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Confirmed Brain Mets

Forums General Melanoma Community Confirmed Brain Mets

  • Post
    keepthefaith11
    Participant
      So really bad news. My had had the MRI today even though they could not complete it due to him not cooperating. They were however able to see he has 13, yes, 13 brain mets of varying sizes…

      Please, someone give me some guidance..
      WHAT do we do now…

      Annie

    Viewing 14 reply threads
    • Replies
        jennunicorn
        Participant

          Dangit! I am so sorry. Not sure if flying back to the states would be possible or not in order to start treatment. You can check this list for international melanoma facilities: http://melanomainternational.org/web-resources/global-resources/#.V3qivPkrK00  

          I know others on here with more experience will have more advice for you.

          Keeping you and your family in my thoughts.

          jennunicorn
          Participant

            Dangit! I am so sorry. Not sure if flying back to the states would be possible or not in order to start treatment. You can check this list for international melanoma facilities: http://melanomainternational.org/web-resources/global-resources/#.V3qivPkrK00  

            I know others on here with more experience will have more advice for you.

            Keeping you and your family in my thoughts.

              keepthefaith11
              Participant
                Thank you Jenn. It means a lot. Trying to stay positive and hoping that the treatment will kick it’s rear! Thank you for the link. Amazingly enough, included in the listing for their country is exactly the hospital he is at. I am assuming that is good news that the website would have that exact Hospital on their list. Hopefully they will agree with my treatment plan.

                Annie

                keepthefaith11
                Participant
                  Thank you Jenn. It means a lot. Trying to stay positive and hoping that the treatment will kick it’s rear! Thank you for the link. Amazingly enough, included in the listing for their country is exactly the hospital he is at. I am assuming that is good news that the website would have that exact Hospital on their list. Hopefully they will agree with my treatment plan.

                  Annie

                  keepthefaith11
                  Participant
                    Am I wrong or does Dr. Luke argue that there is no abscopal effect???

                    http://www.medpagetoday.com/reading-room/asco/melanoma/57185

                    keepthefaith11
                    Participant
                      Am I wrong or does Dr. Luke argue that there is no abscopal effect???

                      http://www.medpagetoday.com/reading-room/asco/melanoma/57185

                      keepthefaith11
                      Participant
                        Am I wrong or does Dr. Luke argue that there is no abscopal effect???

                        http://www.medpagetoday.com/reading-room/asco/melanoma/57185

                        Polymath
                        Participant

                          Annie,

                          I think its the last paragraph causing the confusion.  The article supports the use of the combined therapy of radiation and immunotherapy.  Radiation alone is not a long-term solution.  You can destroy, or surgically remove a tumor, but you are going to have melanoma cells left behind. Only through a systemic immune response are we going to beat the beast.  The evidence is mounting that the abscopal effect is real, although like everything else, there is no guarantee of an individual response.  This is my understanding.

                          Gary

                           

                          Polymath
                          Participant

                            Annie,

                            I think its the last paragraph causing the confusion.  The article supports the use of the combined therapy of radiation and immunotherapy.  Radiation alone is not a long-term solution.  You can destroy, or surgically remove a tumor, but you are going to have melanoma cells left behind. Only through a systemic immune response are we going to beat the beast.  The evidence is mounting that the abscopal effect is real, although like everything else, there is no guarantee of an individual response.  This is my understanding.

                            Gary

                             

                            Polymath
                            Participant

                              Annie,

                              I think its the last paragraph causing the confusion.  The article supports the use of the combined therapy of radiation and immunotherapy.  Radiation alone is not a long-term solution.  You can destroy, or surgically remove a tumor, but you are going to have melanoma cells left behind. Only through a systemic immune response are we going to beat the beast.  The evidence is mounting that the abscopal effect is real, although like everything else, there is no guarantee of an individual response.  This is my understanding.

                              Gary

                               

                              keepthefaith11
                              Participant
                                Thank you for the clarification Gary. That sounds encouraging. It did read a little bit confusing.

                                Annie

                                keepthefaith11
                                Participant
                                  Thank you for the clarification Gary. That sounds encouraging. It did read a little bit confusing.

                                  Annie

                                  keepthefaith11
                                  Participant
                                    Thank you for the clarification Gary. That sounds encouraging. It did read a little bit confusing.

                                    Annie

                                    keepthefaith11
                                    Participant
                                      Thank you Jenn. It means a lot. Trying to stay positive and hoping that the treatment will kick it’s rear! Thank you for the link. Amazingly enough, included in the listing for their country is exactly the hospital he is at. I am assuming that is good news that the website would have that exact Hospital on their list. Hopefully they will agree with my treatment plan.

