MRI Results
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MRI Results

› Forums › General Melanoma Community › MRI Results

  • Post
    • January 9, 2015 at 7:13 pm
    JoshF
    Participant

    Saw surgeon for MRI results today. There's a 4.75mm nodule that can't be ruled out for recurrence. So he scheduled surgery for Tuesday to go in and get it. I'm distraught once again as many of you know I've been down this path just over a year ago which eventually led to my Stage 4 diagnosis with metastasis to lungs. He wants to have a pathologist there on Tuesday to test tissue to ensure margins are clear…is this something they can do? I thought special staining is required? Anyway this is where I'm at:

     

    Chances of this being something other than recurrence? He said suture granuloma is possible and I asked about scar tissue he said MRI showed nodule was different than surrounding tissue.

    With most likely having a recurrence does this mean the ipi and IL-2 I did from Oct 2013-Jan 2014 didn't work…or rather stopped working? I had a scan in Oct that still left me at NED.

    Can this be only a local recurrence and immuno drugs are still working? I'm just so confused, everyone was convinced I was on a good path to being NED.

    Should I ask for SNLB at same time of surgery on Tuesday? I have a well respected Head & Neck Surgeon who knows melanoma but now I'm questioning going to surgical oncologist. I asked him if he was comfortable doing surgery and he said let's do it. He did the surgery in Sept 2013 and was good.

    I'm just not sure what to do or where this leaves me….recurrence a year later. I fight to stay positive but that dark side looms over me….I know many of you have been through the ringer more than I have; I'm just trying to grasp a glimpse of hope here.

    Josh

Viewing 8 reply threads
  • Replies
      • January 9, 2015 at 7:43 pm
      Prd10
      Participant

      Hi Josh,

      Sorry to read this.  I was really hoping they would be able to rule it out for you.  I don't have much to add, except to maybe suggest getting another opinion.  I really liked Dr. Bines at Rush and Dr. Wayne at Northwestern.  Did they suggest that it was something that could be monitored for growth?  That doesn't sound very big, but I don't know it's all so confusing.

      Just wanted to say I'm hoping and praying it's nothing.

      take care 

      • January 9, 2015 at 7:43 pm
      Prd10
      Participant

      Hi Josh,

      Sorry to read this.  I was really hoping they would be able to rule it out for you.  I don't have much to add, except to maybe suggest getting another opinion.  I really liked Dr. Bines at Rush and Dr. Wayne at Northwestern.  Did they suggest that it was something that could be monitored for growth?  That doesn't sound very big, but I don't know it's all so confusing.

      Just wanted to say I'm hoping and praying it's nothing.

      take care 

        • January 10, 2015 at 1:37 pm
        JoshF
        Participant

        Hi Caitlin-

        I'm considering going back down and seeing Dr. Bilmoria or Dr. Wayne at NWM. We had been watching this for 2 months, I can't really say it has gotten much bigger…it seems like it will get smaller then bigger but really at end of day I have no idea. I ant to have surgery quick but want to be sure I'm doing right thing.

        Josh

        • January 10, 2015 at 1:37 pm
        JoshF
        Participant

        Hi Caitlin-

        I'm considering going back down and seeing Dr. Bilmoria or Dr. Wayne at NWM. We had been watching this for 2 months, I can't really say it has gotten much bigger…it seems like it will get smaller then bigger but really at end of day I have no idea. I ant to have surgery quick but want to be sure I'm doing right thing.

        Josh

        • January 10, 2015 at 1:37 pm
        JoshF
        Participant

        Hi Caitlin-

        I'm considering going back down and seeing Dr. Bilmoria or Dr. Wayne at NWM. We had been watching this for 2 months, I can't really say it has gotten much bigger…it seems like it will get smaller then bigger but really at end of day I have no idea. I ant to have surgery quick but want to be sure I'm doing right thing.

        Josh

      • January 9, 2015 at 7:43 pm
      Prd10
      Participant

      Hi Josh,

      Sorry to read this.  I was really hoping they would be able to rule it out for you.  I don't have much to add, except to maybe suggest getting another opinion.  I really liked Dr. Bines at Rush and Dr. Wayne at Northwestern.  Did they suggest that it was something that could be monitored for growth?  That doesn't sound very big, but I don't know it's all so confusing.

