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Any trials in AUST for brain mets

Forums General Melanoma Community Any trials in AUST for brain mets

  • Post
    deardad
    Participant

      Hi does any one know of trials in Australia for patients with brain mets?

      I'm guessing that's a long shot…

      Thanks in advance 
      Nahmi from Melbourne

      Hi does any one know of trials in Australia for patients with brain mets?

      I'm guessing that's a long shot…

      Thanks in advance 
      Nahmi from Melbourne

    Viewing 14 reply threads
    • Replies
          deardad
          Participant

            Hi Frank,

            Yeah there isnt much when you have brain mets, it's pretty depressing really.

            Dad's feeling ok, tired in the afternoons but he's on Temador. He said he felt a new lump near his shoulder, so I don't think the chemos working. He walked 2kms slowly today, so he feels ok, but since my mum isn't coping he tends not to let on too much if there is a pain somewhere. From what I can see there's no major headaches or pains, he's not taking any pain killers. I just know things can turn so quickly and it just feels so hopeless with so little treatment options. He has a scan next Friday and then we see the oncologist.

            I just wonder if we should try to see if gamma knife is possible (at Westmead in Sydney) if the WBR hasn't stabilised things, otherwise he will never get on a trial.

            Do you think IPI is something we should consider. We'll have to pay for it and the onc doesn't think it's worth it?

            Thanks 

            Nahmi

            FormerCaregiver
            Participant

              Nahmi, it sounds like your dad's condition is fairly reasonable at the moment as he can
              walk 2km and isn't on pain medication. If it is determined that Temador isn't working
              you could ask the oncologist about trying fotemustine, which is a chemo drug that
              crosses the blood brain barrier like Temodar. I think that it is still available here,
              but has limited availability elsewhere. See: http://en.wikipedia.org/wiki/Fotemustine

              In addition, you could explore the possibility of Gamma Knife treatment. See:
              http://muh.org.au/health-services-australia-gamma-knife.html

              It would also be good to find another oncologist who is more experienced in using
              Yervoy, as a second opinion can be very worthwhile.

              Take care

              Frank from Australia

              FormerCaregiver
              Participant

                Nahmi, it sounds like your dad's condition is fairly reasonable at the moment as he can
                walk 2km and isn't on pain medication. If it is determined that Temador isn't working
                you could ask the oncologist about trying fotemustine, which is a chemo drug that
                crosses the blood brain barrier like Temodar. I think that it is still available here,
                but has limited availability elsewhere. See: http://en.wikipedia.org/wiki/Fotemustine

                In addition, you could explore the possibility of Gamma Knife treatment. See:
                http://muh.org.au/health-services-australia-gamma-knife.html

                It would also be good to find another oncologist who is more experienced in using
                Yervoy, as a second opinion can be very worthwhile.

                Take care

                Frank from Australia

                FormerCaregiver
                Participant

                  Nahmi, it sounds like your dad's condition is fairly reasonable at the moment as he can
                  walk 2km and isn't on pain medication. If it is determined that Temador isn't working
                  you could ask the oncologist about trying fotemustine, which is a chemo drug that
                  crosses the blood brain barrier like Temodar. I think that it is still available here,
                  but has limited availability elsewhere. See: http://en.wikipedia.org/wiki/Fotemustine

                  In addition, you could explore the possibility of Gamma Knife treatment. See:
                  http://muh.org.au/health-services-australia-gamma-knife.html

                  It would also be good to find another oncologist who is more experienced in using
                  Yervoy, as a second opinion can be very worthwhile.

                  Take care

                  Frank from Australia

                  deardad
                  Participant

                    Hi Frank,

                    Yeah there isnt much when you have brain mets, it's pretty depressing really.

                    Dad's feeling ok, tired in the afternoons but he's on Temador. He said he felt a new lump near his shoulder, so I don't think the chemos working. He walked 2kms slowly today, so he feels ok, but since my mum isn't coping he tends not to let on too much if there is a pain somewhere. From what I can see there's no major headaches or pains, he's not taking any pain killers. I just know things can turn so quickly and it just feels so hopeless with so little treatment options. He has a scan next Friday and then we see the oncologist.

                    I just wonder if we should try to see if gamma knife is possible (at Westmead in Sydney) if the WBR hasn't stabilised things, otherwise he will never get on a trial.

                    Do you think IPI is something we should consider. We'll have to pay for it and the onc doesn't think it's worth it?

                    Thanks 

                    Nahmi

                    deardad
                    Participant

                      Hi Frank,

                      Yeah there isnt much when you have brain mets, it's pretty depressing really.

