Red lump near lymph nodes
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Red lump near lymph nodes

› Forums › General Melanoma Community › Red lump near lymph nodes

  • Post
    • November 20, 2015 at 12:25 am
    Beehappy
    Participant

    My husband is on the ipi vs. nivo trial for stage 3.  He has had his primary – 5mm Breslow, no ulceration, mito rate 3 removed from shoulder and had a total lymph dissection under his arm – 40 nodes removed – 2 nodes positive with micro mets.  He has had 3 possible doses of ipi (which is known to have skin side effects).  Today the oncologist focused on a red spot/lump under he arm about an inch from the scar from his CLD.  It looks like a spider bite but since it has some firmness they are thinking reoccurrence.  Going in for a biopsy tomorrow morning – so it will be a long weekend of waiting for results.  

    If it is positive for melanoma he is out of the trial.  We will be exploring other options for treatment.  Wondering what I should be researching, what people have found success with.  Also trying not to freak out about the possibility of moving to a stage 4 diagnoses.

    Just as we were finding our "new normal" it feels like the rug getting pulled out from under us again.

    🙁

    Rebecca (wife of a stage 3c warrior)

Viewing 5 reply threads
  • Replies
      • November 20, 2015 at 2:01 am
      arthurjedi007
      Participant

      For research it seems like there's a significant focus on combining pd1 with things in hopes of finding what works good with it. Pd1 is either opdivo/nivo or keytruda.

      Orhers are trying to combine ipi with things.

      So I would think once you find out what he has been receiving then go with the other one. Assuming the worse and you need to that is.

      Artie

      • November 20, 2015 at 2:01 am
      arthurjedi007
      Participant

      For research it seems like there's a significant focus on combining pd1 with things in hopes of finding what works good with it. Pd1 is either opdivo/nivo or keytruda.

      Orhers are trying to combine ipi with things.

      So I would think once you find out what he has been receiving then go with the other one. Assuming the worse and you need to that is.

      Artie

      • November 20, 2015 at 2:01 am
      arthurjedi007
      Participant

      For research it seems like there's a significant focus on combining pd1 with things in hopes of finding what works good with it. Pd1 is either opdivo/nivo or keytruda.

      Orhers are trying to combine ipi with things.

      So I would think once you find out what he has been receiving then go with the other one. Assuming the worse and you need to that is.

      Artie

        • November 20, 2015 at 5:45 pm
        Beehappy
        Participant

        Thank you for your response.  Going to do some research while we wait for the biopsy results – should be back in 5 (long) days.

        Wondering if this would change staging.  He is currently at stage 3c.  Would local reoccurrence so close to removed lymph move him to stage 4?

        • November 20, 2015 at 5:45 pm
        Beehappy
        Participant

        Thank you for your response.  Going to do some research while we wait for the biopsy results – should be back in 5 (long) days.

        Wondering if this would change staging.  He is currently at stage 3c.  Would local reoccurrence so close to removed lymph move him to stage 4?

        • November 20, 2015 at 5:45 pm
        Beehappy
        Participant

        Thank you for your response.  Going to do some research while we wait for the biopsy results – should be back in 5 (long) days.

        Wondering if this would change staging.  He is currently at stage 3c.  Would local reoccurrence so close to removed lymph move him to stage 4?

        • November 20, 2015 at 5:53 pm
        arthurjedi007
        Participant

        I have no idea. I was stage 4 from day one so I never had to learn the staging stuff.

        Artie

        • November 20, 2015 at 5:53 pm
        arthurjedi007
        Participant

        I have no idea. I was stage 4 from day one so I never had to learn the staging stuff.

        Artie

        • November 20, 2015 at 5:53 pm
        arthurjedi007
        Participant

        I have no idea. I was stage 4 from day one so I never had to learn the staging stuff.

        Artie

        • November 20, 2015 at 6:37 pm
        Janner
        Participant

        If the recurrence is still "regional", then staging would still be stage 3.  It's only when melanoma becomes "distant" – beyond the closest drainage basin — that it becomes stage IV.  There are nuances within the staging, but that's the basic gist of things.

        • November 20, 2015 at 6:37 pm
        Janner
        Participant

        If the recurrence is still "regional", then staging would still be stage 3.  It's only when melanoma becomes "distant" – beyond the closest drainage basin — that it becomes stage IV.  There are nuances within the staging, but that's the basic gist of things.

        • November 20, 2015 at 6:37 pm
        Janner
        Participant

        If the recurrence is still "regional", then staging would still be stage 3.  It's only when melanoma becomes "distant" – beyond the closest drainage basin — that it becomes stage IV.  There are nuances within the staging, but that's the basic gist of things.

        • November 20, 2015 at 6:42 pm
        Julie in SoCal
        Participant

        No, he'll still be Stage 3C.  I have had 3 recurrences of intransit mets. One while on ipi and one while on Pembro.  Since it seemed like Pembro was taking care of them, that is making them shrink, I stayed on Pembro.  Now after 10 infusions, I don't have any intransits left.  

        My Doc says this progression – regression is a little strange, and outside of the statistical norm (I always knew I was an outlier!) but to be honest, I'm just glad that Pembro is working.

        Just wanted to encourage you and say that immunotheraphies take time. Keep your chin up and keep going!

