› Forums › General Melanoma Community › Nodular Melanoma
- This topic has 15 replies, 7 voices, and was last updated 9 years, 6 months ago by
Debbieamccoy.
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- March 22, 2011 at 12:06 pm
Yesterday I received my pathology report from the surgery I had a month ago. I have a nodular melanoma 22MM deep, ulcerated with 1 lymph node out of 19 positive for melanoma. That being said, I'm relieved that only 1 lymph node was involved, but now, I'm VERY concerned with how deep it is. My mitotic value is surprisingly low (1) which is rare for a deep tumour. I'm also currently NED as per PET scan results.
Yesterday I received my pathology report from the surgery I had a month ago. I have a nodular melanoma 22MM deep, ulcerated with 1 lymph node out of 19 positive for melanoma. That being said, I'm relieved that only 1 lymph node was involved, but now, I'm VERY concerned with how deep it is. My mitotic value is surprisingly low (1) which is rare for a deep tumour. I'm also currently NED as per PET scan results.
Anyway, is there anyone out there whose had a deep tumour or nodular melanoma with similar characteristics? Everything I read about this melanoma is BAD and I know the prognosis is BAD, so I'm really hoping there is someone out there who has beaten the statistics. I'm also wondering if it's do deep, does it even matter how many lymph nodes are involved.
I'm now deciding between Interferon or hoping this Ipilumumab gets approved so I can get get myself over to the U.S. for treatment. Any advice, any help? I've got a 16 month old daughter, so my goal is to keep this away for as long as possible.
P.S I must thank my dermatologist who LAST September told me it was a sebaceous cyst!
Thanks!
Lisa
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- March 22, 2011 at 12:42 pm
Lisa,
When I last talked to my mel specialist about Ipi he led me to believe that when approved, at least at first it would only be for unresected melanoma (I think he said stage IV also but not positive about that). You might want to check on my facts but I didn't want you planning on something that might not be possible. I'm wondering if maybe they will keep the stage 3 resected trials.
Your primary was very deep! However, I think once it's gone past that stage into the lymph nodes the depth no longer is the concern since it has spread. That's horrible that you were told it was a sebaceous cyst! There are way to many posts on here of misdiagnosis!!
Stay NED!
Linda
Stage IV since 06 Stable
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- March 22, 2011 at 12:42 pm
Lisa,
When I last talked to my mel specialist about Ipi he led me to believe that when approved, at least at first it would only be for unresected melanoma (I think he said stage IV also but not positive about that). You might want to check on my facts but I didn't want you planning on something that might not be possible. I'm wondering if maybe they will keep the stage 3 resected trials.
Your primary was very deep! However, I think once it's gone past that stage into the lymph nodes the depth no longer is the concern since it has spread. That's horrible that you were told it was a sebaceous cyst! There are way to many posts on here of misdiagnosis!!
Stay NED!
Linda
Stage IV since 06 Stable
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- March 22, 2011 at 2:19 pm
Lisa,
I had nodular Melanoma 4.5 mm deep with 9 nodes+. You live just north of me across the Lake.
If you want to talk, conact me on facebook or Melanoma Missionary.
Melanoma and the Magic Bullet (Monclonal antibodies)
http://www.box.net/shared/kjgr6dkztj
Warm Regards,
Jimmy B
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- March 22, 2011 at 2:19 pm
Lisa,
I had nodular Melanoma 4.5 mm deep with 9 nodes+. You live just north of me across the Lake.
If you want to talk, conact me on facebook or Melanoma Missionary.
Melanoma and the Magic Bullet (Monclonal antibodies)
http://www.box.net/shared/kjgr6dkztj
Warm Regards,
Jimmy B
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- March 22, 2011 at 4:33 pm
Hi Lisa,
I also had nodular melanoma. Mine was 6.9 mm and another 2.8 mm was removed during wide excision. I also had one positive node. I decided not to do any treatment after my lymph node dissection but my daughter was 20. If she had been younger or I'd known about options besides interferon, I probably would have considered treatment. I wasn't impressed with interferon in terms of improving chances and also because of side effects without much benefit but that's an individual choice and many on this site have done interferon. I have gone 6 years now without a recurrence. In your situation, I would definitely be looking into Ipilumumab trials, although I don't know if there are any currently enrolling. There are others who post here (or used to ) with very deep primaries who haven't had any further spread of melanoma. I'll keep everything crossed that you will be one of them.
Best of luck, Carver
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- March 22, 2011 at 4:33 pm
Hi Lisa,
I also had nodular melanoma. Mine was 6.9 mm and another 2.8 mm was removed during wide excision. I also had one positive node. I decided not to do any treatment after my lymph node dissection but my daughter was 20. If she had been younger or I'd known about options besides interferon, I probably would have considered treatment. I wasn't impressed with interferon in terms of improving chances and also because of side effects without much benefit but that's an individual choice and many on this site have done interferon. I have gone 6 years now without a recurrence. In your situation, I would definitely be looking into Ipilumumab trials, although I don't know if there are any currently enrolling. There are others who post here (or used to ) with very deep primaries who haven't had any further spread of melanoma. I'll keep everything crossed that you will be one of them.
