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- This topic has 21 replies, 4 voices, and was last updated 11 years ago by Colleen66.
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- May 12, 2013 at 12:45 pm
Hello….I am new to the bulletin board and have been reading through posted topics, not knowing exactly where or how to begin, Knowing that much detailed information is needed, I hope I have included all that's important. We are at a point of not knowing which of the options given are the right to choose….any info would be greatly appreciated.
Hello….I am new to the bulletin board and have been reading through posted topics, not knowing exactly where or how to begin, Knowing that much detailed information is needed, I hope I have included all that's important. We are at a point of not knowing which of the options given are the right to choose….any info would be greatly appreciated.
Approximately 6 weeks ago, my fiance (age 63) had a "mole" removed from his neck, just above the shoulder line. Phone call from PMD came and stated it was "malignant melanoma" Seen by general surgeon the following week and his affect just didn't sit well with me and immediately know a second option was going to be obtained. Upon receiving the path report it stated the following: Malignant Melanoma, Nodular, 2.5mm in thickness extending to the base of the biopsy with a separate portion of tissue showing a mm thick portion of melanoma. Greater than 10 mitosis per millimeter squared. mm of ulceration. Melanoma seen in vascular spaces. Clark level IV (deeper invasion cannot be excluded) No perineural invasion. Tumor infiltrating lymphocytes – non brisk. cautery effect. incompletely excised.
Consulted with a melanoma surgical oncologist at the James Cancer-Research Institute @ OSU and surgery was scheduled two weeks later for a wide excision and sentinel node biopsy. Day of the surgery, lymph node mapping performed and 2 sentinel nodes were removed. Of the two, one showed metastatic malignant melanoma. Of the five supraclavicular nodes, none showed evidence. The path report also states that the largest focus of metastatic malignant melanoma measures approx 3mm in greatest dimension for the positive sentinel node. Lesional cells are present in the lymph node parenchyma and capsular sinus. No extracapsular extension is identified. An incidental predominantly intradermal melanocytic nevus is present in the excised site. The positive node stained positive for Melan-A, HMB-45 and Tyrosinase.
The surgical oncologist set up an appointment with a medical oncologist for evaluation of systemic therapy options this Tuesday. She gave two options…the first was completion of node dissection vs. MSLT2 participation. She stated that a full body ct would be scheduled….pet scan is not done because she said these are microscopic cells and would not be picked up. She also mentioned that with treatment option 1, the node dissection, the pharmacological treatment is interferon, which is not her choice because of the severe side effects.
We are trying to process and fully understand what lies ahead and what is the right decision moving forward. I sincerely appreciate any information based on the results above.
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- May 12, 2013 at 1:53 pm
Hi JoWen,
So sorry you've had to join the board but welcome all the same. I'm also a patient at the James. My primary was on my leg, sentinel node positive and encapsulated. Had partial lymphendectomy (7) nodes. All negative. My Surgeon also doesn't like interferon but when I saw the medical Oncologist I choose the interferon because I felt I had to do something. I lasted for 3 weeks of the high dose and the doctor stopped it because of serious side effects. I have a couple of spots in my lung and something undiagnosable on my liver. It's the watch and wait stage. I'm pretty comfortable at this point. I recovered well from the interferon and am able to start excersing regularly. My medical Oncologist told me that eating a fish, chicken or beef daily along with 3 vegies, 3 fruits a day will do what interferon might have done. My diet is excellent now. I have good energy and anxiety is manageable. Stage III is difficult. You feel like you have to activily fight when actually it's waiting. You'll be getting scans and blood work regularly. At the James, we are lucky, we get all lab and scan results back the same day with a couple of exceptions.
The James is a great place to be. I have complete faith in them to stay on top of my situation and act fast if my situation should change.
I hope this goes well for you. Make your decisions and no regrets. Ask as many questions as you need. I have more detailed info in my profile if you want to look.
Good luck to you and hubs.
