› Forums › General Melanoma Community › 3rd primary melanoma being referred to Duke
- This topic has 40 replies, 9 voices, and was last updated 13 years, 1 month ago by
carolegarry.
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- December 11, 2010 at 6:24 am
Hello everyone, this week has been crazy!!! Ill give you a bit of my hx: in 2006 I was diagnosed with my first primary melanoma stage 3. It was a Clarks level IV with sentinel node (+). I did interferon treatment 35wks shy of 11 mo. July 2010 I was diagnosed with 2nd primary Mel Clarks level 2 it was thin so no SNB just WLE. Now here we r in dec 2010 and I have 3rd primary Mel this report says Clarks level IV at least and probably will have residual when WLE is done. The problem is I already had big surgery to lt groin in 2006 and this new primary in lt lower back.Hello everyone, this week has been crazy!!! Ill give you a bit of my hx: in 2006 I was diagnosed with my first primary melanoma stage 3. It was a Clarks level IV with sentinel node (+). I did interferon treatment 35wks shy of 11 mo. July 2010 I was diagnosed with 2nd primary Mel Clarks level 2 it was thin so no SNB just WLE. Now here we r in dec 2010 and I have 3rd primary Mel this report says Clarks level IV at least and probably will have residual when WLE is done. The problem is I already had big surgery to lt groin in 2006 and this new primary in lt lower back. Surgeon is referring me to Duke because he thinks I will need LND because where lymphatics were disrupted during 1st surgery a sentinel node can not be detected. He put me thru lymphoscintogram and found that lesion drains to both groins nodes. Has anyone else experienced this and what should I expect from node dissection to both groins. It’s been over a year since I’ve had a pet scan and makes me worry what could be going on inside my body. Anyone else going to Duke???? Who is the best surgeon for this??? Thank you all in advance I’m so scared:(
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- December 11, 2010 at 1:43 pm
Alicia,
I'm assuming you are from North Carolina if your being referred to Duke. What part of the state? I'm in Anderson SC which is just 19 miles into SC along 85 from the NC border.
I can't help you with Duke but I go to Carolina Medical Center in Charlotte. Dr. Richard White is not only the head of oncology surgery but also an immunologist. His nurse has been truly and angel sent to me when needed. Charlie S. gave me his name (that's who he has gone to for years). Between Duke, Chapel Hill and CMC you have options for great medical care! My melanoma specialist at CMC is Dr. Asmin Amin. The two Doctors work together are are quite a team.
I've had 6 primaries so I do understand your stress. SEnding hugs,
Linda
Stage IV since 2006
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- December 11, 2010 at 2:26 pm
Thank you Linda for responding. I actually live in ashland ky so I do not live in NC however, we do not have a melanoma clinic in this area. There is a facility at Univ of Louisville ky that treats melanoma patients but my Dr here who is referring me to Duke hasn't heard good things about their program. I think Duke is 4-5 hrs from here but if they are good then thatsn where I want to go.
Wow, you have had 6 primaries!!!! They have treated me like an anomaly here and are just scratching their heads as to why I have 3 primaries. Which primary to do think led to your stage 4 melanoma? My derm said she has had only one patient other than me with more than one primary mel and he is in his 70's (I'm 28 and was 24 when 1st diagnosed).
Did you have to have Lymph nodes removed with all the primaries??? sorry if i'm asking too many questions:/ I'm just concerned about lymph edema. The dr here in ky told me that since i've already had surgery to my left groin with snb and now this new mel is on left side of back then he wouldn't be able to find a sentinel node and all nodes would have to be removed. How did they go about all this with you if you dont mind me asking. Thank you so much as you have been so helpful….also if you dont mind me asking…..what treatements did you or are you doing???
