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Update on Yesterdays Scans ( Finally some good news ) 80% Response
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Update on Yesterdays Scans ( Finally some good news ) 80% Response

› Forums › General Melanoma Community › Update on Yesterdays Scans ( Finally some good news ) 80% Response

  • Post
    • March 3, 2021 at 8:52 pm
    THMoore
    Participant
      To my warrior team.  It’s been a while since I have posted. I hate that we lost all our profile information.  It’s like everyone has to start over describing their stages and history.  Anyway, I was diagnosed March 1 2020 after 5 misdiagnoses.  I had a lump pop up on my neck, and during surgery at MDA, it was determined I had melanoma of the Parotid gland.  No skin cancer ever.  So I am a Non Primary, and non V600.  Anyway, fast forward to today one year later, I have had surgery, and 2 weeks after 30 grey of radiation, It was determined melanoma had spread to 5 nodes of my neck. Started NIVO immunotherapy and after 3 months, scans showed 5 nodes in my neck were clean but I gained 5 Non Active nodes in my lungs, and a 3CM Active tumor in my liver.  Started IPI/NIVO and after the third infusion, developed colitis, dermatitis , arthritis, hypothyroidism and other things.  Scans were ran in November of 2020 and I was told I had Stable disease.  The 3 infusions basically almost killed me, but I was determined to finish the fourth dose, so in mid January of this year I did.  WHEW.  So I was rescanned a couple days ago and the oncologist explained, the following:

      Neck is clear, Brain is clear, Liver tumor is completely clear ( Prays GOD ) but the nodes in my lungs have grown too 6MM.  The doctor was highly surprised but confused about my lungs.  Tests were ran and it was determined I have severe inflammation from arthritis, DUH, I can’t even dress myself due to the pain.  Also, it was determined I have a severe sinus infection and chest inflammation.

      I remember a post from Bubbles discussing delayed responses.  MDA was ready to start me on a clinical trial since almost nine months had passed with continued small progression.  But now, I am going to continue with NIVO.  The oncologist is thinking and hoping the growth of the lung nodules is due to all of the inflamation in my chest and body.  I pray he’s right.  I will find out in 2 months.

      Anyway, what I am trying to say to each warrior out there, please don’t give up.  Fight the good fight, listen to Bubbles, and all the other great resources on this forum.  I say this because I was ready to call in my chips but I kept thinking of all of you, my wife and my 17 year old grandson.

      Love and Angel Hugs,

      Trent

       

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        • March 4, 2021 at 5:40 pm
        Bubbles
        Participant
          Oh Trent,

          Why oh why must melanoma be such a mixed bag????!  But, given that it so often is – I am glad to hear your good results!!!  I am very hopeful that your lung nodules are related more to inflammation than progression.  Anyhow, I think your onc is onto a good plan for you.  You can always change direction if need be.  But, I’ll be keeping all fingers and toes crossed for you for the next two months!  SO, on this, my favorite day ~ MARCH FORTH!!!!! ~ with hope.

          Yours, celeste

          • March 4, 2021 at 6:08 pm
          THMoore
          Participant
            Thanks for the kind words Miss Bubbles. The PET SUV uptake in all 4 nodes was 1.5, which they say is very low and hopefully inflammation.   ❤️
              • March 6, 2021 at 12:29 pm
              THMoore
              Participant
                Miss Bubbles,

                what scares me is the PET radiologist explained the growth of the lung nodes was probably due to metastasis.  They did explain they are confused because the size of the large liver tumor and all neck nodes were no longer cancerous.  The live tumor is there but they explained you can see the outline but everything else is transparent.

                my question is can inflammation cause lung nodules to increase in size.  3 to 6 MM and 1 is 9 MM.  In the past they were always 3 MM.

              • March 5, 2021 at 1:50 am
              chrispl1974
              Participant
                Fantastic news. Lets hope your  lung nodules are related more to inflammation than progression.

                VERY VERY HAPPY FOR YOU !!!!

                • March 6, 2021 at 12:42 am
                MelMel
                Participant
                  <p style=”text-align: left;”>I am so happy for you Trent! And I remember not too long ago, you were doubting yourself if you can do it?</p>
                  As for the arthritis and such, in time the aches and pains do get much better and we return to a “new normal”.

                  In the meantime, we shall keep our fingers crossed that the uptake is inflammation.

                  Melanie

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