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.

Indolent Melanoma CDKN2A+ CT Scan Tomorrow.

Forums Cutaneous Melanoma Community Indolent Melanoma CDKN2A+ CT Scan Tomorrow.

  • Post
      I didn’t expect 15 years later to gain so many new insights into my case. I came up CDKN2A positive and after over a year of insurance battles I’m finally getting a CT tomorrow focused on pancreas. 6mm depth Nodular 15 years ago was the highest staged primary but since then I’ve had several SSM’s and an insitu.

      I got to thinking more and asked around about slow melanoma’s.

      I had severe hypothyroidism found about 5 years after my first encounter with Melanoma. My TSH spiked up to 56 (not a typo …). We got it down to range 0.9 to 2. If I don’t take thyroxine my TSH creeps back up.

      Has there been any research into metabolism and melanoma? The more I put the puzzle pieces together the more it becomes logical that a failing thyroid could have saved my life.

      The longer time goes on and the more I reflect the thyroid issues came on around a time of severe tiredness. I was diagnosed with Narcolepsy with AHI 30 (awoken once every two minutes), I was bradycardic BPM 59, but treatments didn’t work and was then correctly found to have Sleep Apnea. That will over time drive down and destroy thyroid function.

      All of that is now under control … I am left still with FAMMM and CDKN2A+ but I just wonder if metabolism can be a key factor in the survival outlook.

      What’s happening with my holistic medical history that’s leading me to be able to tell my story of melanoma with no upstaging (so far over 15 years)?

    Viewing 1 reply thread
    • Replies
          Sorry I have no insights for you. My mom also has the same mutation but after talking to two oncologist found there is no targeted treatment for this mutation. So I dont know what benefits it adds knowing that you have a CDKN2A
            There is much we don’t yet understand about melanoma generally. We certainly don’t completely understand why some melanoma peeps respond to immunotherapy when others do not, why some experience rapid progression and some of us experience more indolent disease. Is there something specific to the tumor type that we have yet to appreciate? Or is it something present in the individual’s immune system? We don’t know. Given the fact that I have been LIVING in melanoma world for 17 years – despite progression to stage IV – and been an avid student of all the literature during that time, as well as getting to know many melanoma peeps across the globe, I would say that the personal conditions you have experienced are NOT part of your indolent disease, as they are not consistent with any described in the literature nor in the peeps with whom I am personally familiar. That said, given the fact that no one knows, what do I know!?? Ha! Still some researchers have been trying to understand this condition. Here are some reports if you are interested:

            I wish you my best. Celeste

        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