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Node results

› Forums › General Melanoma Community › Node results

  • Post
    • July 16, 2014 at 1:09 am
    5dives
    Participant

      Hello everyone,

      I'm just reaching out, mainly in case somebody has a tip or bright idea I should be moving forward with in the coming days and weeks. 

      I live in Chicago. My primary lesion was .81 mm, mitotic rate 1, Clark's level IV, superficial spreading.  I just had my wle / slnb on Thursday, and I'm recovering well at home.  They took only one node for biopsy after the radioactive dye procedure. 

      Results today tell me that the surrounding tissue removed with the wle was clear, but the node they took had a "small amount" of melanoma present.  I will get the more definite percentages after a final stain has been run. I will have those results on Thursday. 

      I have a few questions for the group.

      1. What is the path of melanoma after the nodes? In other words, if there's "only" cancer in one node and in no other nodes, does that mean it hasn't spread beyond the nodes? Do you have any thoughts on having the full inguinal node dissection or if it's not necessary if the scans are clear (brain, lungs, etc)? I do want to be agressive.

      2. My doctor is Joseph Clark at Loyola. I have posted about this before, because Dr. Clark works out of Loyola Medical Center, which is not a Center of Excellence, but I know he personally has a very good reputation for melanoma, and he is heading several clinical trials.  I do have access to Northwestern Memorial (Dr. Mary Martini) and University of Chicago (Dr. Thomas Gajewski), but going through the process of getting a second opinion from either of them would delay my scans, which I am eager to have.  I feel like maybe it's okay to have a great doctor in a lesser hospital, but I'm not sure.  I'm open to suggestions. 

      3. My understanding is that there are no "good" treatments for stage 3, and that if I hope to have treatment in order to be agressive, I'll need to seek a trial, and there aren't many for stage 3. Do I have that right? 

      Thank you in advance for any thoughts you may have, and feel free to ansI wer only the parts that interest you.  I put a lot of trust in the wisdom of this group.

      Best, 

      Elaine

    Viewing 14 reply threads
    • Replies
        • July 16, 2014 at 3:17 am
        ed williams
        Participant

          Hi Elaine, I will give you a couple of resources to get you started. Look up on youtube these two video from 2014 ASCO meeting. First one is title ASCO 2014. Dr. Wolchok is being interviewed in what is called ' the best of the day' it is under ( Imedex). Dr. Wolchok talks about several studies and one is about a clinical trial of stage 3 a,b,and c melanoma using Yervoy (Ipilumab). Also look up ASCO 2014 with Dr. Mario Sznol, very informative with current results on immunotherapies trials. The last video I would recommend is a little bit harder to get to. You have to join Medscape, then look up video with Dr.Ribas and Jeffrey Weber , they do a summary of highlights of ASCO 2014 which took place in early June. The title of the video is " Pretty Darn impressive PD-1 data in Melanoma. Hope this will get you started. My understanding of having a positive lymph node, this information will help your Oncologist to stage your melanoma. There are lots of great people on this forum that will help you along !!! Don't be shy to ask them for help!!!  Ed

          • July 16, 2014 at 3:17 am
          ed williams
          Participant

            Hi Elaine, I will give you a couple of resources to get you started. Look up on youtube these two video from 2014 ASCO meeting. First one is title ASCO 2014. Dr. Wolchok is being interviewed in what is called ' the best of the day' it is under ( Imedex). Dr. Wolchok talks about several studies and one is about a clinical trial of stage 3 a,b,and c melanoma using Yervoy (Ipilumab). Also look up ASCO 2014 with Dr. Mario Sznol, very informative with current results on immunotherapies trials. The last video I would recommend is a little bit harder to get to. You have to join Medscape, then look up video with Dr.Ribas and Jeffrey Weber , they do a summary of highlights of ASCO 2014 which took place in early June. The title of the video is " Pretty Darn impressive PD-1 data in Melanoma. Hope this will get you started. My understanding of having a positive lymph node, this information will help your Oncologist to stage your melanoma. There are lots of great people on this forum that will help you along !!! Don't be shy to ask them for help!!!  Ed

