› Forums › General Melanoma Community › Stage 4 melanoma in a fit, sporty man – WE NEED INFORMATION!
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pigs_sty.
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- May 29, 2014 at 3:08 pm
My husband has stage 4 melanoma which he has been fighting for over five years now.
He is still doing sport and working having tried many standard treatments, numerous operations and also clinical trials.
We are on a phase 1 trial however the side effects are proving too challenging to manage so we need to find something else to go for.
The NHS dont always tell you what is available – new drugs or even trials available in the UK or elswhere in the world so please if anyone knows what we can try – however much it costs or where it is, plesae point me in the right direction…
Metastatic melanomaB-RAF Wild typeN-RAS MutantLung and nodal diseaseSevere allergy to paclitaxel & trametinibSevere rash to ippimumilab which only worked for 5 monthsTrial phase 1 : RO5126766 (dual RAF/MEK inhibitor) 27% tumour reduction however having to be taken off it due to effects so tumours coming back.Thank you for taking the time to read this and hopefully find us a solution.
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- May 29, 2014 at 5:25 pm
Hi, Since you noted anywhere in the world for a cure, the man to contact is Ralph Moss.He offers a consulting service for all type of cancers. Do a search on "Ralph Moss and melanoma".The following info may be of some interest, this is from the Moss Report.Germany and its neighboring countries are world leaders in non-conventional cancer treatment. There are at least 60 CAM-oriented clinics, which treat cancer, in whole or in part, using the methods of complementary and alternative medicine (CAM). Many of them are located in attractive spa towns. (A spa town is indicated by the German word "Bad" (spa) in the name.)This report shall focus on clinics that are clearly "open for business" for English-speaking patients. This leaves ten in Germany, four in Switzerland, two in Austria, and one in Denmark (not technically a German-speaking country, but strongly influenced by German practices).More info about Germany clinics can be found here.Here is another great place for info.He needs to have his Vitamin D3 levels checked. If you are going to fight this beast the proper range should be in the 80 to 100 25(OH)D levels.Improved Survival in Cancer Patients With High Vitamin D Levelssee:Selenium and Ubiquinol are also necessary.Best wishes,Gene -
- May 29, 2014 at 5:25 pm
Hi, Since you noted anywhere in the world for a cure, the man to contact is Ralph Moss.He offers a consulting service for all type of cancers. Do a search on "Ralph Moss and melanoma".The following info may be of some interest, this is from the Moss Report.Germany and its neighboring countries are world leaders in non-conventional cancer treatment. There are at least 60 CAM-oriented clinics, which treat cancer, in whole or in part, using the methods of complementary and alternative medicine (CAM). Many of them are located in attractive spa towns. (A spa town is indicated by the German word "Bad" (spa) in the name.)This report shall focus on clinics that are clearly "open for business" for English-speaking patients. This leaves ten in Germany, four in Switzerland, two in Austria, and one in Denmark (not technically a German-speaking country, but strongly influenced by German practices).More info about Germany clinics can be found here.Here is another great place for info.He needs to have his Vitamin D3 levels checked. If you are going to fight this beast the proper range should be in the 80 to 100 25(OH)D levels.Improved Survival in Cancer Patients With High Vitamin D Levelssee:Selenium and Ubiquinol are also necessary.Best wishes,Gene-
- May 29, 2014 at 7:21 pm
Hi Gene,
thanks for posting this important information again in this thread. I remember you also pointed me to the Moss report.
However, I checked the 2 sites in Austria where I live out (as far as I can remember it was one in Vienna, one in Carinthia or so).
The one in Vienna seems only to be registered as a standard GP without any website which I found strange.
Then one in Carinthia seems to have gone bankrupt 2 years ago according to a newspaper article Google found.
I don't know how old your copy of the report is but I would really like to know how up to date they can keep their reports for all kinds of cancer as contact data is concerned.
However, my contribution to the discussion on CAM:
http://www.dr-kleef.at/en/home
This is a private clinic in Vienna which has lots of patients from all over the world obviously for whom money does not matter.
Thery offer dendritic cell therapy, hyperthermia (whole body and local), IL-2 in combination with Taurolidine which is supposed to mitigate the heavy side effects and other stuff. They also know a lot about supplements…
I spoke to Dr. Kleef who obivously spent some time of his career at MSKCC. He seems very competent to me.
Another cencter which I have not visited yet, also located in Vienna:
http://www.medvital.at/index.php?idcatside=1&lang=2They also offer dendritic cells and different other complementary things.
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- May 29, 2014 at 7:21 pm
Hi Gene,
thanks for posting this important information again in this thread. I remember you also pointed me to the Moss report.