                                      Annie

                                    jennunicorn
                                    Participant

                                      Dangit! I am so sorry. Not sure if flying back to the states would be possible or not in order to start treatment. You can check this list for international melanoma facilities: http://melanomainternational.org/web-resources/global-resources/#.V3qivPkrK00  

                                      I know others on here with more experience will have more advice for you.

                                      Keeping you and your family in my thoughts.

                                      kylez
                                      Participant

                                        Hi Annie, it sounds like he won't be able to travel on an airplane for various reasons including needing an intravenous too sure seizure control. Is that right? If that is the case, it sounds like he'll need to get treated over there so he can be stable to fly back home.

                                        What happens for me at two completely different hospitals I was treated at, is they did a standard process for each medical Center, which is to convene a multi-disciplinary tumor board. It would consist of oncologists, neurosurgeons, and radiation oncologists, and probably radiologists.  They would together decide on what course of Crete meant to recommend. It might be radiation, a craniotomy, systemic treatment, or some combination of those. For that many frame mats, some kind of beam radiation, like gamma knife, would probably be part of the treatment mix.

                                        I think that's where things would be next for your dad. If he wants to get his team involved back home,  as a second opinion, maybe there is a way that can be done.  How it works to be an American getting treated in Europe, I don't know. But it sounds so far like he's getting the scans and other treatments that he needs so far. 

                                        kylez
                                        Participant

                                          Hi Annie, it sounds like he won't be able to travel on an airplane for various reasons including needing an intravenous too sure seizure control. Is that right? If that is the case, it sounds like he'll need to get treated over there so he can be stable to fly back home.

                                          What happens for me at two completely different hospitals I was treated at, is they did a standard process for each medical Center, which is to convene a multi-disciplinary tumor board. It would consist of oncologists, neurosurgeons, and radiation oncologists, and probably radiologists.  They would together decide on what course of Crete meant to recommend. It might be radiation, a craniotomy, systemic treatment, or some combination of those. For that many frame mats, some kind of beam radiation, like gamma knife, would probably be part of the treatment mix.

                                          I think that's where things would be next for your dad. If he wants to get his team involved back home,  as a second opinion, maybe there is a way that can be done.  How it works to be an American getting treated in Europe, I don't know. But it sounds so far like he's getting the scans and other treatments that he needs so far. 

                                          kylez
                                          Participant

                                            Hi Annie, it sounds like he won't be able to travel on an airplane for various reasons including needing an intravenous too sure seizure control. Is that right? If that is the case, it sounds like he'll need to get treated over there so he can be stable to fly back home.

                                            What happens for me at two completely different hospitals I was treated at, is they did a standard process for each medical Center, which is to convene a multi-disciplinary tumor board. It would consist of oncologists, neurosurgeons, and radiation oncologists, and probably radiologists.  They would together decide on what course of Crete meant to recommend. It might be radiation, a craniotomy, systemic treatment, or some combination of those. For that many frame mats, some kind of beam radiation, like gamma knife, would probably be part of the treatment mix.

                                            I think that's where things would be next for your dad. If he wants to get his team involved back home,  as a second opinion, maybe there is a way that can be done.  How it works to be an American getting treated in Europe, I don't know. But it sounds so far like he's getting the scans and other treatments that he needs so far. 

                                              kylez
                                              Participant

                                                "Crete meant" = treatment. "Frame mats" = brain mets.  Voice typing. 

                                                kylez
                                                Participant

                                                  "Crete meant" = treatment. "Frame mats" = brain mets.  Voice typing. 

                                                  kylez
                                                  Participant

                                                    "Crete meant" = treatment. "Frame mats" = brain mets.  Voice typing. 

                                                    keepthefaith11
                                                    Participant
                                                      Kyle, thank you. My family is actually from Europe. I am the one who move to America and my parents spend part of the Year here. So he is essentially home. Although they like it better here now.

                                                      I am pretty sure they are meeting today to discuss. I just hope they won’t start talking about full brain radiation since there are multiple Mets. I read that places like Yale still do gamma knife on multiple lesions. Even 20 lesions and Beyond. Is that correct?

                                                      Annie

                                                      keepthefaith11
                                                      Participant
                                                        Kyle, thank you. My family is actually from Europe. I am the one who move to America and my parents spend part of the Year here. So he is essentially home. Although they like it better here now.

