Alternative medcine?? We are going into this blind, any and all help gratefully recieved.

There has not been any successful alternative therapy for uveal melanoma. So I do not see it would be worth the effort to travel for alternative therapies.

I know someone who has responded to private treatment in Israel there tumour was also of unknown primary or possibly mucosal.

That pateint responde with shrinkage of his liver lesions to a cocktail of chemo and Interleukin2 high dose.

Each round of treatment cost about £9000 and there were other costs too.scans etc.

There has not been any successful alternative therapy for uveal melanoma. So I do not see it would be worth the effort to travel for alternative therapies.

I know someone who has responded to private treatment in Israel there tumour was also of unknown primary or possibly mucosal.

That pateint responde with shrinkage of his liver lesions to a cocktail of chemo and Interleukin2 high dose.

Each round of treatment cost about £9000 and there were other costs too.scans etc.

There has not been any successful alternative therapy for uveal melanoma. So I do not see it would be worth the effort to travel for alternative therapies.

I know someone who has responded to private treatment in Israel there tumour was also of unknown primary or possibly mucosal.

That pateint responde with shrinkage of his liver lesions to a cocktail of chemo and Interleukin2 high dose.

Each round of treatment cost about £9000 and there were other costs too.scans etc.

We also live in New Zealand. My husband has stage 4 melanoma and is 58. Have you had braf testing to see if he is negative or positive for the mutation. My husband is negative and he has just finished his fourth infusion of ipilumamab.. Unfortunately it is not funded in NZ and has cost around $300,000 for the four infusions which,have to be administered privately.. If he had been positive for the braf mutation he would have been able to get. Zelboraf as part of a compassionate use programme. If your husband hasn’t been tested he needs to be ASAP. I understand that if you are positive for the braf mutation you should take the zelborafy as it is very fast acting but you can become resistant to it. Braf positive people can then take ipi. There is also another drug which I think is a later version of zelboraf called dabrafebab (sp) which is also on the compassionate use programme. My husband’s oncologist was very reluctant to prescribe the ipi due to the side effects and cost but we went ahead with it. My husband suffered very minor side effects and does not seem to have gone downhill since he started it. He is to have PET scan in the next month or so to see what effect it has had on his tumours which included brain, spine, lung, bones,adrenal gland etc. our biggest problem is that the tumour in his cauda equina has left him in a wheelchair due to nerve damage. He had dicarbazine chemo as first line treatment but it did not work. He then has radiation whole brain and on his spine which were very effective in controlling pain and alleviating headaches. He was a pilot so now is unable to work. He has a very positive attitude and we are hopeful that the ipi will prove successful as time seems to be of the essence with all the new treatments which seem to be in development. Hope this helps.
Barbara

We also live in New Zealand. My husband has stage 4 melanoma and is 58. Have you had braf testing to see if he is negative or positive for the mutation. My husband is negative and he has just finished his fourth infusion of ipilumamab.. Unfortunately it is not funded in NZ and has cost around $300,000 for the four infusions which,have to be administered privately.. If he had been positive for the braf mutation he would have been able to get. Zelboraf as part of a compassionate use programme. If your husband hasn’t been tested he needs to be ASAP. I understand that if you are positive for the braf mutation you should take the zelborafy as it is very fast acting but you can become resistant to it. Braf positive people can then take ipi. There is also another drug which I think is a later version of zelboraf called dabrafebab (sp) which is also on the compassionate use programme. My husband’s oncologist was very reluctant to prescribe the ipi due to the side effects and cost but we went ahead with it. My husband suffered very minor side effects and does not seem to have gone downhill since he started it. He is to have PET scan in the next month or so to see what effect it has had on his tumours which included brain, spine, lung, bones,adrenal gland etc. our biggest problem is that the tumour in his cauda equina has left him in a wheelchair due to nerve damage. He had dicarbazine chemo as first line treatment but it did not work. He then has radiation whole brain and on his spine which were very effective in controlling pain and alleviating headaches. He was a pilot so now is unable to work. He has a very positive attitude and we are hopeful that the ipi will prove successful as time seems to be of the essence with all the new treatments which seem to be in development. Hope this helps.
Barbara

We also live in New Zealand. My husband has stage 4 melanoma and is 58. Have you had braf testing to see if he is negative or positive for the mutation. My husband is negative and he has just finished his fourth infusion of ipilumamab.. Unfortunately it is not funded in NZ and has cost around $300,000 for the four infusions which,have to be administered privately.. If he had been positive for the braf mutation he would have been able to get. Zelboraf as part of a compassionate use programme. If your husband hasn’t been tested he needs to be ASAP. I understand that if you are positive for the braf mutation you should take the zelborafy as it is very fast acting but you can become resistant to it. Braf positive people can then take ipi. There is also another drug which I think is a later version of zelboraf called dabrafebab (sp) which is also on the compassionate use programme. My husband’s oncologist was very reluctant to prescribe the ipi due to the side effects and cost but we went ahead with it. My husband suffered very minor side effects and does not seem to have gone downhill since he started it. He is to have PET scan in the next month or so to see what effect it has had on his tumours which included brain, spine, lung, bones,adrenal gland etc. our biggest problem is that the tumour in his cauda equina has left him in a wheelchair due to nerve damage. He had dicarbazine chemo as first line treatment but it did not work. He then has radiation whole brain and on his spine which were very effective in controlling pain and alleviating headaches. He was a pilot so now is unable to work. He has a very positive attitude and we are hopeful that the ipi will prove successful as time seems to be of the essence with all the new treatments which seem to be in development. Hope this helps.
Barbara