      Just wanted to say I'm hoping and praying it's nothing.

      take care 

      • January 9, 2015 at 7:51 pm
      ed williams
      Participant

      Hi Josh, I read your Bio and I have a couple of questions. One, where is the surgery site exactly? Secondly you said you have had Ipi and failed, so why not start you on a PD-1 drug at this point. They did a lung biopsy on me two year ago to determine that it was Melanoma. I really think you should consider the opinion of a Melanoma expert before going forward.  Best of luck! Ed

      • January 9, 2015 at 7:51 pm
      ed williams
      Participant

      Hi Josh, I read your Bio and I have a couple of questions. One, where is the surgery site exactly? Secondly you said you have had Ipi and failed, so why not start you on a PD-1 drug at this point. They did a lung biopsy on me two year ago to determine that it was Melanoma. I really think you should consider the opinion of a Melanoma expert before going forward.  Best of luck! Ed

        • January 9, 2015 at 7:55 pm
        JoshF
        Participant

        Hi Ed-

        I had WLE on RT cheek with a recurrence in Sept 2013 in scar and mets to lungs. I did trial of ipi followed by IL-2. Finished IL-2 at end of January 2014. In Feb 2014 I was declared NED and have been so until today. I do see a melanoma specialist and waiting to hear back from her hopefully some point today.

         

        Josh

        • January 9, 2015 at 7:55 pm
        JoshF
        Participant

        Hi Ed-

        I had WLE on RT cheek with a recurrence in Sept 2013 in scar and mets to lungs. I did trial of ipi followed by IL-2. Finished IL-2 at end of January 2014. In Feb 2014 I was declared NED and have been so until today. I do see a melanoma specialist and waiting to hear back from her hopefully some point today.

         

        Josh

        • January 9, 2015 at 7:57 pm
        JoshF
        Participant

        Sorry I forgot to add that at this point I'm asking if I have failed ipi since now I'mlooking at recurrence. Can I go back to it? Can I go back to IL-2? Or move right to PD-1 or can surgery put me at NED again and what do I do from there? Sorry, I'm probably not making sense…

        • January 9, 2015 at 7:57 pm
        JoshF
        Participant

        Sorry I forgot to add that at this point I'm asking if I have failed ipi since now I'mlooking at recurrence. Can I go back to it? Can I go back to IL-2? Or move right to PD-1 or can surgery put me at NED again and what do I do from there? Sorry, I'm probably not making sense…

        • January 9, 2015 at 8:36 pm
        Cooper
        Participant

        in my case, IL2 caused kidney problems so I would not go back to it.  The PD1s are tops to move onto.

        • January 9, 2015 at 8:36 pm
        Cooper
        Participant

        in my case, IL2 caused kidney problems so I would not go back to it.  The PD1s are tops to move onto.

        • January 9, 2015 at 8:36 pm
        Cooper
        Participant

        in my case, IL2 caused kidney problems so I would not go back to it.  The PD1s are tops to move onto.

        • January 9, 2015 at 9:28 pm
        ed williams
        Participant

        Hi Josh, I am still wondering where they want to do surgery on you? Ed

        • January 9, 2015 at 9:28 pm
        ed williams
        Participant

        Hi Josh, I am still wondering where they want to do surgery on you? Ed

        • January 9, 2015 at 9:37 pm
        JoshF
        Participant

        Right cheek…where the initial lump was taken out in 2011 and recurrence in 2013. Likely recurrence next to scar

        • January 9, 2015 at 9:37 pm
        JoshF
        Participant

        Right cheek…where the initial lump was taken out in 2011 and recurrence in 2013. Likely recurrence next to scar

        • January 9, 2015 at 10:22 pm
        arthurjedi007
        Participant

        Ipi and il-2 are possible options to do again separately like you did before but it is up to your doctor. How affective that would be I dunno. Something to ask your doc. Also they have more toxicity than pd1. You might want to talk about pd1 with your doc too. 

        Artie

        • January 9, 2015 at 10:22 pm
        arthurjedi007
        Participant

        Ipi and il-2 are possible options to do again separately like you did before but it is up to your doctor. How affective that would be I dunno. Something to ask your doc. Also they have more toxicity than pd1. You might want to talk about pd1 with your doc too. 

        Artie

        • January 9, 2015 at 10:22 pm
        arthurjedi007
        Participant

        Ipi and il-2 are possible options to do again separately like you did before but it is up to your doctor. How affective that would be I dunno. Something to ask your doc. Also they have more toxicity than pd1. You might want to talk about pd1 with your doc too. 

