Pathology Results
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Pathology Results

› Forums › General Melanoma Community › Pathology Results

  • Post
    • February 23, 2016 at 7:32 pm
    JoshF
    Participant

    So path results came back…approx 4mm well circumscribed nodule that tested positive for Melan-A and extended to margins on 1 side so need a bit more removed. I haven't seen or read path report; it's what derm told me on phone. I just can't seem to shake this crap.

    Anyway, few questions for some of the folks more experienced with Nivo. My oncologist said that I've only had 3 cycles on Nivo and need to give it time. How do they measure cycles? What is median response time to Nivo? She wants me to have the margin excised, stay the course on Nivo and have a PET Scan 6 weeks after excision. I caught it early again and just can't help but wonder if I'm not responding to drug. I want to be aggressive yet patient and not jump the gun.

    Thanks for listening…

     

    Josh

Viewing 11 reply threads
  • Replies
      • February 23, 2016 at 7:56 pm
      Mat
      Participant

      Josh, sorry to hear.  I don't recall the median response time for PD-1, but I suspect that it is at the first or second scan (12-24 weeks).  On the subject of being aggressive, you could ask your onc to add ipi.  My recollection is that you did ipi more than a year ago, so this may be feasible.

      • February 23, 2016 at 7:56 pm
      Mat
      Participant

      Josh, sorry to hear.  I don't recall the median response time for PD-1, but I suspect that it is at the first or second scan (12-24 weeks).  On the subject of being aggressive, you could ask your onc to add ipi.  My recollection is that you did ipi more than a year ago, so this may be feasible.

        • February 23, 2016 at 8:18 pm
        JoshF
        Participant

        Thanks Mat. I started Nivo right around Thanksgiving so I'm not that far along and my onc wanted to wait closer to the 24 weeks because I was NED. Don't think PET would've picked up a 3-4MM leison…would it?

        I did ipi from Oct 2013-Dec 2013 and had complete response…I've just had these tiny subcutaneous nodules pop up. Can you respond twice to ipi? I thought of asking her to add it but my feeling she'd want to reserve that until after Pet Scan and see what those results were.

        • February 23, 2016 at 8:18 pm
        JoshF
        Participant

        Thanks Mat. I started Nivo right around Thanksgiving so I'm not that far along and my onc wanted to wait closer to the 24 weeks because I was NED. Don't think PET would've picked up a 3-4MM leison…would it?

        I did ipi from Oct 2013-Dec 2013 and had complete response…I've just had these tiny subcutaneous nodules pop up. Can you respond twice to ipi? I thought of asking her to add it but my feeling she'd want to reserve that until after Pet Scan and see what those results were.

        • February 23, 2016 at 9:08 pm
        Scooby123
        Participant

        Hi JoshF sorry you are dealing with this yet again. I cannot give you feedback on Nivo, but regarding responding to ippi again , I asked same question to J, Weber and he replied yes there is a high chance of responding again. Hope if you get it it does the job for you. 

        Scooby123

        • February 23, 2016 at 9:08 pm
        Scooby123
        Participant

        Hi JoshF sorry you are dealing with this yet again. I cannot give you feedback on Nivo, but regarding responding to ippi again , I asked same question to J, Weber and he replied yes there is a high chance of responding again. Hope if you get it it does the job for you. 

        Scooby123

        • February 23, 2016 at 9:08 pm
        Scooby123
        Participant

        Hi JoshF sorry you are dealing with this yet again. I cannot give you feedback on Nivo, but regarding responding to ippi again , I asked same question to J, Weber and he replied yes there is a high chance of responding again. Hope if you get it it does the job for you. 

        Scooby123

        • February 23, 2016 at 8:18 pm
        JoshF
        Participant

        Thanks Mat. I started Nivo right around Thanksgiving so I'm not that far along and my onc wanted to wait closer to the 24 weeks because I was NED. Don't think PET would've picked up a 3-4MM leison…would it?

        I did ipi from Oct 2013-Dec 2013 and had complete response…I've just had these tiny subcutaneous nodules pop up. Can you respond twice to ipi? I thought of asking her to add it but my feeling she'd want to reserve that until after Pet Scan and see what those results were.

