was done when 9 more showed up 6 weeks later. Now there is 3 new ones two weeks later.

                                            Kdw2012
                                            Participant

                                              My doctor is really pushing the medical marijuana and it's benefits. So I am looking into it.

                                              gamma knife was done after the first 3 tumors, then WBRT was done when 9 more showed up 6 weeks later. Now there is 3 new ones two weeks later.

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