                                                        I am pretty sure they are meeting today to discuss. I just hope they won’t start talking about full brain radiation since there are multiple Mets. I read that places like Yale still do gamma knife on multiple lesions. Even 20 lesions and Beyond. Is that correct?

                                                        Annie

                                                        keepthefaith11
                                                        Participant
                                                          Kyle, thank you. My family is actually from Europe. I am the one who move to America and my parents spend part of the Year here. So he is essentially home. Although they like it better here now.

                                                          I am pretty sure they are meeting today to discuss. I just hope they won’t start talking about full brain radiation since there are multiple Mets. I read that places like Yale still do gamma knife on multiple lesions. Even 20 lesions and Beyond. Is that correct?

                                                          Annie

                                                        Bubbles
                                                        Participant

                                                          So sorry, Annie.

                                                          I know this was the last news you wanted to hear.  I agree with all that the others have stated.  There are many studies regarding brain mets generally, radiation and the abscopal effect, and the synergy between systemic therapy and radiation…be it BRAFi or immunotherapy…and their positive effect on melanoma generally and brain mets specifically.  Just use the search bubble if you are interested…but you probably know all that.  It sounds like the folks caring for your dad are moving along in his care….hopefully they will have a treatment plan in place very soon.  Hang in there. Yours, c

                                                          Bubbles
                                                          Participant

                                                            So sorry, Annie.

                                                            I know this was the last news you wanted to hear.  I agree with all that the others have stated.  There are many studies regarding brain mets generally, radiation and the abscopal effect, and the synergy between systemic therapy and radiation…be it BRAFi or immunotherapy…and their positive effect on melanoma generally and brain mets specifically.  Just use the search bubble if you are interested…but you probably know all that.  It sounds like the folks caring for your dad are moving along in his care….hopefully they will have a treatment plan in place very soon.  Hang in there. Yours, c

                                                            Bubbles
                                                            Participant

                                                              So sorry, Annie.

                                                              I know this was the last news you wanted to hear.  I agree with all that the others have stated.  There are many studies regarding brain mets generally, radiation and the abscopal effect, and the synergy between systemic therapy and radiation…be it BRAFi or immunotherapy…and their positive effect on melanoma generally and brain mets specifically.  Just use the search bubble if you are interested…but you probably know all that.  It sounds like the folks caring for your dad are moving along in his care….hopefully they will have a treatment plan in place very soon.  Hang in there. Yours, c

                                                                keepthefaith11
                                                                Participant
                                                                  Celeste, thank you. I have read about the abscopal effect of radiation and immunotherapy. There also seem to be a strong correlation between better outcomes with combination radiation and BRAF drugs. I am assuming that radiation and immunotherapy is still the way to go right? When would the BRAF Inhibitors enter the picture?

                                                                  Also, is it true that braf positive people seem to have a much better response rate to radiation therapy? Thank you everyone for your help, you are invaluable!

                                                                  Annie

                                                                  keepthefaith11
                                                                  Participant
                                                                    Celeste, thank you. I have read about the abscopal effect of radiation and immunotherapy. There also seem to be a strong correlation between better outcomes with combination radiation and BRAF drugs. I am assuming that radiation and immunotherapy is still the way to go right? When would the BRAF Inhibitors enter the picture?

                                                                    Also, is it true that braf positive people seem to have a much better response rate to radiation therapy? Thank you everyone for your help, you are invaluable!

                                                                    Annie

                                                                    keepthefaith11
                                                                    Participant
                                                                      Celeste, thank you. I have read about the abscopal effect of radiation and immunotherapy. There also seem to be a strong correlation between better outcomes with combination radiation and BRAF drugs. I am assuming that radiation and immunotherapy is still the way to go right? When would the BRAF Inhibitors enter the picture?

                                                                      Also, is it true that braf positive people seem to have a much better response rate to radiation therapy? Thank you everyone for your help, you are invaluable!

                                                                      Annie

                                                                      Bubbles
                                                                      Participant

                                                                        Hi again Annie,

                                                                        I've never heard that folks that are BRAF positive do better with radiation than other folks.  Deciding to go with BRAFi vs immunotherapy first…is a bit of a crap shoot…as was discussed in my post "Choose your poison".  However, folks with a high tumor burder often use BRAFi to decrease the burden rapidly then switch to immunotherapy (as it works best with the lowest tumor burden possible) before resistance develops.  But…certainly…radiation…combined with either is statistically proven to be the best bet….as is SRS vs WBR.