      • February 23, 2016 at 7:56 pm
      Mat
      Participant

      Josh, sorry to hear.  I don't recall the median response time for PD-1, but I suspect that it is at the first or second scan (12-24 weeks).  On the subject of being aggressive, you could ask your onc to add ipi.  My recollection is that you did ipi more than a year ago, so this may be feasible.

      • February 23, 2016 at 11:20 pm
      ed williams
      Participant

      Hi Josh, a cycle on Nivolumab is 6 weeks long once every two weeks , at least that is how it works on my trial of ipi and Nivo. As far as response time, I think a lot of data will come out in May at ASCO. As a general rule when you compare Ipi and Nivo, the Pd-1 drug seems to have a faster reponse time. Usually by the first set of scans at 12 weeks for Pd-1 drugs. There are all kinds of exceptions to the rule with some people having what is called pseudoprogression  where they seem to get worse before getting better. There is an article in Journal of Clinical Oncology by Victoria L Chiou and Mauricio burotto, titled " Pseudoprogression and Immune-related response in solid tumors. If you google the title and authors you can read it for free. Best wishes!!! Ed

      • February 23, 2016 at 11:20 pm
      ed williams
      Participant

      Hi Josh, a cycle on Nivolumab is 6 weeks long once every two weeks , at least that is how it works on my trial of ipi and Nivo. As far as response time, I think a lot of data will come out in May at ASCO. As a general rule when you compare Ipi and Nivo, the Pd-1 drug seems to have a faster reponse time. Usually by the first set of scans at 12 weeks for Pd-1 drugs. There are all kinds of exceptions to the rule with some people having what is called pseudoprogression  where they seem to get worse before getting better. There is an article in Journal of Clinical Oncology by Victoria L Chiou and Mauricio burotto, titled " Pseudoprogression and Immune-related response in solid tumors. If you google the title and authors you can read it for free. Best wishes!!! Ed

        • February 24, 2016 at 1:35 am
        JoshF
        Participant

        Thanks ED…that helps make a little more sense to me. As far as response, not sure what t think as I'm right at the 12 week period. I responded relatively quickly to the ipi so not sure what to think there. I'm going to read the article now…thanks for sharing!!!

        Josh

        • February 24, 2016 at 1:35 am
        JoshF
        Participant

        Thanks ED…that helps make a little more sense to me. As far as response, not sure what t think as I'm right at the 12 week period. I responded relatively quickly to the ipi so not sure what to think there. I'm going to read the article now…thanks for sharing!!!

        Josh

        • February 24, 2016 at 1:35 am
        JoshF
        Participant

        Thanks ED…that helps make a little more sense to me. As far as response, not sure what t think as I'm right at the 12 week period. I responded relatively quickly to the ipi so not sure what to think there. I'm going to read the article now…thanks for sharing!!!

        Josh

      • February 23, 2016 at 11:20 pm
      ed williams
      Participant

      Hi Josh, a cycle on Nivolumab is 6 weeks long once every two weeks , at least that is how it works on my trial of ipi and Nivo. As far as response time, I think a lot of data will come out in May at ASCO. As a general rule when you compare Ipi and Nivo, the Pd-1 drug seems to have a faster reponse time. Usually by the first set of scans at 12 weeks for Pd-1 drugs. There are all kinds of exceptions to the rule with some people having what is called pseudoprogression  where they seem to get worse before getting better. There is an article in Journal of Clinical Oncology by Victoria L Chiou and Mauricio burotto, titled " Pseudoprogression and Immune-related response in solid tumors. If you google the title and authors you can read it for free. Best wishes!!! Ed

      • February 24, 2016 at 3:38 am
      Bubbles
      Participant

      Well, SH!#!!!!! 

