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Stage iv- on ipi nivo combo – but seem to have new lymph nodes in groin ?
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Stage iv- on ipi nivo combo – but seem to have new lymph nodes in groin ?

› Forums › General Melanoma Community › Stage iv- on ipi nivo combo – but seem to have new lymph nodes in groin ?

  • Post
    • December 22, 2016 at 11:13 pm
    debwray
    Participant

      Already have systemic disease and am on immunotherapy with Ipi Nivo due to spread to visceral organs- am10 weeks in to therapy and have two new pea size lumps on scar line of previous lymph node dissection in groin. Any one with similar experience ? CT scan due in 4 weeks. Oncologist has examined them. They seem to have got slightly bigger this week.

      Could this be a reaction triggered by immunotherapy drugs…or is it more realistic to suspect that they are either new malignant lymph nodes or new sub cutaneous spread . They are not tender or painful. 

      Any relevant feedback welcome- good or bad news …am wondering if they would be likely to do ultrasound aspiration or more surgery if it is  melanoma or  just leave as is and see if ipi nivo does the trick as the melanoma cat is already out of the sack and beyond my lymph system ? 

      Thank you for reading.

    Viewing 2 reply threads
    • Replies
        • December 27, 2016 at 2:15 am
        Mamapegela
        Participant

          I am in a similar situation but have only had my first dose of ipi/nivo 2 weeks ago.  I have developed a pea sized painless lump along the scar line of my CLND on my neck.  Over the last two days I've also developed an itchy rash which is spreading so I will be calling my onc in the morning and informing him of both things.

          I was told that new areas could pop up as the activated T-cells infiltrate areas with melanoma that were previously undetected, so that could be it I suppose.  I would inform your onc and see what they say.

          Good luck to you,

          Peggy

            • December 27, 2016 at 5:38 pm
            debwray
            Participant

              Hi Peggy,

              Thanks for the reply-interestingthat this is cropping up with you too.I was examined by oncologist Mon before Christmas who felt them- but havn't told hubby yet as it could just be swelling- and didn't want him to worry aqny more than he already is doing so posted as anon for now . Will have to tell him tomorrow anyway as he is acting as my driver.  Got upset at last visit dueto being given morning clinic time by phone 8.45 but should have been told 2.30 so was hanging around for hours to be called through and thought theswitch might have been as they needed more time to deal with issues arising- but it was just a mix up and the real appointment time arrived the day after… . plus being put in the grotty room where they told me it was stage 4 didn't help….

              Dr ordered CT scan for 23rd.. but was going to talk to the Prof who I will see tomorrow. It feels like they are 3 swollen lymph nodes in a chain, on the upper side of the groin clearance scar. They are mobile, non tender and less than a cm. The steroids I've been on for the elevated liver enzymes seem to have reduced the lymphoedema andswelling from a seroma /hard area of tissue that was a hangover from the groin clearance- maybe they missed a few nodes  and they are now uncovered. They do seem to list node swelling as possible side effects. Will post and let you know how it turns out  when I know. 

              Hope all goes well for you… followed your story this autumn – ampleased they have got your treatment started. I am also wondering about evening headaches being a side effect- in spiteof the steroids – but I think they already plan to do some endocrine tests tomorrow. Seems like it pays to be vigilant with these drugs.

              Here is to a good result for us both. Having crossed the stage 3 to stage 4 line – it helped my state of mind to be doing something active to combat the Melanoma… andin a crazy way the side effects have given comfort that my body is responding to the drug. Think I'm also getting the start of pigment changes/ vitiligo but its so subtle am not yet sure if it is just wishful thinking.

              Glad you are still here and posting and thanks for chipping in your experience….I do  find comfort in knowing that I'm not alone.

               

               

               

              • December 27, 2016 at 5:38 pm
              debwray
              Participant

                Hi Peggy,

                Thanks for the reply-interestingthat this is cropping up with you too.I was examined by oncologist Mon before Christmas who felt them- but havn't told hubby yet as it could just be swelling- and didn't want him to worry aqny more than he already is doing so posted as anon for now . Will have to tell him tomorrow anyway as he is acting as my driver.  Got upset at last visit dueto being given morning clinic time by phone 8.45 but should have been told 2.30 so was hanging around for hours to be called through and thought theswitch might have been as they needed more time to deal with issues arising- but it was just a mix up and the real appointment time arrived the day after… . plus being put in the grotty room where they told me it was stage 4 didn't help….

