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Need some positive stories – stage 4
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Need some positive stories – stage 4

› Forums › General Melanoma Community › Need some positive stories – stage 4

  • Post
    • February 26, 2014 at 10:57 am
    starletwoman2007
    Participant

      Hi 

      I was diagnosed with stage 4 mm about a month ago. I was told that the mm was mainly in my liver, stomach and that i had multiple tumours scattered over my brain. Becuase i was tested for braf positive i was put onto vem straight away. I went to the hospital and was told bcause the mm was scattered in my brain that i was unable to have gamma knife treatment, and instead would need whole brain radiation, but they were holding off doing this until it was needed. Therefore, i was wondering whether anyone could give me any positive stories where vem has worked for them and helped with their brain mets. Also are there any surviovurs out there who have not had any surgery to remove mm and that the drugs have worked for them?

      Thanks

      p.s sorry just feeling really down at the mo and just need to hear positive things

    Viewing 5 reply threads
    • Replies
        • February 26, 2014 at 4:47 pm
        kylez
        Participant

          "Second opinion" is the main thing I would suggest. Sorry you're feeling down, and are in this situation. A good second opinion may help a lot, whatever the second opinion ends up saying. May agree with your docs, or may have feel more strongly about an alternative like SRS like Gamma Knife, CyberKnife and other beam systems. I know some others here have had success with WBR and I understand it's the best choice for some situations. A second opinion may or may not agree with your current doctors but either way that's why I would seek one. 

          Not sure where to go for a second opinion? Maybe check Top Ranked Hospitals for Neurology and Neurosurgery for a location near you. Or one of the cancer centers listed under the "Understanding Melanoma" menu above, under "Resource Library", click on "Treatment Center Finder". Even better, a facility that's on both lists. If you're already seen at one of those places, maybe try another if you're up for it, to triangulate your treatment plan. 

          Also, one thing you can probably check out more quickly is this Radiation Treatment for  Brain Metastases 1-hour webinar at another site. It talks about treating many brain mets with Gamma Knife. Again, don't know if that fits your situation. For my part I had 3 bigger mets resected in two surgeries, plus 1 smaller treated by CyberKnife and 2 by Gamma Knife, those events in 2010-11. Others here have had many (greater than 10) smaller brain mets treated in a single session with one of the SRS techniques.
           
          Others here can speak about treatments like Vem with brain mets. I recently saw a prominent melanoma doctor speak about the newly approved combination of Tafinlar and Mekinist (BRAF + MEK therapy) and said he would choose that over single agent BRAF monotherapy, like Vem alone, every time simply because it's a combo therapy. That may be worth checking with your docs, and with a second opinion doc.
           
          Hope the best for your treatments and that you find some relief soon.
            • February 27, 2014 at 4:05 am
            Patina
            Participant

              Hi,

              My Mom had a similar issue and is BRAF and PD-1 Positive. She was diagnosed in early November of last year with tumors on her scalp, neck, lung, liver, kidney…  The radiologist completely MISSED the brain tumors and it was the third doctor who looked at her scans that discovered that she had brain cancer too!  – Dr. Peter Bosaberg in Santa Monica, CA – Great guy! 

              My Mother had 3 brain lesions in November and by December, when she had Gamma Knife Radiation, she had 9.  She went on Yervoy (immunotherapy) 4 days AFTER Gamma Knife Radiation.  Yervoy does NOT pass the blood brain barrier, but DOES stimulate T-Cells which are in the brain… There is some evidence that Yervoy benefits those with brain mets. So, take a look at this now and see if others would take you OFF vem now and use this as a last resort.  – I don't know everything you know and this is based on information I received about my Mom's situation…

              My Mother has done VERY well with Yervoy, but did have a set back with Colitis and a fungal infection in her mouth with thrush too boo!   The tumors on her scalp and neck are almost gone and the rest is pretty much stable, including the brain mets.  She has done so well that there is great hope that she may be one of the lucky few who show No Evidence of Disease after treatment.  – The BIG thing for us to watch is the brain right now as the other tumors are shrinking at a fast pace…  -She has 2 more Yervoy infusion to go.  (Delay due to colitis…) 

              If I were you I'd get a second opinion on this.  Have an experienced melanoma expert look at your PET/MRI's… and see what they would recommend and get to a specialist in Gamma Knife Radiation to review everything too.  

              Good Luck! 

