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.

One year under my belt

Forums Cutaneous Melanoma Community One year under my belt

  • Post
      Finished by adjuvant treatment for State 3C on 4/3 (NIVO every two weeks – 24 treatments). Previous scans were clear other than where I had my CLND (SUV is minimal and continues to go down). My scan on 6/19 had one additional finding – Small focus of mild hypermetabolic FDG uptake involving the left calf which is indeterminate. While this may be vascular, could consider an MRI to exclude underlying abnormality/mass.
      My primary site was top of left shoulder. My onco was not worried and has now scheduled me for a CT scan only in October for torso (no MRI).. I asked him should I worry and he said no. I have started walking at the YMCA in November so I don’t know if this could be causing this mild FDG uptake. Always something to worry about in this business!!!!
      So after 1 year, here are the side affects I had:
      Thyroid started to go up and then corrected and is still normal.
      I still have lichen planus outbreaks. They recently tried a steroid (methylPREDNISolone) 6 day step down. No relief – To be continued….
      Creatitine level was high last two treatment. Initially thought it was my b.p. med now they think it was the NIVO. Anyway, finally back down to normal.
      Vitiligo – last two treatments splotches on back of hands. It has now completely turned my arms white from the wrist to the elbows. I’ve cut some minor patches on my face. The neck is for the most part now white. Dumb me, went to see contractors building my house and I was just going to be there for a couple of minutes. Well, I lost track of time and I was there for 2 hours in the sun. Without sun screen. I paid the price especially on the Vitilogo. I’m not that light skinned so this stuff looks pretty bad. It’s an acceptable trade off and a constant reminder of this cancer. Note to self: Don’t ever do this again!
      That’s it and now the waiting game until October. Wishing you all the best on this journey.
    Viewing 1 reply thread
    • Replies
          Congrats on the year Steve. Sure sounds like Nivo did a good job of super charging your immune system.
            Sorry you are dealing with side effects, though vitiligo is associated with very positive results!!! Congrats on clear scans! c
        Viewing 1 reply thread
        • 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