Thank you,
Alicia stage 3 2006
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- December 11, 2010 at 3:46 pm
I'm no help on your current predicament, but I, too, have had 3 primaries. I have also tested positive for a melanoma genetic defect (p16 or CDKN2A). I am adopted so don't know my medical history, but having 3 (not 1 or not 2) primaries does put you at higher risk for a genetic defect. Also being diagnosed younger increases the risk. (I was originally diagnosed at age 29). You might be an anomaly to your current doctor, but you're not alone. There are plenty of us out here. About 8% of the melanoma population have more than one primary.
Best wishes,
Janner
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- December 11, 2010 at 3:46 pm
I'm no help on your current predicament, but I, too, have had 3 primaries. I have also tested positive for a melanoma genetic defect (p16 or CDKN2A). I am adopted so don't know my medical history, but having 3 (not 1 or not 2) primaries does put you at higher risk for a genetic defect. Also being diagnosed younger increases the risk. (I was originally diagnosed at age 29). You might be an anomaly to your current doctor, but you're not alone. There are plenty of us out here. About 8% of the melanoma population have more than one primary.
Best wishes,
Janner
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- December 11, 2010 at 3:54 pm
Alicia,
I did a mapquest from Ashland to different hospitals that have melanoma specialists. I hope someone corrects me if I'm wrong about what I'm about to say. I know that we have had in the past someone who was treated at Duke with IL2 and is doing wonderfully!! Recently I don't think we have had anyone. Many of us went to a conference last year at Chapel Hill and I picked up that Duke's specialist is now there. I know your looking for an excellent surgeon but sometimes you need to look for an entire package of specialist and surgeon. Here is the list of hospitals (besides Duke) that I know have specialists and are within the same time range (you can put in specifically where you live to get more details).
Chapel Hill, Nashville Tenn, Pittsburgh Pa, Carolina Medical Center and UVA in Charlottesville Va.
My history is long. Please look at my Patnet. I know it doesn't have my latest info from this week, maybe not from my last surgery either but it will give you an idea. Basically tumor reappeared 27 years later by scar line of my first mel. I've been chasing it every since then. One trial of GMCSF in 06. Since then only surgeries. This is the first time that it looks like I'll be going systemic (hopefully there will be no growth by my next scans!!). Just recently is the first time it showed up in my nodes. So I'm one of the 8% that have multiple primaries and one of the 8% that has had the cells travel in the blood line. 4.5 years at stage IV, hoping for at least another 10 or more!!!
You might want to e-mail Tim [email protected] and ask him for names of Doctors at any of these hospitals. He's the executive director here at the MRF and goes to the conferences and has heard many patients stories.
Linda
[email protected] feel free to e-mail me!
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- December 11, 2010 at 6:06 pm
Linda,
Do you think UNC is better than Duke or about the same??? My Dr is calling for the referral this monday and I just want to try to go to the best place. Thank you all so much for the information. really no one else truely knows how this feels but you who also battle this disease.
Alicia
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- December 11, 2010 at 6:06 pm
Linda,
Do you think UNC is better than Duke or about the same??? My Dr is calling for the referral this monday and I just want to try to go to the best place. Thank you all so much for the information. really no one else truely knows how this feels but you who also battle this disease.
Alicia
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- December 11, 2010 at 6:48 pm
I haven't been to either place so I really don't know about the reputations. One consideration is will both places accept your insurance. Another is who can get you in faster – especially with the holidays. I hate to say this but I doubt this will be done as quickly as you want. I always feel as if I'm hurry up and then wait mode.
I really would e-mail Tim and ask him for suggestions. Sorry I couldn't be more help! We do have several peole online from the NC area but with this being the weekend and also close to Christmas I don't know how many are actually online. I am going to try and find the e-mail for one person that has been treated at UNC and see if she will get in touch with you.
Linda
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- December 11, 2010 at 6:48 pm
I haven't been to either place so I really don't know about the reputations. One consideration is will both places accept your insurance. Another is who can get you in faster – especially with the holidays. I hate to say this but I doubt this will be done as quickly as you want. I always feel as if I'm hurry up and then wait mode.
I really would e-mail Tim and ask him for suggestions. Sorry I couldn't be more help! We do have several peole online from the NC area but with this being the weekend and also close to Christmas I don't know how many are actually online. I am going to try and find the e-mail for one person that has been treated at UNC and see if she will get in touch with you.