                      Dad's feeling ok, tired in the afternoons but he's on Temador. He said he felt a new lump near his shoulder, so I don't think the chemos working. He walked 2kms slowly today, so he feels ok, but since my mum isn't coping he tends not to let on too much if there is a pain somewhere. From what I can see there's no major headaches or pains, he's not taking any pain killers. I just know things can turn so quickly and it just feels so hopeless with so little treatment options. He has a scan next Friday and then we see the oncologist.

                      I just wonder if we should try to see if gamma knife is possible (at Westmead in Sydney) if the WBR hasn't stabilised things, otherwise he will never get on a trial.

                      Do you think IPI is something we should consider. We'll have to pay for it and the onc doesn't think it's worth it?

                      Thanks 

                      Nahmi

                    AllyNTAus
                    Participant
                      Nahmi, have you tried getting in contact with Dr Georgina Long or Professor Rick Kefford either thru the Westmead Cancer Care/Millenium Research Institute or the Melanoma Institute at North Sydney? I was certain there was still some trialling of Dabrafenib occurring with people with brain mets.
                      AllyNTAus
                      Participant
                        Nahmi, have you tried getting in contact with Dr Georgina Long or Professor Rick Kefford either thru the Westmead Cancer Care/Millenium Research Institute or the Melanoma Institute at North Sydney? I was certain there was still some trialling of Dabrafenib occurring with people with brain mets.
                        AllyNTAus
                        Participant
                          Nahmi, have you tried getting in contact with Dr Georgina Long or Professor Rick Kefford either thru the Westmead Cancer Care/Millenium Research Institute or the Melanoma Institute at North Sydney? I was certain there was still some trialling of Dabrafenib occurring with people with brain mets.
                          benp
                          Participant

                            Hi Nahmi,

                             

                            I know the frustration of the lack of options for brain mets in Australia. The Dabrafenib study at Westmead is closed (I am/was on it).  I Gamma Knife does seem like a good idea (I had this one month ago for 10 lesions), but if you can, I would go with Ipi asap. The chances of an objective response are very low (about 5-10%) at this dosage, though it may keep things stable for long enough for something else to come along down the track.

                            benp
                            Participant

                              Hi Nahmi,

                               

                              I know the frustration of the lack of options for brain mets in Australia. The Dabrafenib study at Westmead is closed (I am/was on it).  I Gamma Knife does seem like a good idea (I had this one month ago for 10 lesions), but if you can, I would go with Ipi asap. The chances of an objective response are very low (about 5-10%) at this dosage, though it may keep things stable for long enough for something else to come along down the track.

                                deardad
                                Participant

                                  Hi Ben, how did you go on Dabrafenib? Did the gamma knife show a response?

                                  My dad's onc is not recommending IPI, he thinks it's not worth it.

                                  I may still try for gamma, although the head of radiation at Peter Mac said they wouldn't consider him because of the mets through the body.

                                  Just feel like we have no real options, melanoma stinks…I'm sorry you are all dealing with this.

                                  Nahmi

                                  deardad
                                  Participant

                                    Hi Ben, how did you go on Dabrafenib? Did the gamma knife show a response?

                                    My dad's onc is not recommending IPI, he thinks it's not worth it.

                                    I may still try for gamma, although the head of radiation at Peter Mac said they wouldn't consider him because of the mets through the body.

                                    Just feel like we have no real options, melanoma stinks…I'm sorry you are all dealing with this.

                                    Nahmi

                                    benp
                                    Participant

                                      Hi Nahmi, 

                                      I went very well on Dabrafenib until a couple of months ago. I am now looking overseas for further options. It's too soon to know if the Gamma Knife did any good. I'm meeting the radio-oncologist tomorrow actually. 

                                      Does your Dad require steroids for his brain mets? If not, then this is probably the best option in Australia, if you can get on it.

                                      http://www.anzctr.org.au/ACTRN12611001136998.aspx

                                      Ben.

                                      benp
                                      Participant

                                        Hi Nahmi, 

                                        I went very well on Dabrafenib until a couple of months ago. I am now looking overseas for further options. It's too soon to know if the Gamma Knife did any good. I'm meeting the radio-oncologist tomorrow actually. 

                                        Does your Dad require steroids for his brain mets? If not, then this is probably the best option in Australia, if you can get on it.

                                        http://www.anzctr.org.au/ACTRN12611001136998.aspx

                                        Ben.

                                        benp
                                        Participant

                                          Hi Nahmi, 

                                          I went very well on Dabrafenib until a couple of months ago. I am now looking overseas for further options. It's too soon to know if the Gamma Knife did any good. I'm meeting the radio-oncologist tomorrow actually. 