Best of luck, Carver
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- March 22, 2011 at 5:04 pm
I am also NED and I had a 6.8 cent. melanoma in my right paratrachial lymph node…I have been NED for 1 year as of March 26…I just finished two trial rounds of 12 weeks each with MDX 1106 and 6 peptides down here at Moffitt in Tampa. I now will get a booster IV of MDX 1106 every 3 months for two years…I requested Dr Weber as my onc and I really think he is awesome. He had the only trial for NED and surgically resected melanoma at the time and I do not regret it for one minute…
you can also read about me and the trial at http://www.gentlewinds.org…..I believe it is still open….I think if I didn't do something I would not be NED now…Lynn
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- March 22, 2011 at 5:04 pm
I am also NED and I had a 6.8 cent. melanoma in my right paratrachial lymph node…I have been NED for 1 year as of March 26…I just finished two trial rounds of 12 weeks each with MDX 1106 and 6 peptides down here at Moffitt in Tampa. I now will get a booster IV of MDX 1106 every 3 months for two years…I requested Dr Weber as my onc and I really think he is awesome. He had the only trial for NED and surgically resected melanoma at the time and I do not regret it for one minute…
you can also read about me and the trial at http://www.gentlewinds.org…..I believe it is still open….I think if I didn't do something I would not be NED now…Lynn
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- March 22, 2011 at 7:55 pm
Lisa – I'm Stage III and I also had a deep, nodular melanoma (9 mm) and I opted for BioChemotherapy (a regiment of chemo drugs and immune enhancing drugs like IL2 and Interferon). Please read my profile for details. I'm glad I did it. I had a small tumor that seemed to respond very well to the treatment. I don't know if it will make a long-term difference, but I'm hoping.
A word of caution: My very large lymph node that was filled with mel had "extra capillary" extensions (basiclly the mel had grown past the edge of the lymph node). Because of this, I had a tumor re-appear in my axillary region – even after surgery and radiation. Check your pathology report for this and make sure you're looking for something like that. Let me know if you have questions! – Shari
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- March 22, 2011 at 7:55 pm
Lisa – I'm Stage III and I also had a deep, nodular melanoma (9 mm) and I opted for BioChemotherapy (a regiment of chemo drugs and immune enhancing drugs like IL2 and Interferon). Please read my profile for details. I'm glad I did it. I had a small tumor that seemed to respond very well to the treatment. I don't know if it will make a long-term difference, but I'm hoping.
A word of caution: My very large lymph node that was filled with mel had "extra capillary" extensions (basiclly the mel had grown past the edge of the lymph node). Because of this, I had a tumor re-appear in my axillary region – even after surgery and radiation. Check your pathology report for this and make sure you're looking for something like that. Let me know if you have questions! – Shari
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- March 23, 2011 at 1:46 am
My late wife had a nodular melanoma that sounds very similar to yours. She
was diagnosed in early 2007 and treatment options were very limited at the
time. We decided against interferon therapy because of its questionable
benefits and significant side effects.There have been some big advances in melanoma research over the last few
years. The new treatments that are becoming available through clinical
trials are allowing some people in this forum the ability to have long
periods of stable disease or NED (no evidence of disease).I share your concerns about the depth of the tumor, so it is important to
find suitable clinical trials that will give you the chance to have access
to the latest therapies. Here is a link to the trials that are available:
http://www.clinicaltrials.gov/ct2/results/refine?term=melanomaHope this helps.
Frank
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- May 14, 2015 at 10:15 pm
I was diagnose last week with a clark IV and Brelows depth of 7 .00 mm
deep and pheripheral margins not involved
Lymphatic/ perineural/angi invasion not identified
Miotoic rate 5-10
Associated Melanocyctic nevi not identified
TIL not brisk
Ulceration preset
I see my oncologist and surgeon next week and trying to be optomistic, my family MD questions the Breslows depth.
Scared but not ready to buy the shovel
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- May 14, 2015 at 10:15 pm
I was diagnose last week with a clark IV and Brelows depth of 7 .00 mm
deep and pheripheral margins not involved
Lymphatic/ perineural/angi invasion not identified
Miotoic rate 5-10
Associated Melanocyctic nevi not identified
TIL not brisk
Ulceration preset
I see my oncologist and surgeon next week and trying to be optomistic, my family MD questions the Breslows depth.
Scared but not ready to buy the shovel
-
- May 14, 2015 at 10:15 pm
I was diagnose last week with a clark IV and Brelows depth of 7 .00 mm
deep and pheripheral margins not involved
Lymphatic/ perineural/angi invasion not identified
Miotoic rate 5-10
Associated Melanocyctic nevi not identified
TIL not brisk
Ulceration preset
I see my oncologist and surgeon next week and trying to be optomistic, my family MD questions the Breslows depth.
Scared but not ready to buy the shovel
-
- March 23, 2011 at 1:46 am
My late wife had a nodular melanoma that sounds very similar to yours. She
was diagnosed in early 2007 and treatment options were very limited at the
time. We decided against interferon therapy because of its questionable
benefits and significant side effects.There have been some big advances in melanoma research over the last few
years. The new treatments that are becoming available through clinical
trials are allowing some people in this forum the ability to have long
periods of stable disease or NED (no evidence of disease).I share your concerns about the depth of the tumor, so it is important to
find suitable clinical trials that will give you the chance to have access
to the latest therapies. Here is a link to the trials that are available:
http://www.clinicaltrials.gov/ct2/results/refine?term=melanomaHope this helps.
Frank
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Tagged: cutaneous melanoma
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