        Artie

        • January 9, 2015 at 9:37 pm
        JoshF
        Participant

        Right cheek…where the initial lump was taken out in 2011 and recurrence in 2013. Likely recurrence next to scar

        • January 9, 2015 at 9:28 pm
        ed williams
        Participant

        Hi Josh, I am still wondering where they want to do surgery on you? Ed

        • January 9, 2015 at 7:57 pm
        JoshF
        Participant

        Sorry I forgot to add that at this point I'm asking if I have failed ipi since now I'mlooking at recurrence. Can I go back to it? Can I go back to IL-2? Or move right to PD-1 or can surgery put me at NED again and what do I do from there? Sorry, I'm probably not making sense…

        • January 9, 2015 at 7:55 pm
        JoshF
        Participant

        Hi Ed-

        I had WLE on RT cheek with a recurrence in Sept 2013 in scar and mets to lungs. I did trial of ipi followed by IL-2. Finished IL-2 at end of January 2014. In Feb 2014 I was declared NED and have been so until today. I do see a melanoma specialist and waiting to hear back from her hopefully some point today.

         

        Josh

      • January 9, 2015 at 7:51 pm
      ed williams
      Participant

      Hi Josh, I read your Bio and I have a couple of questions. One, where is the surgery site exactly? Secondly you said you have had Ipi and failed, so why not start you on a PD-1 drug at this point. They did a lung biopsy on me two year ago to determine that it was Melanoma. I really think you should consider the opinion of a Melanoma expert before going forward.  Best of luck! Ed

      • January 9, 2015 at 11:59 pm
      Bubbles
      Participant

      Hey Josh,

      So sorry. I know that was not the MRI result you were hoping for.  Hopefully with surgery they can get in there and see exactly what you are dealing with.  I can't remember if you were BRAF positive or not.  If the mass is melanoma, they can test the material removed even if they have tested you before to see what it shows.  If BRAF positive, obviously you are a candidate for BRAF inhibitors, usually combined with MEK inhibitors.  If you have in fact progessed on ipi and are NOT BRAF positive you immediately qualify for either anti-PD1 product  – Pembrolizumab, now Keytruda or Nivolumab, now Opdivo.  Additionally, there are several trials that combine ipi with different products to hopefully improve response.  One that seems promising combines ipi with an IDO inhibitor.  Another, gives a med to decrease T-regs before ipi is given.  Of course, the jury is out on the absolute results of those.  I only bring them up to let you know that you really do have many options.  Hang in there.  I hope the surgery goes as easily as possible.  Yours, Celeste

      • January 9, 2015 at 11:59 pm
      Bubbles
      Participant

      Hey Josh,

      So sorry. I know that was not the MRI result you were hoping for.  Hopefully with surgery they can get in there and see exactly what you are dealing with.  I can't remember if you were BRAF positive or not.  If the mass is melanoma, they can test the material removed even if they have tested you before to see what it shows.  If BRAF positive, obviously you are a candidate for BRAF inhibitors, usually combined with MEK inhibitors.  If you have in fact progessed on ipi and are NOT BRAF positive you immediately qualify for either anti-PD1 product  – Pembrolizumab, now Keytruda or Nivolumab, now Opdivo.  Additionally, there are several trials that combine ipi with different products to hopefully improve response.  One that seems promising combines ipi with an IDO inhibitor.  Another, gives a med to decrease T-regs before ipi is given.  Of course, the jury is out on the absolute results of those.  I only bring them up to let you know that you really do have many options.  Hang in there.  I hope the surgery goes as easily as possible.  Yours, Celeste

        • January 10, 2015 at 3:04 am
        JoshF
        Participant

        Thanks Celeste. I'm wondering if I should move forward with head & neck surgeon plan or go with surgical oncologist? Do I need a SNLB? What if by slim margin it's not melanoma? I'm going under assumption it is so that's irrelevant. Does this mean I'm not a responder to ipi or IL2? Or my response has stopped? I just want to make best decisions. Never heard back from onc today…suprising but my guess is she is getting facts and next steps together. If it's only in face, what are my options?

        thanks for always responding Celeste with comforting and sound advice. I'm still holding onto to hope that I can beat this back and watchy kids grow up.

        Josh

        • January 10, 2015 at 3:04 am
        JoshF
        Participant

        Thanks Celeste. I'm wondering if I should move forward with head & neck surgeon plan or go with surgical oncologist? Do I need a SNLB? What if by slim margin it's not melanoma? I'm going under assumption it is so that's irrelevant. Does this mean I'm not a responder to ipi or IL2? Or my response has stopped? I just want to make best decisions. Never heard back from onc today…suprising but my guess is she is getting facts and next steps together. If it's only in face, what are my options?

        thanks for always responding Celeste with comforting and sound advice. I'm still holding onto to hope that I can beat this back and watchy kids grow up.

