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Definitely not what I expected

Forums General Melanoma Community Definitely not what I expected

  • Post
    Daisy2018
    Participant
    Hello fellow melanoma fighters and families. Since becoming a melanoma patient in February 2020 all news were bringing more bad news.
    I remember looking at my melanoma when I found it on my lateral part of the knee. It looked like something deadly. I thought that thing will kill me. It was Valentines day and I went to the bathroom and then I pulled my panties up and here it was staring at me the black deadly mark and I remember looking in the eyes of the young cute female doctor in her mid twenties who did that melanoma biopsy. She looked at me like when you can’t hide your sorrow.

    In two month after I had wide dissection abd stage of 1b the PET scan showed couple new lymph nodes which turned out to be malignant.
    After removal of those and some healing process we started Keytruda in September.
    I got results of the PET scan today.

    New diffuse FDG avid lymphadenopathy in the chest, a couple new FDG
    avid left pelvic lymph nodes, and new FDG avid pulmonary nodules and/or
    peribronchial lymph nodes, most compatible with metastatic disease. New FDG
    avid sternal lesion suspicious for osseous metastasis. Couple additional
    possible osseous lesions as above.

    2. Progression of distal esophageal uptake, possibly inflammatory though
    recommend clinical correlation.

    3. Presumed postsurgical changes in the left inguinal region, though again
    a couple new FDG avid lymph nodes are suspicious as above.

    4. Persistent uptake in the endometrium and adnexa, similar to prior and
    demonstrated no suspicious findings on interval ultrasound, presumed
    physiologic.
    <p style=”text-align: left;”>The PA of my oncologist said it looked like disease progression. I was hoping to get good news before New Years Eve. ????
    Its interesting she was mentioning SUV uptake of 8.
    I asked why do they think it’s bad since my last lymph nodes lighted up to 22  SUV. She said since it’s in multiple areas it correlates with progression. They recommend biopsy.
    I would think they would change treatment now.

    I was hoping I got away with a slight lymphedema in my thigh and no side effects of Keytruda .
    I thought it would be smooth sailing with Keytruda.

    </p>
     

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  • Replies
      JudiAU
      Participant
      I’m really sorry. I got that same look of sorrow when I had my melanoma removed. It was heart breaking.

      do I under stand you had a pet scan after 1B melanoma? Are you in the US? That isn’t common practice here but it sounds like it was beneficial. It does like early scans of progression but it also sounds like you are working with careful doctors.

      please keep us updated. I’m sorry to have you join this group but welcome to it.

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      Daisy2018
      Participant
      Thank you for responding.
      Yes, I did have PET scan after lymphedectomy  surgery. I asked my oncologist to do the scan because of couple suspicions concerns  I had.

      I was reading couple last days and found out that there is paradoxical response to PD-l immunotherapy medications like Keytruda, Yervoy/ Optivo where it progresses faster after treatment and the treatment should be stopped.

      Its  not just not working it makes it worse.

      What are the other options then, of any?
      Targeted therapy if I m still BRAF positive. Is there anything else?
      It seems like in a world of oncology or medicine there are lots of guessing.
      The treatment maybe possibly working and it takes time, maybe not working and should switched to a different one while still possible,  maybe making it worse and it should be stopped right away.
      I hope I will get meaningful response after biopsy.
      Even biopsy may not show how many bed guys are vs how many good guys are surrounding bad guys to eat them up.
      When my father was sick with cancer his doctors said he will not make it and offered hospice.
      I was able to see it with my eyes as a set back and refused hospice and nurtured him back to live and made his medical team to see it and do surgery, radiation, and chemo.
      3.5 years later he is still kicking. It’s 3.5 years of living! He has at least a year or two in him I would think maybe longer.
      Can anybody see if for me if it’s a set back or not?
      When it applies to you you see it with different set of eyes. Is it anxiety or what?
      I can be impartial to my own case.

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