Forum Replies Created
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- February 6, 2014 at 12:09 am
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
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- February 6, 2014 at 12:09 am
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
-
- February 6, 2014 at 12:09 am
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
-
- February 20, 2014 at 3:28 pm
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
-
- February 20, 2014 at 3:28 pm
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
-
- February 20, 2014 at 3:28 pm
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
-
- February 20, 2014 at 3:00 pm
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
-
- February 20, 2014 at 3:00 pm
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
-
- February 20, 2014 at 3:00 pm
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
-
- September 18, 2013 at 4:15 pm
I have been reading up on your case as mine is so similar. Initial diagnosis July 2013 cyst on back. Insisted on seeing dermatologist again two weeks later. Attempt to drain found pigmented soft tissue so had punch biopsy. Path report metastatic malignant melanoma. No primary site found. Pet/CT scan normal. Bloodwork normal. MRI of brain normal. Eye exam normal. Surgery August 2013. Unable to locate sentinel node. Clear margins.
Local oncologist recommends Leukine. Second opinion Dr Kirkwood at UPMC recommends participation in study comparing Interferon, low/high dosages of Ipilimumab.
Now I have discovered on this forum and others that perhaps I had primary dermal melanoma,
Looking for any information. Thank you
-
- September 18, 2013 at 4:15 pm
I have been reading up on your case as mine is so similar. Initial diagnosis July 2013 cyst on back. Insisted on seeing dermatologist again two weeks later. Attempt to drain found pigmented soft tissue so had punch biopsy. Path report metastatic malignant melanoma. No primary site found. Pet/CT scan normal. Bloodwork normal. MRI of brain normal. Eye exam normal. Surgery August 2013. Unable to locate sentinel node. Clear margins.
Local oncologist recommends Leukine. Second opinion Dr Kirkwood at UPMC recommends participation in study comparing Interferon, low/high dosages of Ipilimumab.
Now I have discovered on this forum and others that perhaps I had primary dermal melanoma,
Looking for any information. Thank you
-
- September 18, 2013 at 4:15 pm
I have been reading up on your case as mine is so similar. Initial diagnosis July 2013 cyst on back. Insisted on seeing dermatologist again two weeks later. Attempt to drain found pigmented soft tissue so had punch biopsy. Path report metastatic malignant melanoma. No primary site found. Pet/CT scan normal. Bloodwork normal. MRI of brain normal. Eye exam normal. Surgery August 2013. Unable to locate sentinel node. Clear margins.
Local oncologist recommends Leukine. Second opinion Dr Kirkwood at UPMC recommends participation in study comparing Interferon, low/high dosages of Ipilimumab.
Now I have discovered on this forum and others that perhaps I had primary dermal melanoma,
Looking for any information. Thank you
-