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Still NED + Covid vaccinated
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Still NED + Covid vaccinated

› Forums › General Melanoma Community › Still NED + Covid vaccinated

  • Post
    • January 30, 2021 at 1:31 pm
    jennunicorn
    Participant
      Hello hello!

      It has been a long time since I’ve come to the forum. I just wanted to give an update to anyone still around from back in the day when I frequented this forum often… I am 3 years NED! (first diagnosed at age 28 stage 3, then progressed to stage 4 within a year… I just turned 34 last week)

      I had issues with fatigue and joint pain for quite a while post-treatment. I want to say that I have finally broke through those issues and no longer have any lasting side effects from immunotherapy. (I did 2 years of treatment, Yervoy/Opdivo).

      I am getting some flashbacks of post-infusion side effects today… yesterday I got my 2nd dose of the Pfizer COVID-19 vaccine (I work in healthcare, and the past 11 months have worked in the field of COVID-19 testing). I had no side effects at all with the first dose. The second one has me dragging my butt around today. Fatigue, joint pain, body aches, headache. But, I know this will only last a day, it’s worth it.

      I am now working with our vaccine team at work to help lend all of the knowledge I’ve gained from standing up COVID-19 testing sites. It is a challenge and a half dealing with the government in order to get vaccines, something we in healthcare in the US are not used to at all, if we could order the vaccines directly we’d have so many more people vaccinated by now. But, I am keeping my head up, working long hours, and doing everything we can to pick up momentum and get more vaccines in arms around the country! One day at a time.

      Anyway, I wanted to send some positive vibes to anyone here who needs it right now. It’s been a whirlwind of a year and I cannot even imagine having to deal with being in the thick of it with melanoma in a pandemic world. It’s been weird enough doing my 6 monthly scans and oncology visits.

      Much love to all

    Viewing 4 reply threads
    • Replies
        • January 30, 2021 at 5:47 pm
        Bubbles
        Participant
          So good to hear from you, Jenn!!!  Glad to know you remain NED and are COVID vaccinated!!!  That is wonderful.  I too remain NED (heading into 11 years post Stage IV) and am 1/2 vaccinated!  HA!  We seem to be living parallel lives.  I am working on a vaccination team as well.  We are working furiously – giving 110 to 160 vaccines every hour in a drive-by site and hoping to ramp up much further!  I had the same sort of post immunotherapy infusion deja vu moment when my husband described how he felt (fatigue, arthralgias, etc) in the first 24 hours after his second COVID vaccine dose.  He is right as rain now.  I should be getting my second dose in a couple of weeks and if that’s how I feel – so be it!  It’s better than the alternative!  Thanks for all you are doing.  Take good care.  celeste
            • February 1, 2021 at 12:33 am
            jennunicorn
            Participant
              That is awesome Celeste, so good to hear from you, and hopefully we will continue to ramp up and get more vaccines in arms day by day!!
            • January 30, 2021 at 5:57 pm
            Mark_DC
            Participant
              Hi Jenn,

              I am glad you are doing well. It’s a pity you left as you had lots of good questions, and advice too – and quite a difficult time too because I think in the end you had to rely on surgery as the immunotherapy could not do it all. But it worked! And i think this means really you had neo-adjuvant treatment – having immunotherapy before surgery which seems a good approach (because then the immunotherapy knows what to attack elsewhere in the body, that’s my understanding!).

              For me immunotherapy did not seem to work and I was heading for surgery too, like you, but then we added TVEC and that seemed to work. So I was following your case and wondering how you were doing – and the fact that probably you are doing well is a good sign.

              I do wonder though, whether those of us on the Board can jump the line to get the vaccine??? 😊I would be quite happy to drive down to chatanooga or maybe risk the flight to SF for the vaccine! 😊 I hope both of you do well and we can get this vaccine out, and also have good systems in place in case we need to repeat vaccines or give boosters.

              Well done and thanks for writing

              Mark

                • February 1, 2021 at 12:36 am
                jennunicorn
                Participant
                  Hey Mark! Good to hear from you and so glad to hear there was a treatment that worked for you too!
                • January 30, 2021 at 11:04 pm
                JudiAU
                Participant
                  Thanks so much for updating us. I love to hear about NED patients and those who have left side effects behind. Also, I a. Really glad to hear how you fared with the vaccine.
                  • January 31, 2021 at 1:56 pm
                  tkoss
                  Participant
                    my onc suggested that fatigue would accompany 2nd dose of Moderna
                    • February 1, 2021 at 11:38 pm
                    lkb
                    Participant
                      Congratulations, Jenn, O fellow San Franciscan! I’m glad to know you’re still NED and also vaccinated. Like Judi, I welcome NED sightings–very encouraging. Had my 3-month scans today and am in that delightful overnight period of waiting for results. Not thinking about it. Not at all. Nope, not me. What scans? Sigh. Sending all best wishes.
                        • February 2, 2021 at 12:23 am
                        jennunicorn
                        Participant
                          Sending positive vibes your way as you await your results!
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