                Dr ordered CT scan for 23rd.. but was going to talk to the Prof who I will see tomorrow. It feels like they are 3 swollen lymph nodes in a chain, on the upper side of the groin clearance scar. They are mobile, non tender and less than a cm. The steroids I've been on for the elevated liver enzymes seem to have reduced the lymphoedema andswelling from a seroma /hard area of tissue that was a hangover from the groin clearance- maybe they missed a few nodes  and they are now uncovered. They do seem to list node swelling as possible side effects. Will post and let you know how it turns out  when I know. 

                Hope all goes well for you… followed your story this autumn – ampleased they have got your treatment started. I am also wondering about evening headaches being a side effect- in spiteof the steroids – but I think they already plan to do some endocrine tests tomorrow. Seems like it pays to be vigilant with these drugs.

                Here is to a good result for us both. Having crossed the stage 3 to stage 4 line – it helped my state of mind to be doing something active to combat the Melanoma… andin a crazy way the side effects have given comfort that my body is responding to the drug. Think I'm also getting the start of pigment changes/ vitiligo but its so subtle am not yet sure if it is just wishful thinking.

                Glad you are still here and posting and thanks for chipping in your experience….I do  find comfort in knowing that I'm not alone.

                 

                 

                 

                • December 27, 2016 at 5:38 pm
                debwray
                Participant

                  Hi Peggy,

                  Thanks for the reply-interestingthat this is cropping up with you too.I was examined by oncologist Mon before Christmas who felt them- but havn't told hubby yet as it could just be swelling- and didn't want him to worry aqny more than he already is doing so posted as anon for now . Will have to tell him tomorrow anyway as he is acting as my driver.  Got upset at last visit dueto being given morning clinic time by phone 8.45 but should have been told 2.30 so was hanging around for hours to be called through and thought theswitch might have been as they needed more time to deal with issues arising- but it was just a mix up and the real appointment time arrived the day after… . plus being put in the grotty room where they told me it was stage 4 didn't help….

                  Dr ordered CT scan for 23rd.. but was going to talk to the Prof who I will see tomorrow. It feels like they are 3 swollen lymph nodes in a chain, on the upper side of the groin clearance scar. They are mobile, non tender and less than a cm. The steroids I've been on for the elevated liver enzymes seem to have reduced the lymphoedema andswelling from a seroma /hard area of tissue that was a hangover from the groin clearance- maybe they missed a few nodes  and they are now uncovered. They do seem to list node swelling as possible side effects. Will post and let you know how it turns out  when I know. 

                  Hope all goes well for you… followed your story this autumn – ampleased they have got your treatment started. I am also wondering about evening headaches being a side effect- in spiteof the steroids – but I think they already plan to do some endocrine tests tomorrow. Seems like it pays to be vigilant with these drugs.

                  Here is to a good result for us both. Having crossed the stage 3 to stage 4 line – it helped my state of mind to be doing something active to combat the Melanoma… andin a crazy way the side effects have given comfort that my body is responding to the drug. Think I'm also getting the start of pigment changes/ vitiligo but its so subtle am not yet sure if it is just wishful thinking.

                  Glad you are still here and posting and thanks for chipping in your experience….I do  find comfort in knowing that I'm not alone.

                   

                   

                   

                • December 27, 2016 at 2:15 am
                Mamapegela
                Participant

                  I am in a similar situation but have only had my first dose of ipi/nivo 2 weeks ago.  I have developed a pea sized painless lump along the scar line of my CLND on my neck.  Over the last two days I've also developed an itchy rash which is spreading so I will be calling my onc in the morning and informing him of both things.

                  I was told that new areas could pop up as the activated T-cells infiltrate areas with melanoma that were previously undetected, so that could be it I suppose.  I would inform your onc and see what they say.

                  Good luck to you,

                  Peggy

                  • December 27, 2016 at 2:15 am
                  Mamapegela
                  Participant

                    I am in a similar situation but have only had my first dose of ipi/nivo 2 weeks ago.  I have developed a pea sized painless lump along the scar line of my CLND on my neck.  Over the last two days I've also developed an itchy rash which is spreading so I will be calling my onc in the morning and informing him of both things.

                    I was told that new areas could pop up as the activated T-cells infiltrate areas with melanoma that were previously undetected, so that could be it I suppose.  I would inform your onc and see what they say.

                    Good luck to you,

                    Peggy

                Viewing 2 reply threads

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