                                                                        yours, c

                                                                        keepthefaith11
                                                                        Participant
                                                                          Celeste, thank you. What would be considered high tumor burden? Do you know if they can do surgery incase there are bigger tumors and then zap the smaller ones with SRS?

                                                                          Annie

                                                                          keepthefaith11
                                                                          Participant
                                                                            Celeste, thank you. What would be considered high tumor burden? Do you know if they can do surgery incase there are bigger tumors and then zap the smaller ones with SRS?

                                                                            Annie

                                                                            ed williams
                                                                            Participant

                                                                              Hi Annie, I am sure Celeste will give you some information but I thought I might give you a couple of good links about Melanoma and brain surgery and stereotatic treatments. Wishing you and your family the best!!!! Ed    https://www.youtube.com/watch?v=TIxCAo8xzj0

                                                                              https://www.youtube.com/watch?v=mnPN8YyfX_Y

                                                                              ed williams
                                                                              Participant

                                                                                Hi Annie, I am sure Celeste will give you some information but I thought I might give you a couple of good links about Melanoma and brain surgery and stereotatic treatments. Wishing you and your family the best!!!! Ed    https://www.youtube.com/watch?v=TIxCAo8xzj0

                                                                                https://www.youtube.com/watch?v=mnPN8YyfX_Y

                                                                                ed williams
                                                                                Participant

                                                                                  Hi Annie, I am sure Celeste will give you some information but I thought I might give you a couple of good links about Melanoma and brain surgery and stereotatic treatments. Wishing you and your family the best!!!! Ed    https://www.youtube.com/watch?v=TIxCAo8xzj0

                                                                                  https://www.youtube.com/watch?v=mnPN8YyfX_Y

                                                                                  keepthefaith11
                                                                                  Participant
                                                                                    Ed, thank you. Seems as though in my dad’s case, with high numer of mets, UCLA would not do SRS but rather full brain. Sound like he doesn’t give much hope to people with multiple leisons.
                                                                                    keepthefaith11
                                                                                    Participant
                                                                                      Ed, thank you. Seems as though in my dad’s case, with high numer of mets, UCLA would not do SRS but rather full brain. Sound like he doesn’t give much hope to people with multiple leisons.
                                                                                      keepthefaith11
                                                                                      Participant
                                                                                        Ed, thank you. Seems as though in my dad’s case, with high numer of mets, UCLA would not do SRS but rather full brain. Sound like he doesn’t give much hope to people with multiple leisons.
                                                                                        Bubbles
                                                                                        Participant

                                                                                          Hey Annie,

                                                                                          Ed's resources are good ones…as ever!!  "High" and "low" tumor burden are rather subjective with no absolute answers…unfortunately.  There are some studies that have looked at computing the combined volume of all the patient's tumors in order to obtain total tumor volume and created correlations between tumor volume and prognosis.  But, most oncologists make a basic judgement call as to whether tumor burden is categorized as high or low.  To the other point…yes…sometimes folks have surgical removal of some tumors AND SRS to others….within the same treatment phase/plan.  Hang tough.  c

                                                                                          Bubbles
                                                                                          Participant

                                                                                            Hey Annie,

                                                                                            Ed's resources are good ones…as ever!!  "High" and "low" tumor burden are rather subjective with no absolute answers…unfortunately.  There are some studies that have looked at computing the combined volume of all the patient's tumors in order to obtain total tumor volume and created correlations between tumor volume and prognosis.  But, most oncologists make a basic judgement call as to whether tumor burden is categorized as high or low.  To the other point…yes…sometimes folks have surgical removal of some tumors AND SRS to others….within the same treatment phase/plan.  Hang tough.  c

                                                                                            Bubbles
                                                                                            Participant

                                                                                              Hey Annie,

                                                                                              Ed's resources are good ones…as ever!!  "High" and "low" tumor burden are rather subjective with no absolute answers…unfortunately.  There are some studies that have looked at computing the combined volume of all the patient's tumors in order to obtain total tumor volume and created correlations between tumor volume and prognosis.  But, most oncologists make a basic judgement call as to whether tumor burden is categorized as high or low.  To the other point…yes…sometimes folks have surgical removal of some tumors AND SRS to others….within the same treatment phase/plan.  Hang tough.  c