      So, sorry, Josh. Ed is right…that more will be known about reponse times to anti-PD1 alone come ASCO.  But here is what I have now: A slide showing that average response time to nivo/ipi combo vs ipi alone were both around 3 months (or 10-12 weeks) though outliers were found anywhere from 6-10 months.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html

      I think giving nivo a bit more time to work is not a bad idea.  At the same time (in spite of the lung met mess) most of your mets have been rather "in transit like"…..right around the area of presentation.  There is tons of stuff on my blog about the benefit of radiation when combined with immunotherapy as well as intralesional therapy.  So…I'm wondering if some radiation to the area would be beneficial while you continue your nivo. OR….should you develop another met….rather than removing it….(I know!!!  HORRORS…of leaving it there)….treating it with T-VEC, IL-2 (as an intralesional) or PV10 (Rose Bengal)!????  Here's a post from last ASCO:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-intralesional-therapy-for.html

      There are more posts about PV-10 (Rose Bengal) on my blog (use the search bubble if you like.  MPIP freaks out if I put too many links.  Just some ideas I  would discuss with my doc.

      I know this is more than demoralizing.  Hang in there.  The other pearl…that researchers keep telling other docs regarding immunotherapy is "Be patient with the patient."  Meaning….give it time.  That's a quote from an Argwala/Weber webinar.

      You're tough and awesome. Talk to your doc. Let us know what you decide.  love you. c

      • February 24, 2016 at 3:38 am
      Bubbles
      Participant

      Well, SH!#!!!!! 

      So, sorry, Josh. Ed is right…that more will be known about reponse times to anti-PD1 alone come ASCO.  But here is what I have now: A slide showing that average response time to nivo/ipi combo vs ipi alone were both around 3 months (or 10-12 weeks) though outliers were found anywhere from 6-10 months.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html

      I think giving nivo a bit more time to work is not a bad idea.  At the same time (in spite of the lung met mess) most of your mets have been rather "in transit like"…..right around the area of presentation.  There is tons of stuff on my blog about the benefit of radiation when combined with immunotherapy as well as intralesional therapy.  So…I'm wondering if some radiation to the area would be beneficial while you continue your nivo. OR….should you develop another met….rather than removing it….(I know!!!  HORRORS…of leaving it there)….treating it with T-VEC, IL-2 (as an intralesional) or PV10 (Rose Bengal)!????  Here's a post from last ASCO:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-intralesional-therapy-for.html

      There are more posts about PV-10 (Rose Bengal) on my blog (use the search bubble if you like.  MPIP freaks out if I put too many links.  Just some ideas I  would discuss with my doc.

      I know this is more than demoralizing.  Hang in there.  The other pearl…that researchers keep telling other docs regarding immunotherapy is "Be patient with the patient."  Meaning….give it time.  That's a quote from an Argwala/Weber webinar.

      You're tough and awesome. Talk to your doc. Let us know what you decide.  love you. c

        • February 24, 2016 at 3:01 pm
        JoshF
        Participant

        Thanks Celeste…you're too kind and so very informative as usual. Yes other than lung mets, I just get these tiny subcutaneous nodules that pop up. I'm going to discuss these options with my onc on Friday when I go in for my Nivo treatment.  I'd like to do something to put an end to this crap once and for all. Sometimes I think if this crap doesn't kill me the anxiety will. I guess that's where I don't do well…

        I love your blog andso  appreciate when you point out the posts and info relevant to each person's situation, I personally don't know what I'd do with out you on here and I'm sure many others feel that way. Thanks for the support and love!!!

         

        xoxo

        Josh

        • February 24, 2016 at 3:01 pm
        JoshF
        Participant

        Thanks Celeste…you're too kind and so very informative as usual. Yes other than lung mets, I just get these tiny subcutaneous nodules that pop up. I'm going to discuss these options with my onc on Friday when I go in for my Nivo treatment.  I'd like to do something to put an end to this crap once and for all. Sometimes I think if this crap doesn't kill me the anxiety will. I guess that's where I don't do well…

        I love your blog andso  appreciate when you point out the posts and info relevant to each person's situation, I personally don't know what I'd do with out you on here and I'm sure many others feel that way. Thanks for the support and love!!!

         

        xoxo

        Josh

        • February 24, 2016 at 3:01 pm
        JoshF
        Participant

        Thanks Celeste…you're too kind and so very informative as usual. Yes other than lung mets, I just get these tiny subcutaneous nodules that pop up. I'm going to discuss these options with my onc on Friday when I go in for my Nivo treatment.  I'd like to do something to put an end to this crap once and for all. Sometimes I think if this crap doesn't kill me the anxiety will. I guess that's where I don't do well…

        I love your blog andso  appreciate when you point out the posts and info relevant to each person's situation, I personally don't know what I'd do with out you on here and I'm sure many others feel that way. Thanks for the support and love!!!