        Josh

        • January 10, 2015 at 3:04 am
        JoshF
        Participant

        Thanks Celeste. I'm wondering if I should move forward with head & neck surgeon plan or go with surgical oncologist? Do I need a SNLB? What if by slim margin it's not melanoma? I'm going under assumption it is so that's irrelevant. Does this mean I'm not a responder to ipi or IL2? Or my response has stopped? I just want to make best decisions. Never heard back from onc today…suprising but my guess is she is getting facts and next steps together. If it's only in face, what are my options?

        thanks for always responding Celeste with comforting and sound advice. I'm still holding onto to hope that I can beat this back and watchy kids grow up.

        Josh

        • January 10, 2015 at 3:10 pm
        Bubbles
        Participant

        Hey Josh,

        Here are my thoughts:

        1. You do not need a sentinel node  biopsy. You already had that done and the area has been massively changed by prior tumors and surgery. There is no longer a "sentinel" at the gate to be the first node/soldier as lookout. If your surgeon, in the process of your surgery, were to encounter nodes or other things in the area that look suspect, I would want him to remove them as well as the mass in question (and it is standard procedure that he would). They would then be analyzed by pathology. But, if they exist…and were positive…they would not be 'sentinel' nodes. Rather, they would simply indicate nodal involvement.

        2. I don't think an 'oncology' surgeon is essential. I have had one surgeon trained as such and a thoracic and ENT surgeon who were not, but had certainly done many procedures to remove cancerous lesions. If your head and neck surgeon is good (and it seems that he is), can discuss the issue of nodes and what his plan is regarding surrounding tissue and findings, and your case is being managed by a melanoma specialist….you are probably in good hands.  A good team is more important than one person cause these folks need to work together.

        3. If the mass to be removed is melanoma you need BRAF testing!

        4. As far as your response –  You did respond well to your ipi/IL2…..the place in your cheek and the lesions to your lungs went away. Sadly, recurrence is an unfortunate, common pattern with melanoma. There are those who stay NED for 10 plus years. But, those who stay NED for a wide variety of time frames….short or long…too often recur. That's why we don't get to use the 'C word' (cure) in melanoma…or even remission.  Hopefully, you and I will get to see that change in our lifetimes. But…at the moment….if your lesion is positive for melanoma…it is a sadly typical pattern for this disease.

        5. Now…hopefully the lesion will not be melanoma. If it is…any sort of spread will be important to know because it will affect treatment choice. If through surgery and your scans, it is determined to be an single isolated melanoma lesion…and it is removed…you wiĺl be NED…again.  At that point you will have to decide if you want to watch and wait or seek a trial for NED patients..which is a bit difficult to find.

        Good luck with your surgery. I wish you well. C

         

         

        • January 10, 2015 at 3:10 pm
        Bubbles
        Participant

        Hey Josh,

        Here are my thoughts:

        1. You do not need a sentinel node  biopsy. You already had that done and the area has been massively changed by prior tumors and surgery. There is no longer a "sentinel" at the gate to be the first node/soldier as lookout. If your surgeon, in the process of your surgery, were to encounter nodes or other things in the area that look suspect, I would want him to remove them as well as the mass in question (and it is standard procedure that he would). They would then be analyzed by pathology. But, if they exist…and were positive…they would not be 'sentinel' nodes. Rather, they would simply indicate nodal involvement.

        2. I don't think an 'oncology' surgeon is essential. I have had one surgeon trained as such and a thoracic and ENT surgeon who were not, but had certainly done many procedures to remove cancerous lesions. If your head and neck surgeon is good (and it seems that he is), can discuss the issue of nodes and what his plan is regarding surrounding tissue and findings, and your case is being managed by a melanoma specialist….you are probably in good hands.  A good team is more important than one person cause these folks need to work together.

        3. If the mass to be removed is melanoma you need BRAF testing!

        4. As far as your response –  You did respond well to your ipi/IL2…..the place in your cheek and the lesions to your lungs went away. Sadly, recurrence is an unfortunate, common pattern with melanoma. There are those who stay NED for 10 plus years. But, those who stay NED for a wide variety of time frames….short or long…too often recur. That's why we don't get to use the 'C word' (cure) in melanoma…or even remission.  Hopefully, you and I will get to see that change in our lifetimes. But…at the moment….if your lesion is positive for melanoma…it is a sadly typical pattern for this disease.

        5. Now…hopefully the lesion will not be melanoma. If it is…any sort of spread will be important to know because it will affect treatment choice. If through surgery and your scans, it is determined to be an single isolated melanoma lesion…and it is removed…you wiĺl be NED…again.  At that point you will have to decide if you want to watch and wait or seek a trial for NED patients..which is a bit difficult to find.