                                                                                              keepthefaith11
                                                                                              Participant
                                                                                                Thank you Celeste. I am so afraid the treatment team will recommend full brain and not even consider SRS. Why would UCLA be so against it when places like YALE are doing it????
                                                                                                keepthefaith11
                                                                                                Participant
                                                                                                  Thank you Celeste. I am so afraid the treatment team will recommend full brain and not even consider SRS. Why would UCLA be so against it when places like YALE are doing it????
                                                                                                  keepthefaith11
                                                                                                  Participant
                                                                                                    Thank you Celeste. I am so afraid the treatment team will recommend full brain and not even consider SRS. Why would UCLA be so against it when places like YALE are doing it????
                                                                                                    keepthefaith11
                                                                                                    Participant
                                                                                                      Celeste, thank you. What would be considered high tumor burden? Do you know if they can do surgery incase there are bigger tumors and then zap the smaller ones with SRS?

                                                                                                      Annie

                                                                                                      Bubbles
                                                                                                      Participant

                                                                                                        Hi again Annie,

                                                                                                        I've never heard that folks that are BRAF positive do better with radiation than other folks.  Deciding to go with BRAFi vs immunotherapy first…is a bit of a crap shoot…as was discussed in my post "Choose your poison".  However, folks with a high tumor burder often use BRAFi to decrease the burden rapidly then switch to immunotherapy (as it works best with the lowest tumor burden possible) before resistance develops.  But…certainly…radiation…combined with either is statistically proven to be the best bet….as is SRS vs WBR.

                                                                                                        yours, c

                                                                                                        Bubbles
                                                                                                        Participant

                                                                                                          Hi again Annie,

                                                                                                          I've never heard that folks that are BRAF positive do better with radiation than other folks.  Deciding to go with BRAFi vs immunotherapy first…is a bit of a crap shoot…as was discussed in my post "Choose your poison".  However, folks with a high tumor burder often use BRAFi to decrease the burden rapidly then switch to immunotherapy (as it works best with the lowest tumor burden possible) before resistance develops.  But…certainly…radiation…combined with either is statistically proven to be the best bet….as is SRS vs WBR.

                                                                                                          yours, c

                                                                                                        Maria C
                                                                                                        Participant

                                                                                                          Annie, so sorry to hear about your dad's brain mets. I recently had a conversation on these boards with Eva, who also gets them 11-15 at a time – she inspired me and maybe her story will be helpful/hopeful to you & your dad as well:

                                                                                                          https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/quick-update-thursday#comment-95806

                                                                                                          Wishing your dad an excellent & progressive team & treatment plan!!

                                                                                                          Maria C
                                                                                                          Participant

                                                                                                            Annie, so sorry to hear about your dad's brain mets. I recently had a conversation on these boards with Eva, who also gets them 11-15 at a time – she inspired me and maybe her story will be helpful/hopeful to you & your dad as well:

                                                                                                            https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/quick-update-thursday#comment-95806

                                                                                                            Wishing your dad an excellent & progressive team & treatment plan!!

                                                                                                            Maria C
                                                                                                            Participant

                                                                                                              Annie, so sorry to hear about your dad's brain mets. I recently had a conversation on these boards with Eva, who also gets them 11-15 at a time – she inspired me and maybe her story will be helpful/hopeful to you & your dad as well:

                                                                                                              https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/quick-update-thursday#comment-95806

                                                                                                              Wishing your dad an excellent & progressive team & treatment plan!!

                                                                                                                keepthefaith11
                                                                                                                Participant
                                                                                                                  Thank you so much for sharing Maria. It certainly gives me hope to read those posts.

                                                                                                                  My dad is now awake and eating after sleeping for 2 straight days after the seziures. He is very confused and has no idea what has happened. Also he is having some issues with speech since the second run of seziures. They call it Postictal effect. Just so hard to see him like this.

                                                                                                                  Doctor was saying to my mom they have to wait for the swelling to go down before they start treatment. I am hoping the decision will be to do the Gamma radiation, even with so many mets.
                                                                                                                  Doctor was given a letter with my thoughts on treatment plan and my phone number.

                                                                                                                  He is on steriods for swelling.

                                                                                                                  Annie

                                                                                                                  keepthefaith11
                                                                                                                  Participant
                                                                                                                    Thank you so much for sharing Maria. It certainly gives me hope to read those posts.

                                                                                                                    My dad is now awake and eating after sleeping for 2 straight days after the seziures. He is very confused and has no idea what has happened. Also he is having some issues with speech since the second run of seziures. They call it Postictal effect. Just so hard to see him like this.