Colleen
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- May 12, 2013 at 1:53 pm
Hi JoWen,
So sorry you've had to join the board but welcome all the same. I'm also a patient at the James. My primary was on my leg, sentinel node positive and encapsulated. Had partial lymphendectomy (7) nodes. All negative. My Surgeon also doesn't like interferon but when I saw the medical Oncologist I choose the interferon because I felt I had to do something. I lasted for 3 weeks of the high dose and the doctor stopped it because of serious side effects. I have a couple of spots in my lung and something undiagnosable on my liver. It's the watch and wait stage. I'm pretty comfortable at this point. I recovered well from the interferon and am able to start excersing regularly. My medical Oncologist told me that eating a fish, chicken or beef daily along with 3 vegies, 3 fruits a day will do what interferon might have done. My diet is excellent now. I have good energy and anxiety is manageable. Stage III is difficult. You feel like you have to activily fight when actually it's waiting. You'll be getting scans and blood work regularly. At the James, we are lucky, we get all lab and scan results back the same day with a couple of exceptions.
The James is a great place to be. I have complete faith in them to stay on top of my situation and act fast if my situation should change.
I hope this goes well for you. Make your decisions and no regrets. Ask as many questions as you need. I have more detailed info in my profile if you want to look.
Good luck to you and hubs.
Colleen
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- May 12, 2013 at 1:53 pm
Hi JoWen,
So sorry you've had to join the board but welcome all the same. I'm also a patient at the James. My primary was on my leg, sentinel node positive and encapsulated. Had partial lymphendectomy (7) nodes. All negative. My Surgeon also doesn't like interferon but when I saw the medical Oncologist I choose the interferon because I felt I had to do something. I lasted for 3 weeks of the high dose and the doctor stopped it because of serious side effects. I have a couple of spots in my lung and something undiagnosable on my liver. It's the watch and wait stage. I'm pretty comfortable at this point. I recovered well from the interferon and am able to start excersing regularly. My medical Oncologist told me that eating a fish, chicken or beef daily along with 3 vegies, 3 fruits a day will do what interferon might have done. My diet is excellent now. I have good energy and anxiety is manageable. Stage III is difficult. You feel like you have to activily fight when actually it's waiting. You'll be getting scans and blood work regularly. At the James, we are lucky, we get all lab and scan results back the same day with a couple of exceptions.
The James is a great place to be. I have complete faith in them to stay on top of my situation and act fast if my situation should change.
I hope this goes well for you. Make your decisions and no regrets. Ask as many questions as you need. I have more detailed info in my profile if you want to look.
Good luck to you and hubs.
Colleen
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- May 12, 2013 at 3:44 pm
Dear Colleen,
Thank you for sharing your experience and high recomendation on the James. Yes, we also have had nothing but excellent experiences there, and have the highest regards for all those who have recently touched upon our life.
We are anxious to meet with the medical oncologist next week and learn more of what will be ahead.
Thank you, and my very best wishes and prayers are with you.
Wendy
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- May 12, 2013 at 3:44 pm
Dear Colleen,
Thank you for sharing your experience and high recomendation on the James. Yes, we also have had nothing but excellent experiences there, and have the highest regards for all those who have recently touched upon our life.
We are anxious to meet with the medical oncologist next week and learn more of what will be ahead.
Thank you, and my very best wishes and prayers are with you.
Wendy
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- May 12, 2013 at 3:44 pm
Dear Colleen,
Thank you for sharing your experience and high recomendation on the James. Yes, we also have had nothing but excellent experiences there, and have the highest regards for all those who have recently touched upon our life.
We are anxious to meet with the medical oncologist next week and learn more of what will be ahead.
Thank you, and my very best wishes and prayers are with you.
Wendy
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- May 12, 2013 at 7:27 pm
Colleen,
Sorry to hear about your fiance. I am stage 3a, which is what he is right now, and I have been NED (No Evidence of Disease) for 3 years. I chose to have a complete lymph node dysction and then be monitored closely after that. So far so good! One thing I do have to mention is that nodular melanoma is a little bit different critter. While I did have a fairly deep (3.7 mm) tumor and a higher mitosis, I believe it would be to your benefit to make sure you are with someone who understands nodular melanoma or maybe even consider a trial.