However, I checked the 2 sites in Austria where I live out (as far as I can remember it was one in Vienna, one in Carinthia or so).
The one in Vienna seems only to be registered as a standard GP without any website which I found strange.
Then one in Carinthia seems to have gone bankrupt 2 years ago according to a newspaper article Google found.
I don't know how old your copy of the report is but I would really like to know how up to date they can keep their reports for all kinds of cancer as contact data is concerned.
However, my contribution to the discussion on CAM:
http://www.dr-kleef.at/en/home
This is a private clinic in Vienna which has lots of patients from all over the world obviously for whom money does not matter.
Thery offer dendritic cell therapy, hyperthermia (whole body and local), IL-2 in combination with Taurolidine which is supposed to mitigate the heavy side effects and other stuff. They also know a lot about supplements…
I spoke to Dr. Kleef who obivously spent some time of his career at MSKCC. He seems very competent to me.
Another cencter which I have not visited yet, also located in Vienna:
http://www.medvital.at/index.php?idcatside=1&lang=2They also offer dendritic cells and different other complementary things.
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- May 29, 2014 at 7:21 pm
Hi Gene,
thanks for posting this important information again in this thread. I remember you also pointed me to the Moss report.
However, I checked the 2 sites in Austria where I live out (as far as I can remember it was one in Vienna, one in Carinthia or so).
The one in Vienna seems only to be registered as a standard GP without any website which I found strange.
Then one in Carinthia seems to have gone bankrupt 2 years ago according to a newspaper article Google found.
I don't know how old your copy of the report is but I would really like to know how up to date they can keep their reports for all kinds of cancer as contact data is concerned.
However, my contribution to the discussion on CAM:
http://www.dr-kleef.at/en/home
This is a private clinic in Vienna which has lots of patients from all over the world obviously for whom money does not matter.
Thery offer dendritic cell therapy, hyperthermia (whole body and local), IL-2 in combination with Taurolidine which is supposed to mitigate the heavy side effects and other stuff. They also know a lot about supplements…
I spoke to Dr. Kleef who obivously spent some time of his career at MSKCC. He seems very competent to me.
Another cencter which I have not visited yet, also located in Vienna:
http://www.medvital.at/index.php?idcatside=1&lang=2They also offer dendritic cells and different other complementary things.
-
- May 29, 2014 at 5:25 pm
Hi, Since you noted anywhere in the world for a cure, the man to contact is Ralph Moss.He offers a consulting service for all type of cancers. Do a search on "Ralph Moss and melanoma".The following info may be of some interest, this is from the Moss Report.Germany and its neighboring countries are world leaders in non-conventional cancer treatment. There are at least 60 CAM-oriented clinics, which treat cancer, in whole or in part, using the methods of complementary and alternative medicine (CAM). Many of them are located in attractive spa towns. (A spa town is indicated by the German word "Bad" (spa) in the name.)This report shall focus on clinics that are clearly "open for business" for English-speaking patients. This leaves ten in Germany, four in Switzerland, two in Austria, and one in Denmark (not technically a German-speaking country, but strongly influenced by German practices).More info about Germany clinics can be found here.Here is another great place for info.He needs to have his Vitamin D3 levels checked. If you are going to fight this beast the proper range should be in the 80 to 100 25(OH)D levels.Improved Survival in Cancer Patients With High Vitamin D Levelssee:Selenium and Ubiquinol are also necessary.Best wishes,Gene -
- May 31, 2014 at 7:44 am
My wife was recently diagnosed with stage 4 and we are in the UK also, where are you receiving treatment and who by? I believe professor Ruth Plummer at the northern centre for cancer care is the best in the country especially for early phase trials. Dr Paul lorigan is based at the Christie in Manchester and is also a respected leader in this field, they also offer act there I think. Dont hesitate to contact me if I can help -
- May 31, 2014 at 7:44 am
My wife was recently diagnosed with stage 4 and we are in the UK also, where are you receiving treatment and who by? I believe professor Ruth Plummer at the northern centre for cancer care is the best in the country especially for early phase trials. Dr Paul lorigan is based at the Christie in Manchester and is also a respected leader in this field, they also offer act there I think. Dont hesitate to contact me if I can help -
- May 31, 2014 at 7:44 am
My wife was recently diagnosed with stage 4 and we are in the UK also, where are you receiving treatment and who by? I believe professor Ruth Plummer at the northern centre for cancer care is the best in the country especially for early phase trials. Dr Paul lorigan is based at the Christie in Manchester and is also a respected leader in this field, they also offer act there I think. Dont hesitate to contact me if I can help
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