Linda
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- December 11, 2010 at 3:54 pm
Alicia,
I did a mapquest from Ashland to different hospitals that have melanoma specialists. I hope someone corrects me if I'm wrong about what I'm about to say. I know that we have had in the past someone who was treated at Duke with IL2 and is doing wonderfully!! Recently I don't think we have had anyone. Many of us went to a conference last year at Chapel Hill and I picked up that Duke's specialist is now there. I know your looking for an excellent surgeon but sometimes you need to look for an entire package of specialist and surgeon. Here is the list of hospitals (besides Duke) that I know have specialists and are within the same time range (you can put in specifically where you live to get more details).
Chapel Hill, Nashville Tenn, Pittsburgh Pa, Carolina Medical Center and UVA in Charlottesville Va.
My history is long. Please look at my Patnet. I know it doesn't have my latest info from this week, maybe not from my last surgery either but it will give you an idea. Basically tumor reappeared 27 years later by scar line of my first mel. I've been chasing it every since then. One trial of GMCSF in 06. Since then only surgeries. This is the first time that it looks like I'll be going systemic (hopefully there will be no growth by my next scans!!). Just recently is the first time it showed up in my nodes. So I'm one of the 8% that have multiple primaries and one of the 8% that has had the cells travel in the blood line. 4.5 years at stage IV, hoping for at least another 10 or more!!!
You might want to e-mail Tim [email protected] and ask him for names of Doctors at any of these hospitals. He's the executive director here at the MRF and goes to the conferences and has heard many patients stories.
Linda
[email protected] feel free to e-mail me!
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- December 11, 2010 at 2:26 pm
Thank you Linda for responding. I actually live in ashland ky so I do not live in NC however, we do not have a melanoma clinic in this area. There is a facility at Univ of Louisville ky that treats melanoma patients but my Dr here who is referring me to Duke hasn't heard good things about their program. I think Duke is 4-5 hrs from here but if they are good then thatsn where I want to go.
Wow, you have had 6 primaries!!!! They have treated me like an anomaly here and are just scratching their heads as to why I have 3 primaries. Which primary to do think led to your stage 4 melanoma? My derm said she has had only one patient other than me with more than one primary mel and he is in his 70's (I'm 28 and was 24 when 1st diagnosed).
Did you have to have Lymph nodes removed with all the primaries??? sorry if i'm asking too many questions:/ I'm just concerned about lymph edema. The dr here in ky told me that since i've already had surgery to my left groin with snb and now this new mel is on left side of back then he wouldn't be able to find a sentinel node and all nodes would have to be removed. How did they go about all this with you if you dont mind me asking. Thank you so much as you have been so helpful….also if you dont mind me asking…..what treatements did you or are you doing???
Thank you,
Alicia stage 3 2006
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- December 11, 2010 at 1:43 pm
Alicia,
I'm assuming you are from North Carolina if your being referred to Duke. What part of the state? I'm in Anderson SC which is just 19 miles into SC along 85 from the NC border.
I can't help you with Duke but I go to Carolina Medical Center in Charlotte. Dr. Richard White is not only the head of oncology surgery but also an immunologist. His nurse has been truly and angel sent to me when needed. Charlie S. gave me his name (that's who he has gone to for years). Between Duke, Chapel Hill and CMC you have options for great medical care! My melanoma specialist at CMC is Dr. Asmin Amin. The two Doctors work together are are quite a team.
I've had 6 primaries so I do understand your stress. SEnding hugs,
Linda
Stage IV since 2006
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- December 11, 2010 at 4:38 pm
Sorry about your 3 primaries. It sounds like all your three melanomas were amelanotic and looked unusual. Could you describe them to our knowledge, please? Thanks a lot!
