MRF-Logo2019-Horizontal-RGB
Stopping immunotherapy early and worried
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.

Stopping immunotherapy early and worried

› Forums › General Melanoma Community › Stopping immunotherapy early and worried

  • Post
    • May 16, 2021 at 2:32 am
    JackieH
    Participant
      I was on Dab and Tram but progressed and then had 4 ipi/ nivo and  3 single nivo and it has worked , I am currently NED. However, after 3 single nivo it started to affect my healthy liver and pancreas ( also thyroid but that is treatable) My onc thinks it is too risky to my healthy organs to continue.  Very worried about stopping, had anyone had to stop immunotherapy early and stayed stable?
      many thanks!
    Viewing 3 reply threads
    • Replies
        • May 16, 2021 at 7:46 am
        ed williams
        Participant
          Hi Jackie H, I would point you in the direction of 5 year survival data from checkmate 067 , the phase three trial of ipi+nivo that led to it’s approval back in 2015. Two section of the article published in New England Journal of medicine stand out, first in the “results section” go down to “outcomes after treatment” you will find that in the ipi+nivo group and 74% not receiving subsequent treatment free interval. Second part of article which goes into your question specifically is in “Discussion Section” 5 paragraph that starts ” No new safety signals” goes on to talk about melanoma patients who had to stop early due to IrAE’s (immune related adverse events) like colitis etc. No difference is found between survival of those who had to stop early or who continued. Here is the link. https://www.youtube.com/watch?v=wwup6wOizdo&list=PLOnM_erAQqIBK-ASSZujKruJemGc-FQQR&index=6
          • May 16, 2021 at 8:47 am
          JackieH
          Participant
            Thank you so much Ed! Very reassuring and very kind of you to take the time to reply with the links.
            • May 16, 2021 at 10:53 am
            Bubbles
            Participant
              Sorry you are dealing with this, Jackie.  If it helps, here is my take on basically the same info Ed shared from the CheckMate 069 trial –

              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

              There is also this from 2019 – a retrospective study that looked at folks who had to stop anti-PD1 as a single agent after side effects, found durable benefits –

              https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/09/melanoma-peeps-with-durable-benefit.html

              Hope this helps.  I wish you my best.  Celeste

              • May 16, 2021 at 12:32 pm
              JackieH
              Participant

                Thank you so much Celeste. Very interesting read. I will try to enjoy not having side effects for awhile!  Really appreciate your message.

                best wishes
                Jackie

                 

            Viewing 3 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