        Good luck with your surgery. I wish you well. C

         

         

        • January 10, 2015 at 3:10 pm
        Bubbles
        Participant

        Hey Josh,

        Here are my thoughts:

        1. You do not need a sentinel node  biopsy. You already had that done and the area has been massively changed by prior tumors and surgery. There is no longer a "sentinel" at the gate to be the first node/soldier as lookout. If your surgeon, in the process of your surgery, were to encounter nodes or other things in the area that look suspect, I would want him to remove them as well as the mass in question (and it is standard procedure that he would). They would then be analyzed by pathology. But, if they exist…and were positive…they would not be 'sentinel' nodes. Rather, they would simply indicate nodal involvement.

        2. I don't think an 'oncology' surgeon is essential. I have had one surgeon trained as such and a thoracic and ENT surgeon who were not, but had certainly done many procedures to remove cancerous lesions. If your head and neck surgeon is good (and it seems that he is), can discuss the issue of nodes and what his plan is regarding surrounding tissue and findings, and your case is being managed by a melanoma specialist….you are probably in good hands.  A good team is more important than one person cause these folks need to work together.

        3. If the mass to be removed is melanoma you need BRAF testing!

        4. As far as your response –  You did respond well to your ipi/IL2…..the place in your cheek and the lesions to your lungs went away. Sadly, recurrence is an unfortunate, common pattern with melanoma. There are those who stay NED for 10 plus years. But, those who stay NED for a wide variety of time frames….short or long…too often recur. That's why we don't get to use the 'C word' (cure) in melanoma…or even remission.  Hopefully, you and I will get to see that change in our lifetimes. But…at the moment….if your lesion is positive for melanoma…it is a sadly typical pattern for this disease.

        5. Now…hopefully the lesion will not be melanoma. If it is…any sort of spread will be important to know because it will affect treatment choice. If through surgery and your scans, it is determined to be an single isolated melanoma lesion…and it is removed…you wiĺl be NED…again.  At that point you will have to decide if you want to watch and wait or seek a trial for NED patients..which is a bit difficult to find.

        Good luck with your surgery. I wish you well. C

         

         

        • January 10, 2015 at 4:02 pm
        JoshF
        Participant

        Celeste-

        You're too good to me. My brain is scrambeld eggs and you're unscrambling it for me. I'm going to do suregery Tuesday, pray that there is a glimmer of hope this leison isn't melanoma and if it is….it didn't spread. It's always one step forward….2 steps back… but it beats the alternative :). As long as I keep taking steps…

        I'll keep you in loop. Thanks again.

        Josh

        • January 10, 2015 at 4:02 pm
        JoshF
        Participant

        Celeste-

        You're too good to me. My brain is scrambeld eggs and you're unscrambling it for me. I'm going to do suregery Tuesday, pray that there is a glimmer of hope this leison isn't melanoma and if it is….it didn't spread. It's always one step forward….2 steps back… but it beats the alternative :). As long as I keep taking steps…

        I'll keep you in loop. Thanks again.

        Josh

        • January 10, 2015 at 4:02 pm
        JoshF
        Participant

        Celeste-

        You're too good to me. My brain is scrambeld eggs and you're unscrambling it for me. I'm going to do suregery Tuesday, pray that there is a glimmer of hope this leison isn't melanoma and if it is….it didn't spread. It's always one step forward….2 steps back… but it beats the alternative :). As long as I keep taking steps…

        I'll keep you in loop. Thanks again.

        Josh

      • January 9, 2015 at 11:59 pm
      Bubbles
      Participant

      Hey Josh,

      So sorry. I know that was not the MRI result you were hoping for.  Hopefully with surgery they can get in there and see exactly what you are dealing with.  I can't remember if you were BRAF positive or not.  If the mass is melanoma, they can test the material removed even if they have tested you before to see what it shows.  If BRAF positive, obviously you are a candidate for BRAF inhibitors, usually combined with MEK inhibitors.  If you have in fact progessed on ipi and are NOT BRAF positive you immediately qualify for either anti-PD1 product  – Pembrolizumab, now Keytruda or Nivolumab, now Opdivo.  Additionally, there are several trials that combine ipi with different products to hopefully improve response.  One that seems promising combines ipi with an IDO inhibitor.  Another, gives a med to decrease T-regs before ipi is given.  Of course, the jury is out on the absolute results of those.  I only bring them up to let you know that you really do have many options.  Hang in there.  I hope the surgery goes as easily as possible.  Yours, Celeste

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