MRF-Logo2019-Horizontal-RGB
Opdivo wrap up!
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.

Opdivo wrap up!

› Forums › General Melanoma Community › Opdivo wrap up!

  • Post
    • August 6, 2018 at 4:09 pm
    neilarama2017
    Participant

      This is mostly just informative for anyone on or considering starting Opdivo.  

      So after being NED for 1 year from stage 3B with 1 month radiation.  I am finishing up my Opdivo treatment this week.  I was getting an infusion every other week for 10 months and opted to switch to once a month for the last 2 treatments as it has recently become available.  I have noticed no new side effects from the change of treatment times.  The only side effects that I did encounter durring my journey were pimples here and there, a small rash after my first infusion, headaches (pretty strong ones, especially right when waking up) that were cured with tylonol and moderate tiredness in spirts.  I really did not change my diet that much as that much as im not a veggie kind of guy.  I did abide by the very limited use of alcohol and not smoking as I like a cigar every once in a while.  It will take 3 months from this point for the medication to be out of my system for the most part, then hopefully I can start to get my energy back.  I have to say that vs. just sitting and waiting this was a great option for me.  Everyone is different but I feel that it has increased my hope factor which in turn helped to cure me.  That, support of friends and family and faith have gotten me to the point that I am at.  Loving life and trying to enjoy every moment.

       

    Viewing 1 reply thread
    • Replies
        • August 6, 2018 at 6:01 pm
        Threefitty
        Participant

          This is very similar to my experience, 8/17 – 7/18 after a 3b diagnosis. Change "pimples" to itchy, patchy rashes and take away the headaches, but add a bit of post treatment day fatigue, and that is about it. 

          Did need to go on Synthorid at 150 mg/day.

          Topical treatment solved the itch. Had no radiation.

          Agreed on "glad to be doing something". 

          6 weeks since last infusion I still get itchiness. Good to have a time frame on that passing.

          The hardest thing now is simply explaining what "adjuvant treatment in a Stage 3 melanoma setting"  means to outsiders and that you'll never know if it worked until you know that it didn't (and no its not remission). I pretty much say "now I can win one of 2 coin flips, instead of having only one coin flip". That may not be statistically correct, but most people get the point.

          I honestly don't understand presenting a balanced decision making framework of "do this or wait and watch" unless you are 75+ y/o. It's officially a no brainer, right?

          • August 10, 2018 at 4:47 pm
          rpm773
          Participant

            Ok, so I'm at the beginning of this road.  Stage IIIc diagnosis starting in my leg, but the excision surgery was successful and only 1 or 2 SLNs showed disease (.35mm tumor).  The ensuing PET scan showed no additional disease

            Last month my oncologist gave me the option doing immunotherapy, which will be Opdivo. I'm meeting with her Monday and plan to go ahead with it.

            I was ecstatic with the oncologist saying, last month, that I was "essentially cured but with reservations", but have since sunk back into pessimism.  I'm glad you were able to take some emotional value from the treatments for minimal cost (in the form of side effects), hopefully I can do the same

            Stay well!

              • October 13, 2018 at 3:10 pm
              Pwest55
              Participant
                I was diagnosed 2B back in July. It was a nodular melanoma that was 9 mm thick and had a very high (10-12) mitotic rate. I wanted to be proactive sp zi joined a clinical trial with opdivo. After one treatment I had fatigue and little appetite. Blood tests before second infusion should thyroiditis. My choice was permanent thyroid damage or dropping out of the trial. I dropped out. Now awaiting tests to see if my thyroid recovers.
          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