Progression
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Progression

› Forums › General Melanoma Community › Progression

  • Post
    • January 4, 2019 at 4:32 pm
    MarkR
    Participant

    Hi All

    quick background is a large Met (4cm) in my arm started me on Ipi / Nivo as a stage IV patient.  Had 4 infusions of different strengths before pituitary and liver issues resulted in me being taken off treatment.

    3 months after coming off treatment my first scan showed 15-20% reduction and my second scan 3 weeks ago showed stable.

    I pressed to reconsider surgery on the Met in my arm and went for an MRI and consultation with surgeon today.  While they clarified that the MRI showed far more detail than the CT scan they believe the Met has grown since my last scan so surgery is scheduled in 2 weeks to remove it.  It’s going to be quite nasty as nerves, muscle and veins are all involved but they are quite adamant that is the way forward.

    On completion of the surgery I very much hope to be NED.  To achieve NED should be good news but I am very worried about the growth of this Met and what that means for further progression elsewhere.

    Would appreciate any thoughts or good news stories If anyone has any to share

    best wishes to you all

    Mark

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  • Replies
      • January 4, 2019 at 4:48 pm
      AMcReader
      Participant

      Hi Mark, I’m so sorry to hear about your progression but happy to hear that you may be NED so soon! I’m just chiming in to ask if your doctors have considered intralesionals at all? I do not have personal experience with intralesionals but it may be a good way to give your body the extra punch it needs to stay NED and, if the intralesional doesn’t work, you’d still have suregery as an option. Just something to consider.

      Take care and keep us posted!

        • January 4, 2019 at 4:49 pm
        AMcReader
        Participant

        No idea why that posted as anonymous! This is Amanda (amcreader).

        • January 4, 2019 at 5:18 pm
        MarkR
        Participant

        Hi Amanda 

        thanks for your reply – I think once this one is removed there won’t be anything to add intralesionals to although will ask if it is still viable

        cheers

        mark

        • January 4, 2019 at 7:43 pm
        AMcReader
        Participant

        Hi Mark, Sorry for the confusion, I meant to imply that instead of removing it surgically you could try an intralesional first and then resort to surgery if needed. 

        • January 5, 2019 at 4:09 pm
        MarkR
        Participant

        Thanks Amanda – while not overly happy at least surgery will get me to NED.  My bigger worry is probably that progression in this lesion will lead to progression elsewhere.  Have read a few posts from others and it looks there are others who have had similar experiences but also had good periods.  I think I will just have to hope for a nice long period after surgery!!

        regards

        mark

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