AnnG

Thanks to all who replied.

Surgery went well and I'm pretty sore but managing with Tylenol.

Pathology report showed melanoma limited to one lymph node. All others free of cancer. The tumor board at University of Rochester will review my case next week and then I'll see the Oncologist. 

Does anyone in this unique group have a great melanoma specialist they would recommend? I did go to Univ Pittsburgh for another opinion in September before starting Interferon but that was not helpful.  I didn't feel the Dr was treating me-more interested in getting me to participate in a trial.

Thank you

Thanks to all who replied.

Surgery went well and I'm pretty sore but managing with Tylenol.

Pathology report showed melanoma limited to one lymph node. All others free of cancer. The tumor board at University of Rochester will review my case next week and then I'll see the Oncologist. 

Does anyone in this unique group have a great melanoma specialist they would recommend? I did go to Univ Pittsburgh for another opinion in September before starting Interferon but that was not helpful.  I didn't feel the Dr was treating me-more interested in getting me to participate in a trial.

Thank you

Thanks to all who replied.

Surgery went well and I'm pretty sore but managing with Tylenol.

Pathology report showed melanoma limited to one lymph node. All others free of cancer. The tumor board at University of Rochester will review my case next week and then I'll see the Oncologist. 

Does anyone in this unique group have a great melanoma specialist they would recommend? I did go to Univ Pittsburgh for another opinion in September before starting Interferon but that was not helpful.  I didn't feel the Dr was treating me-more interested in getting me to participate in a trial.

Thank you

Thank you for your advice,

I have requested that the tumor tissue be tested for the BRAF,  c-KIT and NRAS.  Is this not standard procedure?

Searching for investigative trials is challenging–most require something to measure-which fortunately I am NED. I am going to look into some new technologies that test the blood for microscopic cells. 

I live in western NY but want to go to a top Melanoma Center where the Drs have seen unusual presenations such as mine. I may have neglected to mention that one out of four Pathologist believes that the orginal MEL on my back was the primary–which changes the staging. And this makes "sense" since the spread was to the regional lymph node –not a distant site.

If you have access to clinic trials please let me know!  Is there a database of how many patients are seen at these Mel Centers and a break down of different stages, no primary, etc?

Thank you

Thank you for your advice,

I have requested that the tumor tissue be tested for the BRAF,  c-KIT and NRAS.  Is this not standard procedure?

Searching for investigative trials is challenging–most require something to measure-which fortunately I am NED. I am going to look into some new technologies that test the blood for microscopic cells. 

I live in western NY but want to go to a top Melanoma Center where the Drs have seen unusual presenations such as mine. I may have neglected to mention that one out of four Pathologist believes that the orginal MEL on my back was the primary–which changes the staging. And this makes "sense" since the spread was to the regional lymph node –not a distant site.

If you have access to clinic trials please let me know!  Is there a database of how many patients are seen at these Mel Centers and a break down of different stages, no primary, etc?

Thank you

Thank you for your advice,

I have requested that the tumor tissue be tested for the BRAF,  c-KIT and NRAS.  Is this not standard procedure?

Searching for investigative trials is challenging–most require something to measure-which fortunately I am NED. I am going to look into some new technologies that test the blood for microscopic cells. 

I live in western NY but want to go to a top Melanoma Center where the Drs have seen unusual presenations such as mine. I may have neglected to mention that one out of four Pathologist believes that the orginal MEL on my back was the primary–which changes the staging. And this makes "sense" since the spread was to the regional lymph node –not a distant site.

If you have access to clinic trials please let me know!  Is there a database of how many patients are seen at these Mel Centers and a break down of different stages, no primary, etc?

Thank you

Thank you for this information.

I don't want to put myself through the Leukine treatment if it is ineffective or worst can cause more harm by making tumors.

Since I am NED and there are no approved blood tests to detect any remaining MEL cells, I am at a loss for what to do on a preventative basis. I'd rather be proactive then wait and see.

Most trials seem to be for measurable disease but I will continue to research.

I am going to have the pathologist test for the Braf mutation and NRAS mutation as these were not completed. 

Are you in the medical field or just a patient who is very well informed? 

Thank you

Thank you for this information.

I don't want to put myself through the Leukine treatment if it is ineffective or worst can cause more harm by making tumors.

Since I am NED and there are no approved blood tests to detect any remaining MEL cells, I am at a loss for what to do on a preventative basis. I'd rather be proactive then wait and see.

Most trials seem to be for measurable disease but I will continue to research.

I am going to have the pathologist test for the Braf mutation and NRAS mutation as these were not completed. 

Are you in the medical field or just a patient who is very well informed? 

Thank you

Thank you for this information.

I don't want to put myself through the Leukine treatment if it is ineffective or worst can cause more harm by making tumors.

Since I am NED and there are no approved blood tests to detect any remaining MEL cells, I am at a loss for what to do on a preventative basis. I'd rather be proactive then wait and see.

Most trials seem to be for measurable disease but I will continue to research.

I am going to have the pathologist test for the Braf mutation and NRAS mutation as these were not completed. 

Are you in the medical field or just a patient who is very well informed? 

Thank you