Please be patient with the board, weekends are usually slow as people go about their lives and I suspect this Sunday will be even more so.
Good Luck and keep in touch,
Mary
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- May 12, 2013 at 8:08 pm
Thank you Mary and I am so happy for you on your NED status…I'm not sure wht happend when I put in the info on the path report, but it was 4mm depth, and it was received in two pieces. We are truely comfortable and have faith in the doctors at the James….but agree … to ask….to question….until it's understood.
Regards,
Wendy
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- May 12, 2013 at 8:08 pm
Thank you Mary and I am so happy for you on your NED status…I'm not sure wht happend when I put in the info on the path report, but it was 4mm depth, and it was received in two pieces. We are truely comfortable and have faith in the doctors at the James….but agree … to ask….to question….until it's understood.
Regards,
Wendy
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- May 12, 2013 at 8:08 pm
Thank you Mary and I am so happy for you on your NED status…I'm not sure wht happend when I put in the info on the path report, but it was 4mm depth, and it was received in two pieces. We are truely comfortable and have faith in the doctors at the James….but agree … to ask….to question….until it's understood.
Regards,
Wendy
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- May 12, 2013 at 7:27 pm
Colleen,
Sorry to hear about your fiance. I am stage 3a, which is what he is right now, and I have been NED (No Evidence of Disease) for 3 years. I chose to have a complete lymph node dysction and then be monitored closely after that. So far so good! One thing I do have to mention is that nodular melanoma is a little bit different critter. While I did have a fairly deep (3.7 mm) tumor and a higher mitosis, I believe it would be to your benefit to make sure you are with someone who understands nodular melanoma or maybe even consider a trial.
Please be patient with the board, weekends are usually slow as people go about their lives and I suspect this Sunday will be even more so.
Good Luck and keep in touch,
Mary
-
- May 12, 2013 at 7:27 pm
Colleen,
Sorry to hear about your fiance. I am stage 3a, which is what he is right now, and I have been NED (No Evidence of Disease) for 3 years. I chose to have a complete lymph node dysction and then be monitored closely after that. So far so good! One thing I do have to mention is that nodular melanoma is a little bit different critter. While I did have a fairly deep (3.7 mm) tumor and a higher mitosis, I believe it would be to your benefit to make sure you are with someone who understands nodular melanoma or maybe even consider a trial.
Please be patient with the board, weekends are usually slow as people go about their lives and I suspect this Sunday will be even more so.
Good Luck and keep in touch,
Mary
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- May 13, 2013 at 3:58 am
My daughter, who is 24, also had nodular malignant melanoma on her right neck. Started with a mole that had noticeable changes. Hers was 3.5 mm in depth and initial wide excision and SNL were negative for melanoma. Staged at IIb at that time with no follow up recommended. Within a month she felt an enlarged lymph node in the same area. Referred to ENT specializing in oncology for second surgery of lymph node dissection and of the 26 nodes removed only the one we knew about was positive for melanoma. Now stage IIIb. Referred to melanomal oncologist and she was offerred biochemotherapy as, many say that, Interferon on it's own has not been proven to be effective. Radiation was not offerred as the doctor said there is nothing to measure to see if it is working. Biochemotherapy is a combination of 5 drugs – 3 chemotherapy and 2 immunotherapy (Interleukin 2 and Interferon). It is given for stage III patients as adjuvant or preventive treatment in a series of 3 cycles. Each cycle involves a 5 day stay in the hospital and then a 2 week recovery period. She was treated at Kaiser in Riverside under Dr. Gailani. You might ask about it to see what his doctor thinks. She finished a month ago and her most recent PET scan continued to be completely clean. She returned to work 2 weeks ago and is feeling well. Best of luck to you and all I can recommend is to do the research and go with what makes sense for you.
