MRF-Logo2019-Horizontal-RGB
complications and issues with docs
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.

complications and issues with docs

› Forums › General Melanoma Community › complications and issues with docs

  • Post
    • November 8, 2022 at 4:19 pm
    tkoss
    Participant
      i post this to be informative to any reader. YES I HAD COMPLCATIONS from an axial lymph node lymphodectomy. since it was my second time on the same lympth node i didn’t expect problems and the oncologocial suregeon only fleetingly mentioned NERVE DAMAGE. Which I got! Too soon to tell how it will resolve itself. They must do 10’000 or more a year as lymphodectomies are involved in many other cancers and diseases. you would think they figured this out.

      secondly in 3 years of treatment no one as mentioned the BRAF test. i attribute this to the oncs not being melanoam savy. If there are other reasons i don’t know what they are.

    Viewing 5 reply threads
    • Replies
        • November 23, 2022 at 11:40 pm
        Tantric Bodywork
        Participant
          Thank you so much for this great information
          • December 1, 2022 at 3:13 pm
          tkoss
          Participant
            an update on nerve damage. I have never been able to get onc surgeon or oncologist to say much about my nerve damage. In particular I asked about an kind of PT to help. They smiled and nodded in the way the do.

            but

            once out of the room the nurse said this: they don’t recommend PT before 6 weeks because, in my case of a lymphodectomy, that PT could dislodge remaining melanoma cells from excision site.50

            • March 19, 2023 at 3:31 am
            LindsyDunnel
            Participant
              Hello how are u?
              • July 22, 2023 at 11:27 am
              Finem Respice
              Participant
                This reply has been marked as private.
                • July 30, 2023 at 2:50 am
                anigah
                Participant
                  thnks a lot
                  • July 30, 2023 at 3:57 am
                  tkoss
                  Participant
                    an update from Tkoss…i actually thought i had the best case going for me…….but….after recurence and a 2nd lymphedectomy I had nerve damage which settled to a manageable state….IOW no impairment but a feeling that never leaves my upper arms….

                    i had to do a 3rd surgery because PETSCAN* after 2nd Lymphodectomy* revealed melanoma still existing after 2nd suregery…….problem is the 2nd lympedectomy left scar tissue which could not be gotten behind on 3rd lympthodectomy. so there is some question as too efficacy of 3rd surgery.

                    but what i want to draw you attention to is that after 2nd and quickly there after 3rd surgery i had 4 rounds of ipi + 4 rounds of nivo. 3 weeks after last ipi infusion I had debilitatigng headaches requiring ER and hospitalization . Seems Ipi inflamed and enlarrged my pituatary gland causing the debilitaing headaches but also disruptions to pituartry activities as well as thyroid disprutpion. I am thus on homrmone presumbly for years to come. Of course it may not have been just ipi, but the combo of ipi + nivo but i am back on nivo since about 4 weeks. so that is too soon to judge…..SO if it happpens that you get debilitating headaches don’t wait around,..get to an ER stat that knows from headaches and that will do an MRI………i think they diagnososed me within minutes of review of case history becase they gave me some IV homrmones and the pain was gone in minutes never to return..so far its been about 8 weeks.

                Viewing 5 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