              • February 27, 2014 at 7:20 pm
              NursePhyllis
              Participant

                If your mom is still receiving Yervoy she should check out the new patient support program for Yervoy patients at https://yervoyyesprogram.com.  It's free and they will send out a treatment diary, care guide, after treatment guide and give you access to a 24 hr nurse call line. 

                • February 27, 2014 at 7:20 pm
                NursePhyllis
                Participant

                  If your mom is still receiving Yervoy she should check out the new patient support program for Yervoy patients at https://yervoyyesprogram.com.  It's free and they will send out a treatment diary, care guide, after treatment guide and give you access to a 24 hr nurse call line. 

                  • February 27, 2014 at 7:20 pm
                  NursePhyllis
                  Participant

                    If your mom is still receiving Yervoy she should check out the new patient support program for Yervoy patients at https://yervoyyesprogram.com.  It's free and they will send out a treatment diary, care guide, after treatment guide and give you access to a 24 hr nurse call line. 

                    • February 27, 2014 at 4:05 am
                    Patina
                    Participant

                      Hi,

                      My Mom had a similar issue and is BRAF and PD-1 Positive. She was diagnosed in early November of last year with tumors on her scalp, neck, lung, liver, kidney…  The radiologist completely MISSED the brain tumors and it was the third doctor who looked at her scans that discovered that she had brain cancer too!  – Dr. Peter Bosaberg in Santa Monica, CA – Great guy! 

                      My Mother had 3 brain lesions in November and by December, when she had Gamma Knife Radiation, she had 9.  She went on Yervoy (immunotherapy) 4 days AFTER Gamma Knife Radiation.  Yervoy does NOT pass the blood brain barrier, but DOES stimulate T-Cells which are in the brain… There is some evidence that Yervoy benefits those with brain mets. So, take a look at this now and see if others would take you OFF vem now and use this as a last resort.  – I don't know everything you know and this is based on information I received about my Mom's situation…

                      My Mother has done VERY well with Yervoy, but did have a set back with Colitis and a fungal infection in her mouth with thrush too boo!   The tumors on her scalp and neck are almost gone and the rest is pretty much stable, including the brain mets.  She has done so well that there is great hope that she may be one of the lucky few who show No Evidence of Disease after treatment.  – The BIG thing for us to watch is the brain right now as the other tumors are shrinking at a fast pace…  -She has 2 more Yervoy infusion to go.  (Delay due to colitis…) 

                      If I were you I'd get a second opinion on this.  Have an experienced melanoma expert look at your PET/MRI's… and see what they would recommend and get to a specialist in Gamma Knife Radiation to review everything too.  

                      Good Luck! 

                      • February 27, 2014 at 4:05 am
                      Patina
                      Participant

                        Hi,

                        My Mom had a similar issue and is BRAF and PD-1 Positive. She was diagnosed in early November of last year with tumors on her scalp, neck, lung, liver, kidney…  The radiologist completely MISSED the brain tumors and it was the third doctor who looked at her scans that discovered that she had brain cancer too!  – Dr. Peter Bosaberg in Santa Monica, CA – Great guy! 

                        My Mother had 3 brain lesions in November and by December, when she had Gamma Knife Radiation, she had 9.  She went on Yervoy (immunotherapy) 4 days AFTER Gamma Knife Radiation.  Yervoy does NOT pass the blood brain barrier, but DOES stimulate T-Cells which are in the brain… There is some evidence that Yervoy benefits those with brain mets. So, take a look at this now and see if others would take you OFF vem now and use this as a last resort.  – I don't know everything you know and this is based on information I received about my Mom's situation…

                        My Mother has done VERY well with Yervoy, but did have a set back with Colitis and a fungal infection in her mouth with thrush too boo!   The tumors on her scalp and neck are almost gone and the rest is pretty much stable, including the brain mets.  She has done so well that there is great hope that she may be one of the lucky few who show No Evidence of Disease after treatment.  – The BIG thing for us to watch is the brain right now as the other tumors are shrinking at a fast pace…  -She has 2 more Yervoy infusion to go.  (Delay due to colitis…) 

                        If I were you I'd get a second opinion on this.  Have an experienced melanoma expert look at your PET/MRI's… and see what they would recommend and get to a specialist in Gamma Knife Radiation to review everything too.  

                        Good Luck! 

