MRF-Logo2019-Horizontal-RGB
Recurrence again
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.

Recurrence again

› Forums › General Melanoma Community › Recurrence again

  • Post
    • November 20, 2015 at 6:14 pm
    Nanners10
    Participant

      Hi all, I am new to posting on this website but not new to reading and learning from this website. A quick background of my situation. I was first diagnosed in 2002 with a 2.24mm MM on my shin. WLE was performed and that was all that was needed until January 2014 when I found a lump in my groin. FNAC was performed and MM was found. I had a superficial lymph node dissection done in March 2014 only 1 out of 4 lymph nodes came back with MM. I entered the ipi vs interferon trial in April 2014 (randomized to receive the lower dose of ipi) and completed the protocol in June 2015. I have just received news of a regional recurrence to two lymph nodes. Now I am back to figuring out the next step in this battle.

      I am currently waiting for surgery to remove the deep inguinal lymph nodes and have some questions that I am hoping some of you can answer.

      1. Are the deep inguinal nodes enough to remove at this point? The CT scan I had last week doesn't show any involvement of iliac or pelvic nodes but the deep ones were clear when I had my last surgery and obviously something was still kicking around.

      2. Should I be pushing for a much more aggressive surgical course including removing the iliac nodes?

      3. Is anyone aware of any trials that are open to someone that has completed an ipi trial (unsuccessfully) and is still stage 3? From what I can see most are open to unresectable or stage 4.

      Any guidance or help that can be provided is much appreciated.

      Nancy H.

    Viewing 2 reply threads
    • Replies
        • November 20, 2015 at 8:04 pm
        jenny22
        Participant

          Hi Nancy H.-

          I am so sorry you are dealing wiht this AGAIN…….and after a 12 year run to have had the first recurrence is awful.

          I dont have an answer on the lymph node removal question, as i havent dealt with LN removal…BUT, what I would say, is that I would absolutley, 100% see another surgical oncolgist, whose specialty is melanoma…that of course in addition to your MED ONC….

          Having multiple expert opinions i think is critical for us with this tricky disease….

          I too am in the midst of a 2nd recurrence…..I have not had any systemic treatment….yet…am seeing 2 med oncs next week to discuss that…am being told to have radiation now for local control….just had my first 2 Radiation ONC appts yesterday and today..and what do you know…TWO completely DIFFERING opinons on what type of radiation each would reccommend.

          I'll be VERY interested to see what each of my two med oncs has to say next week….(one at MSK in NY and my current wonderful doc at NYU)

          As far as trials, not sure what happens now after IPI, maybe keytruda, or repeat IPI at 10 mg/kg dose….or are  are you BRAF +?

          As wonderful as this board is, somtimes its hard to be optimistic, since we are all living it and in the thick of it,  I guess the majority of the long term stage 3 survivors are just not on these boards and are out living their lives….. well i guess thats for another" thread".

          I am sure you'll get other respsonses, but mine is to get multiple opinions….

          keep us posted.

          best,

          jenny

            • November 20, 2015 at 9:27 pm
            Nanners10
            Participant

              Thanks Jenny. I am in Canada so multiple opinions is tricky. I'm going to see what I can do though. I am in a smaller center and am hoping to meet up with a melanoma specialist in a larger center to see what they suggest but I'm just not sure of the logistics of that here. I am meeting with my family doctor next week to see if she can provide some guidance as well.

              Wishing the best for you as well!

              Nancy

              • November 20, 2015 at 9:27 pm
              Nanners10
              Participant

                Thanks Jenny. I am in Canada so multiple opinions is tricky. I'm going to see what I can do though. I am in a smaller center and am hoping to meet up with a melanoma specialist in a larger center to see what they suggest but I'm just not sure of the logistics of that here. I am meeting with my family doctor next week to see if she can provide some guidance as well.

                Wishing the best for you as well!

                Nancy

                • November 20, 2015 at 9:27 pm
                Nanners10
                Participant

                  Thanks Jenny. I am in Canada so multiple opinions is tricky. I'm going to see what I can do though. I am in a smaller center and am hoping to meet up with a melanoma specialist in a larger center to see what they suggest but I'm just not sure of the logistics of that here. I am meeting with my family doctor next week to see if she can provide some guidance as well.

                  Wishing the best for you as well!

                  Nancy

                • November 20, 2015 at 8:04 pm
                jenny22
                Participant

                  Hi Nancy H.-

                  I am so sorry you are dealing wiht this AGAIN…….and after a 12 year run to have had the first recurrence is awful.

                  I dont have an answer on the lymph node removal question, as i havent dealt with LN removal…BUT, what I would say, is that I would absolutley, 100% see another surgical oncolgist, whose specialty is melanoma…that of course in addition to your MED ONC….

                  Having multiple expert opinions i think is critical for us with this tricky disease….

                  I too am in the midst of a 2nd recurrence…..I have not had any systemic treatment….yet…am seeing 2 med oncs next week to discuss that…am being told to have radiation now for local control….just had my first 2 Radiation ONC appts yesterday and today..and what do you know…TWO completely DIFFERING opinons on what type of radiation each would reccommend.

                  I'll be VERY interested to see what each of my two med oncs has to say next week….(one at MSK in NY and my current wonderful doc at NYU)

                  As far as trials, not sure what happens now after IPI, maybe keytruda, or repeat IPI at 10 mg/kg dose….or are  are you BRAF +?

                  As wonderful as this board is, somtimes its hard to be optimistic, since we are all living it and in the thick of it,  I guess the majority of the long term stage 3 survivors are just not on these boards and are out living their lives….. well i guess thats for another" thread".

                  I am sure you'll get other respsonses, but mine is to get multiple opinions….

                  keep us posted.

                  best,

                  jenny

                  • November 20, 2015 at 8:04 pm
                  jenny22
                  Participant

                    Hi Nancy H.-

                    I am so sorry you are dealing wiht this AGAIN…….and after a 12 year run to have had the first recurrence is awful.

                    I dont have an answer on the lymph node removal question, as i havent dealt with LN removal…BUT, what I would say, is that I would absolutley, 100% see another surgical oncolgist, whose specialty is melanoma…that of course in addition to your MED ONC….

                    Having multiple expert opinions i think is critical for us with this tricky disease….

                    I too am in the midst of a 2nd recurrence…..I have not had any systemic treatment….yet…am seeing 2 med oncs next week to discuss that…am being told to have radiation now for local control….just had my first 2 Radiation ONC appts yesterday and today..and what do you know…TWO completely DIFFERING opinons on what type of radiation each would reccommend.

                    I'll be VERY interested to see what each of my two med oncs has to say next week….(one at MSK in NY and my current wonderful doc at NYU)

                    As far as trials, not sure what happens now after IPI, maybe keytruda, or repeat IPI at 10 mg/kg dose….or are  are you BRAF +?

                    As wonderful as this board is, somtimes its hard to be optimistic, since we are all living it and in the thick of it,  I guess the majority of the long term stage 3 survivors are just not on these boards and are out living their lives….. well i guess thats for another" thread".

                    I am sure you'll get other respsonses, but mine is to get multiple opinions….

                    keep us posted.

                    best,

                    jenny

                Viewing 2 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