                                          Does your Dad require steroids for his brain mets? If not, then this is probably the best option in Australia, if you can get on it.

                                          http://www.anzctr.org.au/ACTRN12611001136998.aspx

                                          Ben.

                                          deardad
                                          Participant

                                            Hi Ben thanks for that information, I've called the office to find out about that trial and she is calling back in the morning. I hope that you can get into a ANTIPD1 trial in the OS they sound very promising. Let us know whether you find something.

                                            Stay positive, go forward.

                                            Thanks again,

                                            Nahmi

                                            deardad
                                            Participant

                                              Hi Ben thanks for that information, I've called the office to find out about that trial and she is calling back in the morning. I hope that you can get into a ANTIPD1 trial in the OS they sound very promising. Let us know whether you find something.

                                              Stay positive, go forward.

                                              Thanks again,

                                              Nahmi

                                              deardad
                                              Participant

                                                Hi Ben thanks for that information, I've called the office to find out about that trial and she is calling back in the morning. I hope that you can get into a ANTIPD1 trial in the OS they sound very promising. Let us know whether you find something.

                                                Stay positive, go forward.

                                                Thanks again,

                                                Nahmi

                                                deardad
                                                Participant

                                                  ps hope all goes well with the radiologist tomorrow.

                                                  deardad
                                                  Participant

                                                    ps hope all goes well with the radiologist tomorrow.

                                                    deardad
                                                    Participant

                                                      ps hope all goes well with the radiologist tomorrow.

                                                      deardad
                                                      Participant

                                                        Hi Ben, how did you go on Dabrafenib? Did the gamma knife show a response?

                                                        My dad's onc is not recommending IPI, he thinks it's not worth it.

                                                        I may still try for gamma, although the head of radiation at Peter Mac said they wouldn't consider him because of the mets through the body.

                                                        Just feel like we have no real options, melanoma stinks…I'm sorry you are all dealing with this.

                                                        Nahmi

                                                      benp
                                                      Participant

                                                        Hi Nahmi,

                                                         

                                                        I know the frustration of the lack of options for brain mets in Australia. The Dabrafenib study at Westmead is closed (I am/was on it).  I Gamma Knife does seem like a good idea (I had this one month ago for 10 lesions), but if you can, I would go with Ipi asap. The chances of an objective response are very low (about 5-10%) at this dosage, though it may keep things stable for long enough for something else to come along down the track.

                                                        caro78
                                                        Participant

                                                          Hi Nahmi,

                                                          My father too has brain mets and we are hopefully going to start the yervoy trial (blinded study of 3mg v 10mg). There seems to be a lot of side effects and I'm not really sure if this is the best path. We find out tomorrow if he will go on this. Does your dad have any symptoms? My dad also has mets in his liver and two on his lung. There doesn't seem too many paths you are able to travel with this which is such a shame. We did WHR and we aren't sure if this has been successful since its only been four weeks and they won't do a scan till after six weeks.

                                                          If you know of anything, would love to hear about it. Any information is good as I ask as many questions as I can for my dad. My sisters and I will do anything we can to help him.

                                                          Good luck with your dad.

                                                          Thanks

                                                            deardad
                                                            Participant

                                                              Hi sorry you are going through this too, where is this yervoy trial your dad is going on? My dad I believe is asymtomatic at the moment.

                                                              I know there is a trial in QLD, which included IPI, a vaccine and chemo if you want more info I can give you a number to contact. It's such a tough time I know.

                                                              Take care and all the best with your dad.

                                                              Nahmi

                                                              deardad
                                                              Participant

                                                                Hi sorry you are going through this too, where is this yervoy trial your dad is going on? My dad I believe is asymtomatic at the moment.

                                                                I know there is a trial in QLD, which included IPI, a vaccine and chemo if you want more info I can give you a number to contact. It's such a tough time I know.

                                                                Take care and all the best with your dad.

                                                                Nahmi

                                                                caro78
                                                                Participant

                                                                  Hi Nahmi,

                                                                  Any information you could give me would be great. A contact number would be wonderful!

                                                                  Its such a terrible disease and so heartbreaking to watch loved ones go through. But I guess, we have to believe that everything happens for a reason and if they believe that they can fight this, then hopefully that will help them get through it. It has brought our family much closer and my dad has been so great.

                                                                  I just want him to keep fighting and if anything can help him continue on for however long, then we will give it it a go. He has never been sick a day in his life and still looks great (minus his hair from WBR) but gets frustrated from being tired and short of breath.

