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.

Question about delayed response

Forums General Melanoma Community Question about delayed response

  • Post
    TimCT
    Participant
      Hi All,

      I began treatment for my melanoma in February of this year, initially staged as 3C/4. The disease was confined to my lymph nodes, though it was extensive – both axial and cervical on my left side and a couple nodes on my right.

      The decision was made to start the ipi/nivo x 4 regimen, which I completed in May. There was noticeable swelling on the left side of my neck when we started, that shrunk noticeably after my first combo treatment, though it never completely went away, and swelling has steadily increased in that area since. My first scans post completion of the 4 infusions show overall disease progression. Some nodes appear smaller, some appear larger, but there is new progression as well, around my throat and under my jaw, as well as two very small (but very suspicious) spots in my upper lungs. We’re continuing with nivo by itself for at least the next 8 weeks, and if the disease at my throat becomes a problem as far as swallowing solid food, we’ll look at radiation in that area.

      My hope is, of course, this is a delayed response to the drugs or pseudoprogression, and I may yet respond. However, the new disease under my jaw has me worried that whatever partial response I had earlier is it for me. Could I still have a delayed response, even if new disease is appearing? I thought that a delayed response was more seen in existing tumors growing post treatment, and then taking longer to shrink, and not necessarily a factor when new progression is brought into the mix.

      As usual, looking for any positive news to hold on to!

      Tim

    Viewing 0 reply threads
    • Replies
        ed williams
        Participant
          Hi Tim, here is a link to last years ASCO were a peer panel was put together talking about various melanoma topics. In the link they talk about what option are out there if the patient is experiencing primary or secondary resistance. Now, I hope that your situation is just delayed and the tumor will respond soon, however if you need option down the road this talk is pretty good. They cover phase one/two trials of such new combination like Lag-3, Tim-3, Tigit, NKTR-214 (nektar therapeutics and old IL-2 drug that has been modified) as well as injectables like T-vec and TLR-9 and also the use of radiation. I hope you find the information helpful. Ed https://www.youtube.com/watch?v=J-19Vk_kA0k
            TimCT
            Participant
              Ed, thanks so much for the info. I’ll give it a listen. Dr Sznol did mention to me that there were new trials hopefully opening up that may be a fit for me should plan A prove to be ineffective – thank you for providing some hope with some concrete info!
              ed williams
              Participant
                If you are seeing Dr. Mario Sznol at Yale then you are in good hands. I have watched many of his presentations over the years and he is great at presenting information about what is gong on in the melanoma world. Good luck! Ed
                TimCT
                Participant
                  Yes, I am in his care, that’s just about the only thing I feel good about. I have nothing but confidence that he’ll steer me towards the best treatments available, and to trials that might be in the works. I guess this is just one of those tough parts lots of us go through, requiring us to show faith and patience even as the picture gets a little bleaker.
            Viewing 0 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