         

        xoxo

        Josh

      • February 24, 2016 at 3:38 am
      Bubbles
      Participant

      Well, SH!#!!!!! 

      So, sorry, Josh. Ed is right…that more will be known about reponse times to anti-PD1 alone come ASCO.  But here is what I have now: A slide showing that average response time to nivo/ipi combo vs ipi alone were both around 3 months (or 10-12 weeks) though outliers were found anywhere from 6-10 months.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html

      I think giving nivo a bit more time to work is not a bad idea.  At the same time (in spite of the lung met mess) most of your mets have been rather "in transit like"…..right around the area of presentation.  There is tons of stuff on my blog about the benefit of radiation when combined with immunotherapy as well as intralesional therapy.  So…I'm wondering if some radiation to the area would be beneficial while you continue your nivo. OR….should you develop another met….rather than removing it….(I know!!!  HORRORS…of leaving it there)….treating it with T-VEC, IL-2 (as an intralesional) or PV10 (Rose Bengal)!????  Here's a post from last ASCO:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-intralesional-therapy-for.html

      There are more posts about PV-10 (Rose Bengal) on my blog (use the search bubble if you like.  MPIP freaks out if I put too many links.  Just some ideas I  would discuss with my doc.

      I know this is more than demoralizing.  Hang in there.  The other pearl…that researchers keep telling other docs regarding immunotherapy is "Be patient with the patient."  Meaning….give it time.  That's a quote from an Argwala/Weber webinar.

      You're tough and awesome. Talk to your doc. Let us know what you decide.  love you. c

      • February 24, 2016 at 2:48 pm
      jenny22
      Participant

      Hi Josh-

      So sorry to see this did come back as Mel…I cant comment much on the response time for Nivo, but am wondering if any of your DOCs have suggested a course of Radiation to "sterilize" that area.

      I have had two recurrneces, both local, "intransits" tiny (5mm)…..after the 2nd one my  onc said she wanted me to do the radiation.  Not sure if location has some bearing in your case (cheek, right?) but there is "REAL" data that sugggests Radiation is effective for local control…and since you are on Nivo hopefully that is working on systemic aspect.  As you know there is much written about the synergistic effects of Radiation and immunotherapy given toegether.

      I did the hi dose, 5 treatment regimen……hoping it keeps these locals from coming back……

      Just more food for thought.

       

      best,

      jenny

       

       

       

      • February 24, 2016 at 2:48 pm
      jenny22
      Participant

      Hi Josh-

      So sorry to see this did come back as Mel…I cant comment much on the response time for Nivo, but am wondering if any of your DOCs have suggested a course of Radiation to "sterilize" that area.

      I have had two recurrneces, both local, "intransits" tiny (5mm)…..after the 2nd one my  onc said she wanted me to do the radiation.  Not sure if location has some bearing in your case (cheek, right?) but there is "REAL" data that sugggests Radiation is effective for local control…and since you are on Nivo hopefully that is working on systemic aspect.  As you know there is much written about the synergistic effects of Radiation and immunotherapy given toegether.

      I did the hi dose, 5 treatment regimen……hoping it keeps these locals from coming back……

      Just more food for thought.

       

      best,

      jenny

       

       

       

        • February 24, 2016 at 2:52 pm
        jenny22
        Participant

        Josh- I just reread your post, and see this is on your neck/collarbone area…..my radiation was in same location…so location wouldnt be an issue……wasnt sure when I first wrote thinking it was on your cheek.

        Thinking of you, keep us posted!

        best,

        jenny

        • February 24, 2016 at 2:52 pm
        jenny22
        Participant

        Josh- I just reread your post, and see this is on your neck/collarbone area…..my radiation was in same location…so location wouldnt be an issue……wasnt sure when I first wrote thinking it was on your cheek.

        Thinking of you, keep us posted!

        best,

        jenny

        • February 24, 2016 at 3:05 pm
        JoshF
        Participant

        Thanks Jenny….as you said "always food for thought". I like to discuss all options with my onc. I also liked Mat's suggestion of adding ipi….believe me so far I've done well as Stage 4 patient only having these tiny nodules pop up. I feel very fortunate but want to remain aggressive as we all know this crap has amind of its own. Glad you're doing well….keep it up!!!!