            • July 16, 2014 at 3:17 am
            ed williams
            Participant

              Hi Elaine, I will give you a couple of resources to get you started. Look up on youtube these two video from 2014 ASCO meeting. First one is title ASCO 2014. Dr. Wolchok is being interviewed in what is called ' the best of the day' it is under ( Imedex). Dr. Wolchok talks about several studies and one is about a clinical trial of stage 3 a,b,and c melanoma using Yervoy (Ipilumab). Also look up ASCO 2014 with Dr. Mario Sznol, very informative with current results on immunotherapies trials. The last video I would recommend is a little bit harder to get to. You have to join Medscape, then look up video with Dr.Ribas and Jeffrey Weber , they do a summary of highlights of ASCO 2014 which took place in early June. The title of the video is " Pretty Darn impressive PD-1 data in Melanoma. Hope this will get you started. My understanding of having a positive lymph node, this information will help your Oncologist to stage your melanoma. There are lots of great people on this forum that will help you along !!! Don't be shy to ask them for help!!!  Ed

              • July 16, 2014 at 3:22 am
              Ginger8888
              Participant

                Sorry about your diagnoses, i am stage 3 C and had a left neck dissection and had lymph nodes test positive for malanoma..I'm still new to all this an am not sure but i would ask if there is a possibility of the melanoma being in the lymph fluid from your positive node..After my surgery all my scans came up clean but then while i was healing there was a lump show up on my neck  so we did a ct scan followed by a biopsy on the node that lit up a and was positive for melanoma and there were 2 very small spots in my lungs so we went with interferon 30 Hd but that didn't work, one week after finishing interferon i had another ct scan done and the same spots lit up a little brighter.. ( not saying it wouldn't for you though) so i'm going on my 3rd dose of Yervoy on the 23rd so hopefully it will work..Good luck!

                • July 16, 2014 at 3:22 am
                Ginger8888
                Participant

                  Sorry about your diagnoses, i am stage 3 C and had a left neck dissection and had lymph nodes test positive for malanoma..I'm still new to all this an am not sure but i would ask if there is a possibility of the melanoma being in the lymph fluid from your positive node..After my surgery all my scans came up clean but then while i was healing there was a lump show up on my neck  so we did a ct scan followed by a biopsy on the node that lit up a and was positive for melanoma and there were 2 very small spots in my lungs so we went with interferon 30 Hd but that didn't work, one week after finishing interferon i had another ct scan done and the same spots lit up a little brighter.. ( not saying it wouldn't for you though) so i'm going on my 3rd dose of Yervoy on the 23rd so hopefully it will work..Good luck!

                  • July 16, 2014 at 3:22 am
                  Ginger8888
                  Participant

                    Sorry about your diagnoses, i am stage 3 C and had a left neck dissection and had lymph nodes test positive for malanoma..I'm still new to all this an am not sure but i would ask if there is a possibility of the melanoma being in the lymph fluid from your positive node..After my surgery all my scans came up clean but then while i was healing there was a lump show up on my neck  so we did a ct scan followed by a biopsy on the node that lit up a and was positive for melanoma and there were 2 very small spots in my lungs so we went with interferon 30 Hd but that didn't work, one week after finishing interferon i had another ct scan done and the same spots lit up a little brighter.. ( not saying it wouldn't for you though) so i'm going on my 3rd dose of Yervoy on the 23rd so hopefully it will work..Good luck!

                    • July 16, 2014 at 3:49 am
                    JerryfromFauq
                    Participant

                      They are finally conducting some adjuvant trials with some Stage IV treatments for Stage III patients that are NED.  Some of the Stage IV treatments are also available for Stage III patients that have unresectable tumors.    Some centers also offer Trials of vacinnes for patients at the Stage III Level. 

                      http://cancercenters.cancer.gov/cancer_centers/

                      http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names4.html

                      What is a Center of Excellence?  I only know of one person/patient that uses that none standard term. Here is how NCI designates Cancer centers,  All are good cancer centers.  The question is which ones have the best Melanoma Specialists in them.  The Specialists are known for changiing centers.