                                                                  Thanks Nahmi. Its nice to be able to talk to someone going through the same thing.

                                                                  Caro ๐Ÿ™‚

                                                                  caro78
                                                                  Participant

                                                                    Hi Nahmi,

                                                                    Any information you could give me would be great. A contact number would be wonderful!

                                                                    Its such a terrible disease and so heartbreaking to watch loved ones go through. But I guess, we have to believe that everything happens for a reason and if they believe that they can fight this, then hopefully that will help them get through it. It has brought our family much closer and my dad has been so great.

                                                                    I just want him to keep fighting and if anything can help him continue on for however long, then we will give it it a go. He has never been sick a day in his life and still looks great (minus his hair from WBR) but gets frustrated from being tired and short of breath.

                                                                    Thanks Nahmi. Its nice to be able to talk to someone going through the same thing.

                                                                    Caro ๐Ÿ™‚

                                                                    caro78
                                                                    Participant

                                                                      Hi Nahmi,

                                                                      Any information you could give me would be great. A contact number would be wonderful!

                                                                      Its such a terrible disease and so heartbreaking to watch loved ones go through. But I guess, we have to believe that everything happens for a reason and if they believe that they can fight this, then hopefully that will help them get through it. It has brought our family much closer and my dad has been so great.

                                                                      I just want him to keep fighting and if anything can help him continue on for however long, then we will give it it a go. He has never been sick a day in his life and still looks great (minus his hair from WBR) but gets frustrated from being tired and short of breath.

                                                                      Thanks Nahmi. Its nice to be able to talk to someone going through the same thing.

                                                                      Caro ๐Ÿ™‚

                                                                      deardad
                                                                      Participant

                                                                        Hi sorry you are going through this too, where is this yervoy trial your dad is going on? My dad I believe is asymtomatic at the moment.

                                                                        I know there is a trial in QLD, which included IPI, a vaccine and chemo if you want more info I can give you a number to contact. It's such a tough time I know.

                                                                        Take care and all the best with your dad.

                                                                        Nahmi

                                                                      caro78
                                                                      Participant

                                                                        Hi Nahmi,

                                                                        My father too has brain mets and we are hopefully going to start the yervoy trial (blinded study of 3mg v 10mg). There seems to be a lot of side effects and I'm not really sure if this is the best path. We find out tomorrow if he will go on this. Does your dad have any symptoms? My dad also has mets in his liver and two on his lung. There doesn't seem too many paths you are able to travel with this which is such a shame. We did WHR and we aren't sure if this has been successful since its only been four weeks and they won't do a scan till after six weeks.

                                                                        If you know of anything, would love to hear about it. Any information is good as I ask as many questions as I can for my dad. My sisters and I will do anything we can to help him.

                                                                        Good luck with your dad.

                                                                        Thanks

                                                                        caro78
                                                                        Participant

                                                                          Hi Nahmi,

                                                                          My father too has brain mets and we are hopefully going to start the yervoy trial (blinded study of 3mg v 10mg). There seems to be a lot of side effects and I'm not really sure if this is the best path. We find out tomorrow if he will go on this. Does your dad have any symptoms? My dad also has mets in his liver and two on his lung. There doesn't seem too many paths you are able to travel with this which is such a shame. We did WHR and we aren't sure if this has been successful since its only been four weeks and they won't do a scan till after six weeks.

                                                                          If you know of anything, would love to hear about it. Any information is good as I ask as many questions as I can for my dad. My sisters and I will do anything we can to help him.

                                                                          Good luck with your dad.

                                                                          Thanks

                                                                          Kris Oz
                                                                          Participant

                                                                            Nahmi

                                                                            As Frank has suggested, maybe you should ask your onc about fotemustine (if you can't find a trial or something for the interim).  We were told that this can work when DTIC hasn't and does cross the blood brain barrier.

                                                                            All the best

                                                                            Kristy (Perth)

                                                                            Kris Oz
                                                                            Participant

                                                                              Nahmi

                                                                              As Frank has suggested, maybe you should ask your onc about fotemustine (if you can't find a trial or something for the interim).  We were told that this can work when DTIC hasn't and does cross the blood brain barrier.

                                                                              All the best

                                                                              Kristy (Perth)

                                                                              Kris Oz
                                                                              Participant

                                                                                Nahmi

                                                                                As Frank has suggested, maybe you should ask your onc about fotemustine (if you can't find a trial or something for the interim).  We were told that this can work when DTIC hasn't and does cross the blood brain barrier.

                                                                                All the best

                                                                                Kristy (Perth)

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