                      • February 26, 2014 at 4:47 pm
                      kylez
                      Participant

                        "Second opinion" is the main thing I would suggest. Sorry you're feeling down, and are in this situation. A good second opinion may help a lot, whatever the second opinion ends up saying. May agree with your docs, or may have feel more strongly about an alternative like SRS like Gamma Knife, CyberKnife and other beam systems. I know some others here have had success with WBR and I understand it's the best choice for some situations. A second opinion may or may not agree with your current doctors but either way that's why I would seek one. 

                        Not sure where to go for a second opinion? Maybe check Top Ranked Hospitals for Neurology and Neurosurgery for a location near you. Or one of the cancer centers listed under the "Understanding Melanoma" menu above, under "Resource Library", click on "Treatment Center Finder". Even better, a facility that's on both lists. If you're already seen at one of those places, maybe try another if you're up for it, to triangulate your treatment plan. 

                        Also, one thing you can probably check out more quickly is this Radiation Treatment for  Brain Metastases 1-hour webinar at another site. It talks about treating many brain mets with Gamma Knife. Again, don't know if that fits your situation. For my part I had 3 bigger mets resected in two surgeries, plus 1 smaller treated by CyberKnife and 2 by Gamma Knife, those events in 2010-11. Others here have had many (greater than 10) smaller brain mets treated in a single session with one of the SRS techniques.
                         
                        Others here can speak about treatments like Vem with brain mets. I recently saw a prominent melanoma doctor speak about the newly approved combination of Tafinlar and Mekinist (BRAF + MEK therapy) and said he would choose that over single agent BRAF monotherapy, like Vem alone, every time simply because it's a combo therapy. That may be worth checking with your docs, and with a second opinion doc.
                         
                        Hope the best for your treatments and that you find some relief soon.
                        • February 26, 2014 at 4:47 pm
                        kylez
                        Participant

                          "Second opinion" is the main thing I would suggest. Sorry you're feeling down, and are in this situation. A good second opinion may help a lot, whatever the second opinion ends up saying. May agree with your docs, or may have feel more strongly about an alternative like SRS like Gamma Knife, CyberKnife and other beam systems. I know some others here have had success with WBR and I understand it's the best choice for some situations. A second opinion may or may not agree with your current doctors but either way that's why I would seek one. 

                          Not sure where to go for a second opinion? Maybe check Top Ranked Hospitals for Neurology and Neurosurgery for a location near you. Or one of the cancer centers listed under the "Understanding Melanoma" menu above, under "Resource Library", click on "Treatment Center Finder". Even better, a facility that's on both lists. If you're already seen at one of those places, maybe try another if you're up for it, to triangulate your treatment plan. 

                          Also, one thing you can probably check out more quickly is this Radiation Treatment for  Brain Metastases 1-hour webinar at another site. It talks about treating many brain mets with Gamma Knife. Again, don't know if that fits your situation. For my part I had 3 bigger mets resected in two surgeries, plus 1 smaller treated by CyberKnife and 2 by Gamma Knife, those events in 2010-11. Others here have had many (greater than 10) smaller brain mets treated in a single session with one of the SRS techniques.
                           
                          Others here can speak about treatments like Vem with brain mets. I recently saw a prominent melanoma doctor speak about the newly approved combination of Tafinlar and Mekinist (BRAF + MEK therapy) and said he would choose that over single agent BRAF monotherapy, like Vem alone, every time simply because it's a combo therapy. That may be worth checking with your docs, and with a second opinion doc.
                           
                          Hope the best for your treatments and that you find some relief soon.
                          • February 28, 2014 at 1:11 am
                          SarahW
                          Participant

                            My husband is on the Tafinlar and Mekinist combo. He had stereotactic brain radiation for 8 brain tumors while on Vemurafenib and was then switched to Tafinlar Mekinist combo to see if it would permeate brain better. Two sets of good brain MRIs with no new tumors since switching drugs.

                            • February 28, 2014 at 1:11 am
                            SarahW
                            Participant

                              My husband is on the Tafinlar and Mekinist combo. He had stereotactic brain radiation for 8 brain tumors while on Vemurafenib and was then switched to Tafinlar Mekinist combo to see if it would permeate brain better. Two sets of good brain MRIs with no new tumors since switching drugs.

                              • February 28, 2014 at 1:11 am
                              SarahW
                              Participant

                                My husband is on the Tafinlar and Mekinist combo. He had stereotactic brain radiation for 8 brain tumors while on Vemurafenib and was then switched to Tafinlar Mekinist combo to see if it would permeate brain better. Two sets of good brain MRIs with no new tumors since switching drugs.

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