         

        Josh

        • February 24, 2016 at 3:05 pm
        JoshF
        Participant

        Thanks Jenny….as you said "always food for thought". I like to discuss all options with my onc. I also liked Mat's suggestion of adding ipi….believe me so far I've done well as Stage 4 patient only having these tiny nodules pop up. I feel very fortunate but want to remain aggressive as we all know this crap has amind of its own. Glad you're doing well….keep it up!!!!

         

        Josh

        • February 24, 2016 at 3:33 pm
        jenny22
        Participant

        Hey Josh- agreed with your earlier comment to Celeste….in fact on both of them……about her time and contribution to this group AND about the anxiety that comes with all this.

        I haven't mastered that part yet…

        Am about to start a years worth of Leukine, and must say am a little anxious about it….on multiple levels….side effects and of course whether or not it  will have any benefit.  Who knows…..

        Hopefully for you NIVO will do its job (and maybe with more IPI) in keeping you NED……as far the returning little sub qs…they are cerntainly scary but better that other distant mets…..lets see what your docs say about adding radiaiton to the mix too!

         

        jenny

         

        • February 24, 2016 at 3:33 pm
        jenny22
        Participant

        Hey Josh- agreed with your earlier comment to Celeste….in fact on both of them……about her time and contribution to this group AND about the anxiety that comes with all this.

        I haven't mastered that part yet…

        Am about to start a years worth of Leukine, and must say am a little anxious about it….on multiple levels….side effects and of course whether or not it  will have any benefit.  Who knows…..

        Hopefully for you NIVO will do its job (and maybe with more IPI) in keeping you NED……as far the returning little sub qs…they are cerntainly scary but better that other distant mets…..lets see what your docs say about adding radiaiton to the mix too!

         

        jenny

         

        • February 24, 2016 at 3:33 pm
        jenny22
        Participant

        Hey Josh- agreed with your earlier comment to Celeste….in fact on both of them……about her time and contribution to this group AND about the anxiety that comes with all this.

        I haven't mastered that part yet…

        Am about to start a years worth of Leukine, and must say am a little anxious about it….on multiple levels….side effects and of course whether or not it  will have any benefit.  Who knows…..

        Hopefully for you NIVO will do its job (and maybe with more IPI) in keeping you NED……as far the returning little sub qs…they are cerntainly scary but better that other distant mets…..lets see what your docs say about adding radiaiton to the mix too!

         

        jenny

         

        • February 24, 2016 at 3:05 pm
        JoshF
        Participant

        Thanks Jenny….as you said "always food for thought". I like to discuss all options with my onc. I also liked Mat's suggestion of adding ipi….believe me so far I've done well as Stage 4 patient only having these tiny nodules pop up. I feel very fortunate but want to remain aggressive as we all know this crap has amind of its own. Glad you're doing well….keep it up!!!!

         

        Josh

        • February 24, 2016 at 2:52 pm
        jenny22
        Participant

        Josh- I just reread your post, and see this is on your neck/collarbone area…..my radiation was in same location…so location wouldnt be an issue……wasnt sure when I first wrote thinking it was on your cheek.

        Thinking of you, keep us posted!

        best,

        jenny

      • February 24, 2016 at 2:48 pm
      jenny22
      Participant

      Hi Josh-

      So sorry to see this did come back as Mel…I cant comment much on the response time for Nivo, but am wondering if any of your DOCs have suggested a course of Radiation to "sterilize" that area.

      I have had two recurrneces, both local, "intransits" tiny (5mm)…..after the 2nd one my  onc said she wanted me to do the radiation.  Not sure if location has some bearing in your case (cheek, right?) but there is "REAL" data that sugggests Radiation is effective for local control…and since you are on Nivo hopefully that is working on systemic aspect.  As you know there is much written about the synergistic effects of Radiation and immunotherapy given toegether.

      I did the hi dose, 5 treatment regimen……hoping it keeps these locals from coming back……

      Just more food for thought.

       

      best,

      jenny

       

       

       

Viewing 11 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Popular Topics