                                                                                                                    Doctor was saying to my mom they have to wait for the swelling to go down before they start treatment. I am hoping the decision will be to do the Gamma radiation, even with so many mets.
                                                                                                                    Doctor was given a letter with my thoughts on treatment plan and my phone number.

                                                                                                                    He is on steriods for swelling.

                                                                                                                    Annie

                                                                                                                    keepthefaith11
                                                                                                                    Participant
                                                                                                                      Thank you so much for sharing Maria. It certainly gives me hope to read those posts.

                                                                                                                      My dad is now awake and eating after sleeping for 2 straight days after the seziures. He is very confused and has no idea what has happened. Also he is having some issues with speech since the second run of seziures. They call it Postictal effect. Just so hard to see him like this.

                                                                                                                      Doctor was saying to my mom they have to wait for the swelling to go down before they start treatment. I am hoping the decision will be to do the Gamma radiation, even with so many mets.
                                                                                                                      Doctor was given a letter with my thoughts on treatment plan and my phone number.

                                                                                                                      He is on steriods for swelling.

                                                                                                                      Annie

                                                                                                                      elisabethcamaur01
                                                                                                                      Participant

                                                                                                                        Elisabeth Camaur founded Camaur Crampton Family Law as a resource to help clients through divorce and child custody turmoil with a focus on the future. “Instead of regretfully looking back and affixing blame, I like to look forward.

                                                                                                                        elisabethcamaur01
                                                                                                                        Participant

                                                                                                                          Elisabeth Camaur founded Camaur Crampton Family Law as a resource to help clients through divorce and child custody turmoil with a focus on the future. “Instead of regretfully looking back and affixing blame, I like to look forward.

                                                                                                                          elisabethcamaur01
                                                                                                                          Participant

                                                                                                                            Elisabeth Camaur founded Camaur Crampton Family Law as a resource to help clients through divorce and child custody turmoil with a focus on the future. “Instead of regretfully looking back and affixing blame, I like to look forward.

                                                                                                                            Maria C
                                                                                                                            Participant

                                                                                                                              Hi Annie,

                                                                                                                              Thinking of you and wondering how your dad is doing tonight? I am hoping they go with gamma knife too, although they may need to split the treatment over a couple days because each met I believe takes 10-15 minutes to zap…? Wondering too if his mind will clear once the swelling goes down. Please keep us posted – you and your family are in my thoughts & prayers.

                                                                                                                               

                                                                                                                              uccio2014
                                                                                                                              Participant

                                                                                                                                Hello Annie,

                                                                                                                                here my wife story if could help

                                                                                                                                she is now on braf+mek combo since few week, but she is a responder to zelboraf for 2 years.

                                                                                                                                Last summer despite good response in the rest of body, less then 20 little evidence appared in the brain.

                                                                                                                                they was really rapid growing.

                                                                                                                                To be honest just one was evident in TAC and no syntoms but MRN show more. And between first MRN and the one dome before to start the terapy there was a worsening

                                                                                                                                she received WBR for 20 days, i do not remeber the dose, and this had a great effect.

                                                                                                                                at 1 year she still has some evidence (it is not possible to say if it is tumor or dead cells), but most dumps desappears and all the others strinks and mantains stable.

                                                                                                                                No collateral effect eccept hair loss

                                                                                                                                Antonio

                                                                                                                                 

                                                                                                                                keepthefaith11
                                                                                                                                Participant
                                                                                                                                  Antonio, thank you for this inspiring story. It really helps. I feel if they can get the tumors to go down we can deal with new leisons if they appear. Seems SRS is really efficient keeping disease under control.

                                                                                                                                  Annie

                                                                                                                                  keepthefaith11
                                                                                                                                  Participant
                                                                                                                                    Antonio, thank you for this inspiring story. It really helps. I feel if they can get the tumors to go down we can deal with new leisons if they appear. Seems SRS is really efficient keeping disease under control.

                                                                                                                                    Annie

                                                                                                                                    keepthefaith11
                                                                                                                                    Participant
                                                                                                                                      Antonio, thank you for this inspiring story. It really helps. I feel if they can get the tumors to go down we can deal with new leisons if they appear. Seems SRS is really efficient keeping disease under control.

                                                                                                                                      Annie

                                                                                                                                      uccio2014
                                                                                                                                      Participant

                                                                                                                                        Hello Annie,

                                                                                                                                        here my wife story if could help

                                                                                                                                        she is now on braf+mek combo since few week, but she is a responder to zelboraf for 2 years.

                                                                                                                                        Last summer despite good response in the rest of body, less then 20 little evidence appared in the brain.