                      Number of NCI Designated Centers:
                      27 Cancer Centers
                      41 Comprehensive Centers
                      68 Total

                      I am alive today because my Well known Oncology team at a NCI Designated Cancer Center (The Cancer Center at the University of Virginia, University of Virginia Health System, UVA Hermatology/Oncology -) not one of the Designated Comprehensive Centers, researched what I had came up with and inspite of one of the nations top Melanoma research specialists having said that what I wanted was not "Ready for Prime time" and I shouldn't try it.  My team researched what I had found, and though it was not in general clinical trials at that time (Is now), agreed with me and my wildly advancing tumors stabilized withIn a month and now over five years later I am still stable with some tumor reduction.  Prior to this team, I was given 30-180 days in which to die,

                      A source for Specialists:

                      http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html

                      _________________________________________________________

                      thoughts on having the full inguinal node dissection or if it's not necessary if the scans are clear (brain, lungs, etc)?   Again my personnel thoughts.  There are debates in the Oncology community as to whether or not a partial or complete lymph node basin should be removed if cancer cells are found iin the Lymph nodes.    Clinical trials are under way to help get statistics on this area.  I think that the Lymph nodes are in us for the reason of traping problems before the lymph system/channels joins the blood system.  I do agree that if more than a few micro cells are found in the Sentinel node that I feel better if a coupe of clear nodes are removed.  The more nodes removed the greated the likelyhood of lymphedema.
                       

                        • July 16, 2014 at 4:02 am
                        5dives
                        Participant

                          Ed, Jerry, and Ginger,

                          Thank you so much for the comments, you have given me a lot of good "homework" to do.  Something so amazing happened tonight that I don't even know how to process it.

                          I saw the PA today and she said the preliminary results showed a "small amount" of melanoma in the node. She said there was an additional stain being run that would give the full percentage of melanoma. 

                          Tonight at 9:15, the PA called me at home. She said she went to the lab and looked into the results of the final stain. She said the results showed "atypical cells" in the node that are definitely not melanoma, and she was apologetic that she had told me there was metastatic melanoma in my node when there definitely is not.  She said the pathologist is confident and signed off that there is not metastases. 

                          I have requested a second opinion on the slides from Northwestern Memorial Hospital. I know better than to look a gift horse in the mouth (Ginger's comment remindend me of that with her experience), but I'm feeling pretty lucky right now. 

                          I imagine they're going to say I no longer need the scans of brain / lungs / etc. but I'm not sure how I feel about that. 

                          I don't exactly understand where I'm at in the process right now. 

                          The PA said she would call me on Thursday with an update. The next 36 hours are going to be looooong. 

                          Jerry thanks for asking about my use of "Center of Excellence". I'm sure it is something I've picked up in my reading here on this site and on one other site I read. When I used it today at Loyola, the PA didn't bat an eye, but maybe I should work on updating my terminology! 

                          Thanks to all of you,

                          Elaine

                          • July 16, 2014 at 4:02 am
                          5dives
                          Participant

                            Ed, Jerry, and Ginger,

                            Thank you so much for the comments, you have given me a lot of good "homework" to do.  Something so amazing happened tonight that I don't even know how to process it.

                            I saw the PA today and she said the preliminary results showed a "small amount" of melanoma in the node. She said there was an additional stain being run that would give the full percentage of melanoma. 

                            Tonight at 9:15, the PA called me at home. She said she went to the lab and looked into the results of the final stain. She said the results showed "atypical cells" in the node that are definitely not melanoma, and she was apologetic that she had told me there was metastatic melanoma in my node when there definitely is not.  She said the pathologist is confident and signed off that there is not metastases. 

                            I have requested a second opinion on the slides from Northwestern Memorial Hospital. I know better than to look a gift horse in the mouth (Ginger's comment remindend me of that with her experience), but I'm feeling pretty lucky right now. 

                            I imagine they're going to say I no longer need the scans of brain / lungs / etc. but I'm not sure how I feel about that. 

                            I don't exactly understand where I'm at in the process right now. 

                            The PA said she would call me on Thursday with an update. The next 36 hours are going to be looooong. 

                            Jerry thanks for asking about my use of "Center of Excellence". I'm sure it is something I've picked up in my reading here on this site and on one other site I read. When I used it today at Loyola, the PA didn't bat an eye, but maybe I should work on updating my terminology! 

                            Thanks to all of you,

                            Elaine

                            • July 16, 2014 at 4:02 am
                            5dives
                            Participant

                              Ed, Jerry, and Ginger,

                              Thank you so much for the comments, you have given me a lot of good "homework" to do.  Something so amazing happened tonight that I don't even know how to process it.

                              I saw the PA today and she said the preliminary results showed a "small amount" of melanoma in the node. She said there was an additional stain being run that would give the full percentage of melanoma. 

                              Tonight at 9:15, the PA called me at home. She said she went to the lab and looked into the results of the final stain. She said the results showed "atypical cells" in the node that are definitely not melanoma, and she was apologetic that she had told me there was metastatic melanoma in my node when there definitely is not.  She said the pathologist is confident and signed off that there is not metastases. 