        Blessings,

        Julie

        • November 20, 2015 at 6:42 pm
        Julie in SoCal
        Participant

        No, he'll still be Stage 3C.  I have had 3 recurrences of intransit mets. One while on ipi and one while on Pembro.  Since it seemed like Pembro was taking care of them, that is making them shrink, I stayed on Pembro.  Now after 10 infusions, I don't have any intransits left.  

        My Doc says this progression – regression is a little strange, and outside of the statistical norm (I always knew I was an outlier!) but to be honest, I'm just glad that Pembro is working.

        Just wanted to encourage you and say that immunotheraphies take time. Keep your chin up and keep going!

        Blessings,

        Julie

        • November 20, 2015 at 6:42 pm
        Julie in SoCal
        Participant

        No, he'll still be Stage 3C.  I have had 3 recurrences of intransit mets. One while on ipi and one while on Pembro.  Since it seemed like Pembro was taking care of them, that is making them shrink, I stayed on Pembro.  Now after 10 infusions, I don't have any intransits left.  

        My Doc says this progression – regression is a little strange, and outside of the statistical norm (I always knew I was an outlier!) but to be honest, I'm just glad that Pembro is working.

        Just wanted to encourage you and say that immunotheraphies take time. Keep your chin up and keep going!

        Blessings,

        Julie

      • November 21, 2015 at 2:37 am
      geriakt
      Participant

      I am on the same clinical trial but I think I am getting the NIVO.  BMS may drop you from the trial but offer you the NIVO at no cost for agreeing to enter the trial. Ask your doctor about that. You may have to pay for the infusion cost but your insurance will cover that.

      Tom

      • November 21, 2015 at 2:37 am
      geriakt
      Participant

      I am on the same clinical trial but I think I am getting the NIVO.  BMS may drop you from the trial but offer you the NIVO at no cost for agreeing to enter the trial. Ask your doctor about that. You may have to pay for the infusion cost but your insurance will cover that.

      Tom

      • November 21, 2015 at 2:37 am
      geriakt
      Participant

      I am on the same clinical trial but I think I am getting the NIVO.  BMS may drop you from the trial but offer you the NIVO at no cost for agreeing to enter the trial. Ask your doctor about that. You may have to pay for the infusion cost but your insurance will cover that.

      Tom

        • November 21, 2015 at 12:14 pm
        Beehappy
        Participant

        If the biopsy comes back positive for melanoma he will be dropped from the trial.  The coordinator told us that they would unblind him if that occurs so we will know what drug he has been getting.  

        We will be researching all options available to him if he is dropped – it is good to know they could offer the drug with additional payment from our end for services.

        • November 21, 2015 at 12:14 pm
        Beehappy
        Participant

        If the biopsy comes back positive for melanoma he will be dropped from the trial.  The coordinator told us that they would unblind him if that occurs so we will know what drug he has been getting.  

        We will be researching all options available to him if he is dropped – it is good to know they could offer the drug with additional payment from our end for services.

        • November 21, 2015 at 12:14 pm
        Beehappy
        Participant

        If the biopsy comes back positive for melanoma he will be dropped from the trial.  The coordinator told us that they would unblind him if that occurs so we will know what drug he has been getting.  

        We will be researching all options available to him if he is dropped – it is good to know they could offer the drug with additional payment from our end for services.

        • November 21, 2015 at 4:30 pm
        Beehappy
        Participant

        Tom – if I may ask, what makes you believe you are on the nivo arm of the study?  My husband has had very few side effects during the past 2 months of infusions (mild headache after infusion, some bathroom stuff, slightly fatigued, minor blotchy red spots which come and go).  We have been trying to figure out which arm he is on.

        If the biopsy doesn't come back positive or just doesn't come back until after Wed. morning, he will be getting the last of 4 ipi/placebo doses and the remainder of the year would be nivo/placebo with a maintenance dose of ipi somewhere around month 6.

        Best wishes this treatment is successful for you.

        ~Rebecca

        • November 21, 2015 at 4:30 pm
        Beehappy
        Participant

        Tom – if I may ask, what makes you believe you are on the nivo arm of the study?  My husband has had very few side effects during the past 2 months of infusions (mild headache after infusion, some bathroom stuff, slightly fatigued, minor blotchy red spots which come and go).  We have been trying to figure out which arm he is on.

        If the biopsy doesn't come back positive or just doesn't come back until after Wed. morning, he will be getting the last of 4 ipi/placebo doses and the remainder of the year would be nivo/placebo with a maintenance dose of ipi somewhere around month 6.

        Best wishes this treatment is successful for you.

        ~Rebecca

        • November 21, 2015 at 4:30 pm
        Beehappy
        Participant

        Tom – if I may ask, what makes you believe you are on the nivo arm of the study?  My husband has had very few side effects during the past 2 months of infusions (mild headache after infusion, some bathroom stuff, slightly fatigued, minor blotchy red spots which come and go).  We have been trying to figure out which arm he is on.

        If the biopsy doesn't come back positive or just doesn't come back until after Wed. morning, he will be getting the last of 4 ipi/placebo doses and the remainder of the year would be nivo/placebo with a maintenance dose of ipi somewhere around month 6.

        Best wishes this treatment is successful for you.

        ~Rebecca

Viewing 5 reply threads
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