                                                                                                                                        they was really rapid growing.

                                                                                                                                        To be honest just one was evident in TAC and no syntoms but MRN show more. And between first MRN and the one dome before to start the terapy there was a worsening

                                                                                                                                        she received WBR for 20 days, i do not remeber the dose, and this had a great effect.

                                                                                                                                        at 1 year she still has some evidence (it is not possible to say if it is tumor or dead cells), but most dumps desappears and all the others strinks and mantains stable.

                                                                                                                                        No collateral effect eccept hair loss

                                                                                                                                        Antonio

                                                                                                                                         

                                                                                                                                        uccio2014
                                                                                                                                        Participant

                                                                                                                                          Hello Annie,

                                                                                                                                          here my wife story if could help

                                                                                                                                          she is now on braf+mek combo since few week, but she is a responder to zelboraf for 2 years.

                                                                                                                                          Last summer despite good response in the rest of body, less then 20 little evidence appared in the brain.

                                                                                                                                          they was really rapid growing.

                                                                                                                                          To be honest just one was evident in TAC and no syntoms but MRN show more. And between first MRN and the one dome before to start the terapy there was a worsening

                                                                                                                                          she received WBR for 20 days, i do not remeber the dose, and this had a great effect.

                                                                                                                                          at 1 year she still has some evidence (it is not possible to say if it is tumor or dead cells), but most dumps desappears and all the others strinks and mantains stable.

                                                                                                                                          No collateral effect eccept hair loss

                                                                                                                                          Antonio

                                                                                                                                           

                                                                                                                                          keepthefaith11
                                                                                                                                          Participant
                                                                                                                                            Thank you Maria for asking. My mom said he was speaking better today and remembered a car appointment that had to be canceled. There does not seem to be an issue woth cognition or memory which is good.

                                                                                                                                            He did say his brain feels “strange”, so I am sure there is lots of pressure in there. I am thinking they will need to do more than one session of SRS.

                                                                                                                                            Thank you, Annie

                                                                                                                                            keepthefaith11
                                                                                                                                            Participant
                                                                                                                                              Thank you Maria for asking. My mom said he was speaking better today and remembered a car appointment that had to be canceled. There does not seem to be an issue woth cognition or memory which is good.

                                                                                                                                              He did say his brain feels “strange”, so I am sure there is lots of pressure in there. I am thinking they will need to do more than one session of SRS.

                                                                                                                                              Thank you, Annie

                                                                                                                                              keepthefaith11
                                                                                                                                              Participant
                                                                                                                                                Thank you Maria for asking. My mom said he was speaking better today and remembered a car appointment that had to be canceled. There does not seem to be an issue woth cognition or memory which is good.

                                                                                                                                                He did say his brain feels “strange”, so I am sure there is lots of pressure in there. I am thinking they will need to do more than one session of SRS.

                                                                                                                                                Thank you, Annie

                                                                                                                                                keepthefaith11
                                                                                                                                                Participant
                                                                                                                                                  Thank you Maria for asking. My mom said he was speaking better today and remembered a car appointment that had to be canceled. There does not seem to be an issue woth cognition or memory which is good.

                                                                                                                                                  He did say his brain feels “strange”, so I am sure there is lots of pressure in there. I am thinking they will need to do more than one session of SRS.

                                                                                                                                                  Thank you, Annie

                                                                                                                                                  keepthefaith11
                                                                                                                                                  Participant
                                                                                                                                                    Thank you Maria for asking. My mom said he was speaking better today and remembered a car appointment that had to be canceled. There does not seem to be an issue woth cognition or memory which is good.

                                                                                                                                                    He did say his brain feels “strange”, so I am sure there is lots of pressure in there. I am thinking they will need to do more than one session of SRS.

                                                                                                                                                    Thank you, Annie

                                                                                                                                                    keepthefaith11
                                                                                                                                                    Participant
                                                                                                                                                      Thank you Maria for asking. My mom said he was speaking better today and remembered a car appointment that had to be canceled. There does not seem to be an issue woth cognition or memory which is good.

                                                                                                                                                      He did say his brain feels “strange”, so I am sure there is lots of pressure in there. I am thinking they will need to do more than one session of SRS.

                                                                                                                                                      Thank you, Annie

                                                                                                                                                      Maria C
                                                                                                                                                      Participant

                                                                                                                                                        Hi Annie,

                                                                                                                                                        Thinking of you and wondering how your dad is doing tonight? I am hoping they go with gamma knife too, although they may need to split the treatment over a couple days because each met I believe takes 10-15 minutes to zap…? Wondering too if his mind will clear once the swelling goes down. Please keep us posted – you and your family are in my thoughts & prayers.