                              I have requested a second opinion on the slides from Northwestern Memorial Hospital. I know better than to look a gift horse in the mouth (Ginger's comment remindend me of that with her experience), but I'm feeling pretty lucky right now. 

                              I imagine they're going to say I no longer need the scans of brain / lungs / etc. but I'm not sure how I feel about that. 

                              I don't exactly understand where I'm at in the process right now. 

                              The PA said she would call me on Thursday with an update. The next 36 hours are going to be looooong. 

                              Jerry thanks for asking about my use of "Center of Excellence". I'm sure it is something I've picked up in my reading here on this site and on one other site I read. When I used it today at Loyola, the PA didn't bat an eye, but maybe I should work on updating my terminology! 

                              Thanks to all of you,

                              Elaine

                            • July 16, 2014 at 3:49 am
                            JerryfromFauq
                            Participant

                              They are finally conducting some adjuvant trials with some Stage IV treatments for Stage III patients that are NED.  Some of the Stage IV treatments are also available for Stage III patients that have unresectable tumors.    Some centers also offer Trials of vacinnes for patients at the Stage III Level. 

                              http://cancercenters.cancer.gov/cancer_centers/

                              http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names4.html

                              What is a Center of Excellence?  I only know of one person/patient that uses that none standard term. Here is how NCI designates Cancer centers,  All are good cancer centers.  The question is which ones have the best Melanoma Specialists in them.  The Specialists are known for changiing centers.

                              Number of NCI Designated Centers:
                              27 Cancer Centers
                              41 Comprehensive Centers
                              68 Total

                              I am alive today because my Well known Oncology team at a NCI Designated Cancer Center (The Cancer Center at the University of Virginia, University of Virginia Health System, UVA Hermatology/Oncology -) not one of the Designated Comprehensive Centers, researched what I had came up with and inspite of one of the nations top Melanoma research specialists having said that what I wanted was not "Ready for Prime time" and I shouldn't try it.  My team researched what I had found, and though it was not in general clinical trials at that time (Is now), agreed with me and my wildly advancing tumors stabilized withIn a month and now over five years later I am still stable with some tumor reduction.  Prior to this team, I was given 30-180 days in which to die,

                              A source for Specialists:

                              http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html

                              _________________________________________________________

                              thoughts on having the full inguinal node dissection or if it's not necessary if the scans are clear (brain, lungs, etc)?   Again my personnel thoughts.  There are debates in the Oncology community as to whether or not a partial or complete lymph node basin should be removed if cancer cells are found iin the Lymph nodes.    Clinical trials are under way to help get statistics on this area.  I think that the Lymph nodes are in us for the reason of traping problems before the lymph system/channels joins the blood system.  I do agree that if more than a few micro cells are found in the Sentinel node that I feel better if a coupe of clear nodes are removed.  The more nodes removed the greated the likelyhood of lymphedema.
                               

                              • July 16, 2014 at 3:49 am
                              JerryfromFauq
                              Participant

                                They are finally conducting some adjuvant trials with some Stage IV treatments for Stage III patients that are NED.  Some of the Stage IV treatments are also available for Stage III patients that have unresectable tumors.    Some centers also offer Trials of vacinnes for patients at the Stage III Level. 

                                http://cancercenters.cancer.gov/cancer_centers/

                                http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names4.html

                                What is a Center of Excellence?  I only know of one person/patient that uses that none standard term. Here is how NCI designates Cancer centers,  All are good cancer centers.  The question is which ones have the best Melanoma Specialists in them.  The Specialists are known for changiing centers.

                                Number of NCI Designated Centers:
                                27 Cancer Centers
                                41 Comprehensive Centers
                                68 Total

                                I am alive today because my Well known Oncology team at a NCI Designated Cancer Center (The Cancer Center at the University of Virginia, University of Virginia Health System, UVA Hermatology/Oncology -) not one of the Designated Comprehensive Centers, researched what I had came up with and inspite of one of the nations top Melanoma research specialists having said that what I wanted was not "Ready for Prime time" and I shouldn't try it.  My team researched what I had found, and though it was not in general clinical trials at that time (Is now), agreed with me and my wildly advancing tumors stabilized withIn a month and now over five years later I am still stable with some tumor reduction.  Prior to this team, I was given 30-180 days in which to die,