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- December 11, 2010 at 6:15 pm
Thank you and yes all my primaries were Amelanotic, which does make it difficult to diagnose. The first primary was on my left hip and it was amelanotic nodular melanoma clarks level IV with (+) sentinel node. This was a dome shaped bump more oval shaped and was a reddish color. It was scaley on top and began to bleed and scab over. I did HD interferon for 1 mo and subq inj the remainer of the treatment. (the mel occuring during the pregnancy of my first child) . After my second child was 12 mo old I was diagnosed with the 2nd primary melanoma which was on my RT shoulder and it was a more thin melanoma. It appeared like a red scaley pump that was itchy. The third primary that i'm dealing with right now is also amelanotic and appeared within a scar i had on my lt lower back since highschool. I noticed the scar was turning pink and became itchy and sore. My derm just recently biopsied two other lesion in close proximity to this recent primary to eval for satellite mets. These areas are smaller pinkish irritated bumps so she thought it would be best to biospy those as well.
I hope this helps you:)
Alicia
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- December 11, 2010 at 6:15 pm
Thank you and yes all my primaries were Amelanotic, which does make it difficult to diagnose. The first primary was on my left hip and it was amelanotic nodular melanoma clarks level IV with (+) sentinel node. This was a dome shaped bump more oval shaped and was a reddish color. It was scaley on top and began to bleed and scab over. I did HD interferon for 1 mo and subq inj the remainer of the treatment. (the mel occuring during the pregnancy of my first child) . After my second child was 12 mo old I was diagnosed with the 2nd primary melanoma which was on my RT shoulder and it was a more thin melanoma. It appeared like a red scaley pump that was itchy. The third primary that i'm dealing with right now is also amelanotic and appeared within a scar i had on my lt lower back since highschool. I noticed the scar was turning pink and became itchy and sore. My derm just recently biopsied two other lesion in close proximity to this recent primary to eval for satellite mets. These areas are smaller pinkish irritated bumps so she thought it would be best to biospy those as well.
I hope this helps you:)
Alicia
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- December 11, 2010 at 9:09 pm
Hi Alicia,
I had the groin LND (only on left side) at UNC in Chapel Hill, NC. My surgical oncologist at UNC is David Ollila. There are also people on this board who go to Duke. I think either place would be good. Both UNC and Duke have melanoma specialists.
Best of Luck, Carver
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- December 11, 2010 at 9:09 pm
Hi Alicia,
I had the groin LND (only on left side) at UNC in Chapel Hill, NC. My surgical oncologist at UNC is David Ollila. There are also people on this board who go to Duke. I think either place would be good. Both UNC and Duke have melanoma specialists.
Best of Luck, Carver
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- December 13, 2010 at 3:51 pm
I am Stage IIIB and am under the care of Dr Craig Slingluff at UVA in Charlottesville. He and his staff have been great. He is a surgical oncologist specializing in melanoma and head of immunology too. I had an axillary LND in July 2010 and am currently in the GSK DERMA trial also. If Charlottesville is easier, I would recommend them highly!
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- December 14, 2010 at 4:36 am
Did the surgical oncologist do your WLE too??? Linda advised mr to contact Tim with MRF and he really helped give me info about melanoma centers a bit closer to me. I just got referred today to vanderbilts melanoma sugical oncologist dr Kelly and I’ll be seeing dr sossman also. Thanks for that information and I hope you do amazing with your treatment:)Alicia
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- December 14, 2010 at 2:30 pm
I am an "unknown primary" so there was no WLE. Dr Slingluff did my axillary LND. I have heard great things about Vanderbilt. Best of luck. Don't hesitate to get a second opinion if you have any doubts. My local oncologist consulted with Vanderbilt and Duke about my case for me. They agreed with the treatment plan at UVA.
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- December 14, 2010 at 2:30 pm
I am an "unknown primary" so there was no WLE. Dr Slingluff did my axillary LND. I have heard great things about Vanderbilt. Best of luck. Don't hesitate to get a second opinion if you have any doubts. My local oncologist consulted with Vanderbilt and Duke about my case for me. They agreed with the treatment plan at UVA.