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- May 13, 2013 at 3:58 am
My daughter, who is 24, also had nodular malignant melanoma on her right neck. Started with a mole that had noticeable changes. Hers was 3.5 mm in depth and initial wide excision and SNL were negative for melanoma. Staged at IIb at that time with no follow up recommended. Within a month she felt an enlarged lymph node in the same area. Referred to ENT specializing in oncology for second surgery of lymph node dissection and of the 26 nodes removed only the one we knew about was positive for melanoma. Now stage IIIb. Referred to melanomal oncologist and she was offerred biochemotherapy as, many say that, Interferon on it's own has not been proven to be effective. Radiation was not offerred as the doctor said there is nothing to measure to see if it is working. Biochemotherapy is a combination of 5 drugs – 3 chemotherapy and 2 immunotherapy (Interleukin 2 and Interferon). It is given for stage III patients as adjuvant or preventive treatment in a series of 3 cycles. Each cycle involves a 5 day stay in the hospital and then a 2 week recovery period. She was treated at Kaiser in Riverside under Dr. Gailani. You might ask about it to see what his doctor thinks. She finished a month ago and her most recent PET scan continued to be completely clean. She returned to work 2 weeks ago and is feeling well. Best of luck to you and all I can recommend is to do the research and go with what makes sense for you.
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- May 14, 2013 at 9:39 am
Thank you Kathy… and my continued best wishes for your daughters NED status. My question is, with the Biochemotherapy, how many cycles are involved? Right now the one study option which was offered is surgery vs observation. I have been told by some that there is not enough evidence that radical node dissection increases life expectancy and is becoming questionable in standard of care. So very confusing!!
Seeing the medical oncologist today…will see what his plan and/or recommendation will be.
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- May 14, 2013 at 9:39 am
Thank you Kathy… and my continued best wishes for your daughters NED status. My question is, with the Biochemotherapy, how many cycles are involved? Right now the one study option which was offered is surgery vs observation. I have been told by some that there is not enough evidence that radical node dissection increases life expectancy and is becoming questionable in standard of care. So very confusing!!
Seeing the medical oncologist today…will see what his plan and/or recommendation will be.
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- May 14, 2013 at 9:39 am
Thank you Kathy… and my continued best wishes for your daughters NED status. My question is, with the Biochemotherapy, how many cycles are involved? Right now the one study option which was offered is surgery vs observation. I have been told by some that there is not enough evidence that radical node dissection increases life expectancy and is becoming questionable in standard of care. So very confusing!!
Seeing the medical oncologist today…will see what his plan and/or recommendation will be.
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- May 13, 2013 at 3:58 am
My daughter, who is 24, also had nodular malignant melanoma on her right neck. Started with a mole that had noticeable changes. Hers was 3.5 mm in depth and initial wide excision and SNL were negative for melanoma. Staged at IIb at that time with no follow up recommended. Within a month she felt an enlarged lymph node in the same area. Referred to ENT specializing in oncology for second surgery of lymph node dissection and of the 26 nodes removed only the one we knew about was positive for melanoma. Now stage IIIb. Referred to melanomal oncologist and she was offerred biochemotherapy as, many say that, Interferon on it's own has not been proven to be effective. Radiation was not offerred as the doctor said there is nothing to measure to see if it is working. Biochemotherapy is a combination of 5 drugs – 3 chemotherapy and 2 immunotherapy (Interleukin 2 and Interferon). It is given for stage III patients as adjuvant or preventive treatment in a series of 3 cycles. Each cycle involves a 5 day stay in the hospital and then a 2 week recovery period. She was treated at Kaiser in Riverside under Dr. Gailani. You might ask about it to see what his doctor thinks. She finished a month ago and her most recent PET scan continued to be completely clean. She returned to work 2 weeks ago and is feeling well. Best of luck to you and all I can recommend is to do the research and go with what makes sense for you.
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Tagged: cutaneous melanoma
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