                                A source for Specialists:

                                http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html

                                _________________________________________________________

                                thoughts on having the full inguinal node dissection or if it's not necessary if the scans are clear (brain, lungs, etc)?   Again my personnel thoughts.  There are debates in the Oncology community as to whether or not a partial or complete lymph node basin should be removed if cancer cells are found iin the Lymph nodes.    Clinical trials are under way to help get statistics on this area.  I think that the Lymph nodes are in us for the reason of traping problems before the lymph system/channels joins the blood system.  I do agree that if more than a few micro cells are found in the Sentinel node that I feel better if a coupe of clear nodes are removed.  The more nodes removed the greated the likelyhood of lymphedema.
                                 

                                • July 16, 2014 at 4:15 am
                                Momrn5
                                Participant

                                  Hi, I had a small amount of cells in the sentinal node….I elected to have the inguinal nodes removed. They were all clear.  Put me at 3a.  I have a small amount of lymph edema that does not affect anything I do.  I think there are more problems if all are removed.  I have had 2 sets of clear scans.  My surgeon told me there was a 5% chance that the melanoma would move through the blood stream bypassing the nodes. So very small chance of that.  I elected to watch and wait.  Interferon is the only approved treatment for stage 3.  And it doesn't work well for most, though there are good results for the 10% it works for.  Has lots of side effects.  There are few clinical trials for 3a. I was offered a double blind with Zelboraf and another drug, versus placebo.  If you have no evidence of disease, how are you to know if it's working?  What's to say that you were going to progress in the first place?  These are the questions I had and ultimately decided against a trial.  Good Luck and Best Wishes to you. 

                                  • July 16, 2014 at 4:15 am
                                  Momrn5
                                  Participant

                                    Hi, I had a small amount of cells in the sentinal node….I elected to have the inguinal nodes removed. They were all clear.  Put me at 3a.  I have a small amount of lymph edema that does not affect anything I do.  I think there are more problems if all are removed.  I have had 2 sets of clear scans.  My surgeon told me there was a 5% chance that the melanoma would move through the blood stream bypassing the nodes. So very small chance of that.  I elected to watch and wait.  Interferon is the only approved treatment for stage 3.  And it doesn't work well for most, though there are good results for the 10% it works for.  Has lots of side effects.  There are few clinical trials for 3a. I was offered a double blind with Zelboraf and another drug, versus placebo.  If you have no evidence of disease, how are you to know if it's working?  What's to say that you were going to progress in the first place?  These are the questions I had and ultimately decided against a trial.  Good Luck and Best Wishes to you. 

                                    • July 16, 2014 at 4:15 am
                                    Momrn5
                                    Participant

                                      Hi, I had a small amount of cells in the sentinal node….I elected to have the inguinal nodes removed. They were all clear.  Put me at 3a.  I have a small amount of lymph edema that does not affect anything I do.  I think there are more problems if all are removed.  I have had 2 sets of clear scans.  My surgeon told me there was a 5% chance that the melanoma would move through the blood stream bypassing the nodes. So very small chance of that.  I elected to watch and wait.  Interferon is the only approved treatment for stage 3.  And it doesn't work well for most, though there are good results for the 10% it works for.  Has lots of side effects.  There are few clinical trials for 3a. I was offered a double blind with Zelboraf and another drug, versus placebo.  If you have no evidence of disease, how are you to know if it's working?  What's to say that you were going to progress in the first place?  These are the questions I had and ultimately decided against a trial.  Good Luck and Best Wishes to you. 

                                      • July 16, 2014 at 5:22 am
                                      Bubbles
                                      Participant

                                        Hey Elaine,

                                        Well that's one heck of a rollercoaster isn't it?!!!  Glad you are getting a second opinion.  No need to speculate at this point…but fingers and toes are crossed for you!  Celeste

                                        • July 16, 2014 at 5:22 am
                                        Bubbles
                                        Participant

                                          Hey Elaine,

                                          Well that's one heck of a rollercoaster isn't it?!!!  Glad you are getting a second opinion.  No need to speculate at this point…but fingers and toes are crossed for you!  Celeste

                                          • July 16, 2014 at 5:22 am
                                          Bubbles
                                          Participant

                                            Hey Elaine,

                                            Well that's one heck of a rollercoaster isn't it?!!!  Glad you are getting a second opinion.  No need to speculate at this point…but fingers and toes are crossed for you!  Celeste

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