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NED after Stage IV & COVID-19

Forums General Melanoma Community NED after Stage IV & COVID-19

  • Post
    AshleyS
    Participant
      Hey friends,

      Peace to all of you currently fighting and those of you feeling anxious.

      I’ve been NED and off treatment since March 2017. I had metastases to my spine, liver, and lungs. I’m wondering if I should go to work this week; I teach and students will not be there, but teachers are expected to go to school to teach online.

      What are other NED folks doing? Although we are NED, are we at-risk because of the damage already done to our lungs?

      I’ve reached out to my doctor at MD Anderson, but I’m sure they are busy and have more important questions to answer. I’d love to hear what others are doing.

      Thanks.

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    • Replies
        AMcReader
        Participant
          Hi Anon,

          I had exactly this question and reached out to my former oncologist who is also now a friend. She told me because I was on immunotherapy my immune system was not compromised, but I also used radiation in my lungs and still have significant fibrosis which means COVID-19 could impact my lungs more. With that in mind, she advised my whole family to quarantine (even from work and daycare) if we can.

          Thinking of you and our whole MRF family.

          AMcReader
          Participant
            Hi Anon,

            I had exactly this question and reached out to my former oncologist who is also now a friend. She told me because I was on immunotherapy my immune system was not compromised, but I also used radiation in my lungs and still have significant fibrosis which means COVID-19 could impact my lungs more. With that in mind, she advised my whole family to quarantine (even from work and daycare) if we can.

            Thinking of you and our whole MRF family.

            HeidiZ
            Participant
              Hi, I’ve been stable stage IV since August 2017 and didn’t have any metastases to my lungs or brain but pretty much everywhere else including my liver and spleen. I never had radiation and my MSK doctor told me that I’m still immunocompromised because of my history of cancer and to take precautions.
              Heidi
              MelMel
              Participant
                I asked my oncologist the same question and she replied that she does not believe having melanoma is an underlying condition as far as Covid-19 is concerned. However, I beg to disagree.
                1. https://www.statnews.com/2020/03/03/who-is-getting-sick-and-how-sick-a-breakdown-of-coronavirus-risk-by-demographic-factors/
                Breaking down the Covid-19 risk with the most common co-morbidities, the scientists found that cancer raises the risk 3.5-fold, COPD 2.6-fold, and diabetes and hypertension by about 60%. Because it isn’t unusual for someone to have an underlying disease (especially diabetes and hypertension) but not know it, the last figure is likely an underestimate.
                Co-morbidities also raise the risk of dying from Covid-19. China CDC’s analysis of 44,672 patients found that the fatality rate in patients who reported no other health conditions was 0.9%. It was 10.5% for those with cardiovascular disease, 7.3% for those with diabetes, 6.3% for people with chronic respiratory diseases such as COPD, 6.0% for people with hypertension, and 5.6% for those with cancer.
                2. https://www.oregonlive.com/coronavirus/2020/03/the-coronavirus-turns-deadly-when-it-leads-to-cytokine-storm-identifying-this-immune-response-is-key-to-patients-survival-report.html
                For one thing, a new study indicates that Covid-19 triggers in some people something called a cytokine storm, where one’s own immune system goes berserk. This “virus-activated” immune response can be deadly, causing severe respiratory distress and the subsequent shutdown of multiple organs.
                Indeed, how one’s immune system reacts appears to be central to Covid-19′s severity.
                “The virus matters, but the host response matters at least as much, and probably more,” University of Iowa virologist Stanley Perlman told The Scientist magazine last month.
                For some people whose immune systems are compromised by age or for often-subtle genetic or environmental reasons, the normal immune response doesn’t retreat when it should. It goes into overdrive, leading to “a flood of immune cells into the lung.” This has a rapid cascading effect in the body.
                Key to the patient’s survival is their doctors quickly recognizing this is happening. Dr. Randy Q. Cron and Dr. W. Winn Chatham, in a report for Vox, wrote that —
                All Covid-19 patients sick enough for hospitalization should be given a cheap, quick, and readily available serum ferritin blood test. Indeed, elevated serum ferritin values have recently been reported in Chinese hospitalized patients with Covid-19. This is a good first screening tool for the possibility of a cytokine storm syndrome in sick patients with high fevers.
                The question then remains how best to treat a cytokine storm syndrome once it is identified. The treating physician is often placed between a rock and a hard place. Corticosteroids can be powerfully broad immunosuppressive agents, and they are inexpensive and readily available throughout the world. However, it can be frightening for a physician to treat a severely ill, infected individual with such powerful and wide-ranging immune suppression.
                Cron and Chatham pointed out that there are other, more targeted drugs available as well, though trials will be needed to figure out which ones work best for Covid-19.
                In China, coronavirus patients exhibiting signs of cytokine-storm syndrome reportedly are being treated with the anti-inflammation drug Actemra (tocilizumab). Actemra is used in the U.S. for rheumatoid arthritis.

                So depending on your underlying conditions, as well as your immune system response, you can see how this may not be the best situation for any melanoma treated immunotherapy patient NED or not.
                Hope this helps.
                Melanie

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