› Forums › General Melanoma Community › Any trials in AUST for brain mets
- This topic has 39 replies, 6 voices, and was last updated 11 years, 10 months ago by
caro78.
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- June 19, 2012 at 10:23 am
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 MelbourneHi 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
- Replies
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- June 19, 2012 at 12:03 pm
Nahmi, there really isn't much around. For local trials see:
http://www.clinicaltrials.gov/ct2/results?term=melanoma+brain+metastases&recr=&rslt=&type=&cond=&intr=&outc=&spons=&lead=&id=&state1=&cntry1=PA%3AAU&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=The international situation isn't much better. See:
http://www.clinicaltrials.gov/ct2/results?term=melanoma+brain+metastases&recr=Open&rslt=&type=&cond=&intr=&outc=&spons=&lead=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=How is your dad at the moment?
Take care
Frank from Australia
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- June 19, 2012 at 12:36 pm
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
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- June 20, 2012 at 3:18 am
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/FotemustineIn addition, you could explore the possibility of Gamma Knife treatment. See:
http://muh.org.au/health-services-australia-gamma-knife.htmlIt 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
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- June 20, 2012 at 3:18 am
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/FotemustineIn addition, you could explore the possibility of Gamma Knife treatment. See:
http://muh.org.au/health-services-australia-gamma-knife.htmlIt 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
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- June 20, 2012 at 3:18 am
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/FotemustineIn addition, you could explore the possibility of Gamma Knife treatment. See:
http://muh.org.au/health-services-australia-gamma-knife.htmlIt 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
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- June 19, 2012 at 12:36 pm
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
-
- June 19, 2012 at 12:36 pm
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
-
- June 19, 2012 at 12:03 pm
Nahmi, there really isn't much around. For local trials see:
http://www.clinicaltrials.gov/ct2/results?term=melanoma+brain+metastases&recr=&rslt=&type=&cond=&intr=&outc=&spons=&lead=&id=&state1=&cntry1=PA%3AAU&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=The international situation isn't much better. See:
http://www.clinicaltrials.gov/ct2/results?term=melanoma+brain+metastases&recr=Open&rslt=&type=&cond=&intr=&outc=&spons=&lead=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=How is your dad at the moment?
Take care
Frank from Australia
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- June 19, 2012 at 12:03 pm
Nahmi, there really isn't much around. For local trials see:
http://www.clinicaltrials.gov/ct2/results?term=melanoma+brain+metastases&recr=&rslt=&type=&cond=&intr=&outc=&spons=&lead=&id=&state1=&cntry1=PA%3AAU&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=The international situation isn't much better. See:
http://www.clinicaltrials.gov/ct2/results?term=melanoma+brain+metastases&recr=Open&rslt=&type=&cond=&intr=&outc=&spons=&lead=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=How is your dad at the moment?
Take care
Frank from Australia
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- June 19, 2012 at 12:47 pm
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. -
- June 19, 2012 at 12:47 pm
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. -
- June 19, 2012 at 12:47 pm
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. -
- June 19, 2012 at 11:52 pm
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.
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- June 19, 2012 at 11:52 pm
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.
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- June 20, 2012 at 3:47 am
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
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- June 20, 2012 at 3:47 am
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
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- June 20, 2012 at 4:25 am
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.
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- June 20, 2012 at 4:25 am
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.
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- June 20, 2012 at 4:25 am
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.
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- June 20, 2012 at 10:50 am
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
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- June 20, 2012 at 10:50 am
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
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- June 20, 2012 at 10:50 am
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
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- June 20, 2012 at 3:47 am
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
-
- June 19, 2012 at 11:52 pm
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.
-
- June 21, 2012 at 11:14 am
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
-
- June 23, 2012 at 11:16 am
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
-
- June 23, 2012 at 11:16 am
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
-
- June 24, 2012 at 3:25 am
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 🙂
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- June 24, 2012 at 3:25 am
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 🙂
-
- June 24, 2012 at 3:25 am
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 🙂
-
- June 23, 2012 at 11:16 am
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
-
- June 21, 2012 at 11:14 am
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
-
- June 21, 2012 at 11:14 am
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
-
- June 23, 2012 at 1:32 am
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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- June 23, 2012 at 1:32 am
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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- June 23, 2012 at 1:32 am
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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