                                                                                                                                                         

                                                                                                                                                        Maria C
                                                                                                                                                        Participant

                                                                                                                                                          Hi Annie,

                                                                                                                                                          Thinking of you and wondering how your dad is doing tonight? I am hoping they go with gamma knife too, although they may need to split the treatment over a couple days because each met I believe takes 10-15 minutes to zap…? Wondering too if his mind will clear once the swelling goes down. Please keep us posted – you and your family are in my thoughts & prayers.

                                                                                                                                                           

                                                                                                                                                        sister of patient
                                                                                                                                                        Participant

                                                                                                                                                          Hi Annie – Also check out "Patina's" postings about her mother –

                                                                                                                                                          https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/stage-iv-28-brain-mets

                                                                                                                                                          17 mets treated in one day with gamma knife, I believe, at USC Norris Comprehensive Cancer Center, LA

                                                                                                                                                          Best thoughts and wishes are with you!!

                                                                                                                                                          Barb

                                                                                                                                                          sister of patient
                                                                                                                                                          Participant

                                                                                                                                                            Hi Annie – Also check out "Patina's" postings about her mother –

                                                                                                                                                            https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/stage-iv-28-brain-mets

                                                                                                                                                            17 mets treated in one day with gamma knife, I believe, at USC Norris Comprehensive Cancer Center, LA

                                                                                                                                                            Best thoughts and wishes are with you!!

                                                                                                                                                            Barb

                                                                                                                                                            sister of patient
                                                                                                                                                            Participant

                                                                                                                                                              Hi Annie – Also check out "Patina's" postings about her mother –

                                                                                                                                                              https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/stage-iv-28-brain-mets

                                                                                                                                                              17 mets treated in one day with gamma knife, I believe, at USC Norris Comprehensive Cancer Center, LA

                                                                                                                                                              Best thoughts and wishes are with you!!

                                                                                                                                                              Barb

                                                                                                                                                                Bubbles
                                                                                                                                                                Participant

                                                                                                                                                                  Absolutely!!  And this from Eva:  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/quick-update-thursday

                                                                                                                                                                  19 brain mets treated in one go with Gamma knife!!!  AND….it's her 5th procedure!!!  Seek locations that can use SRS or Gamma Knife!!!  They do exist!!  Best, celeste

                                                                                                                                                                  Bubbles
                                                                                                                                                                  Participant

                                                                                                                                                                    Absolutely!!  And this from Eva:  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/quick-update-thursday

                                                                                                                                                                    19 brain mets treated in one go with Gamma knife!!!  AND….it's her 5th procedure!!!  Seek locations that can use SRS or Gamma Knife!!!  They do exist!!  Best, celeste

                                                                                                                                                                    Bubbles
                                                                                                                                                                    Participant

                                                                                                                                                                      Absolutely!!  And this from Eva:  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/quick-update-thursday

                                                                                                                                                                      19 brain mets treated in one go with Gamma knife!!!  AND….it's her 5th procedure!!!  Seek locations that can use SRS or Gamma Knife!!!  They do exist!!  Best, celeste

                                                                                                                                                                      keepthefaith11
                                                                                                                                                                      Participant
                                                                                                                                                                        Thank you Barb and Celeste. I sure can use the encouragement! What makes me nervous is that you really do not have choices in their country. You go to the state hospitals and that is it. His hospital is a prominent research hospital and recommended on the Melanoma International website though. I hope they will be progressive.

                                                                                                                                                                        Annie

                                                                                                                                                                        keepthefaith11
                                                                                                                                                                        Participant
                                                                                                                                                                          Thank you Barb and Celeste. I sure can use the encouragement! What makes me nervous is that you really do not have choices in their country. You go to the state hospitals and that is it. His hospital is a prominent research hospital and recommended on the Melanoma International website though. I hope they will be progressive.

                                                                                                                                                                          Annie

                                                                                                                                                                          keepthefaith11
                                                                                                                                                                          Participant
                                                                                                                                                                            Thank you Barb and Celeste. I sure can use the encouragement! What makes me nervous is that you really do not have choices in their country. You go to the state hospitals and that is it. His hospital is a prominent research hospital and recommended on the Melanoma International website though. I hope they will be progressive.

                                                                                                                                                                            Annie

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