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- December 14, 2010 at 4:36 am
Did the surgical oncologist do your WLE too??? Linda advised mr to contact Tim with MRF and he really helped give me info about melanoma centers a bit closer to me. I just got referred today to vanderbilts melanoma sugical oncologist dr Kelly and I’ll be seeing dr sossman also. Thanks for that information and I hope you do amazing with your treatment:)Alicia
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- January 1, 2011 at 8:18 pm
Michelle,
My husband was dx in Nov with stage 3b. Amelanotic and unknown primary… presented with a swollen lymph node in his neck. negative PET scan, 32 nodes and parotid removed in SLND were all negative. He is now being offered Interferon but also we are waiting to hear if he qualifies for the GSK Derma trial. Could you tell me if you are experiencing any side effects after your injections. Wondering if you can tell if you are getting the drug or the placebo?
We should hear this week from GSK.
Kelly…. TJ's wife
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- March 25, 2011 at 4:48 am
Hi Kelly,
I just started on the DERMA trial, but, unfortunately did not have anysymptoms at all…thus am probably on the placebo. Is TJ having any symptoms from the IJs???? Thanks,
Carole
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- March 25, 2011 at 4:48 am
Hi Kelly,
I just started on the DERMA trial, but, unfortunately did not have anysymptoms at all…thus am probably on the placebo. Is TJ having any symptoms from the IJs???? Thanks,
Carole
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- January 1, 2011 at 8:18 pm
Michelle,
My husband was dx in Nov with stage 3b. Amelanotic and unknown primary… presented with a swollen lymph node in his neck. negative PET scan, 32 nodes and parotid removed in SLND were all negative. He is now being offered Interferon but also we are waiting to hear if he qualifies for the GSK Derma trial. Could you tell me if you are experiencing any side effects after your injections. Wondering if you can tell if you are getting the drug or the placebo?
We should hear this week from GSK.
Kelly…. TJ's wife
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- December 13, 2010 at 3:51 pm
I am Stage IIIB and am under the care of Dr Craig Slingluff at UVA in Charlottesville. He and his staff have been great. He is a surgical oncologist specializing in melanoma and head of immunology too. I had an axillary LND in July 2010 and am currently in the GSK DERMA trial also. If Charlottesville is easier, I would recommend them highly!
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- December 14, 2010 at 3:39 am
My father had acral lentiginous (sp?) melanoma on the bottom of his foot. His main physician was Dr. Jen Jen Yeh at UNC-Chapel Hill. He saw Dr. Douglas Tyler at Duke for an opinion regarding isolated limb infusion, which he turned out not to be a candidate for. There is a basic assumption in the Duke-UNC area that Duke generally treats cancer more aggressively than UNC. Our experience seemed to mirror that bias. In my father's case (85 years old, heart problems etc.), the less aggressive treatment seemed to be the right thing to do.
The reason I am saying this is, as Carver said, you have 2 excellent melanoma centers less than 10 miles from each other. That being the case, you might want to get an opinion from both. Also, they work together — sometimes UNC refers people to Duke if they have a particular treatment and vice versa. I think you will be in good hands!
Best wishes,
ellen
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- December 14, 2010 at 3:39 am
My father had acral lentiginous (sp?) melanoma on the bottom of his foot. His main physician was Dr. Jen Jen Yeh at UNC-Chapel Hill. He saw Dr. Douglas Tyler at Duke for an opinion regarding isolated limb infusion, which he turned out not to be a candidate for. There is a basic assumption in the Duke-UNC area that Duke generally treats cancer more aggressively than UNC. Our experience seemed to mirror that bias. In my father's case (85 years old, heart problems etc.), the less aggressive treatment seemed to be the right thing to do.
The reason I am saying this is, as Carver said, you have 2 excellent melanoma centers less than 10 miles from each other. That being the case, you might want to get an opinion from both. Also, they work together — sometimes UNC refers people to Duke if they have a particular treatment and vice versa. I think you will be in good hands!
Best wishes,
ellen
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