NEDish but for how long…?
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NEDish but for how long…?

› Forums › General Melanoma Community › NEDish but for how long…?

  • Post
    • January 30, 2019 at 10:42 am
    MarkR
    Participant

    So been through a rough few months – first I finally had my thyroid nodule removed in November that had been delayed due to melanoma issues, only to find 3mm and 1mm Melanoma deposits in an otherwise benign thyroid nodule.

    In early January, after an MRI and consultation with a surgeon I had the large met removed from my arm.  Thankfully the surgery went well and I retained full use of my hand and arm that was a concern.  I also had a little recurring scab that had appeared on my head back in October removed only to find today that that was Melanoma as well!!

    So having stopped Ipi/Nivo at the beginning of May, due to side effects, I have reached NED status but through surgery rather than immunotherapy.  This new progression on my scalp is really eating at me and with my next scans in a couple of weeks I can’t help feeling my ‘NED’ status will be short lived.

    The question is what now??  Try to get back on Adjuvant Nivo or carry on with watch and wait and do patch repairs as I go until I really need it?  Seeing Dr’s in a couple of weeks for post scans to discuss, but instead of celebrating being ‘disease free’ at the moment I can’t help feeling things are about to take a turn for the worse….

    Sorry for the pessimistic post, and perhaps I really do need to just celebrate what I have at the moment, as I know right now things could be a lot worse, but the new met on my scalp is really eating me up at the moment and at 37 I was hoping for a bit more stability at least for a short while

    thanks for listening

    Mark

     

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      • January 30, 2019 at 4:10 pm
      Bubbles
      Participant

      Sorry Mark.  Melanoma really does suck great big green smelly hairy wizard balls, doesn't it???!!!!  I am glad you are NED.  Decreased tumor burden does provide a better playing field in which to beat melanoma no matter the treatment option.

      I understand how conflicted you must feel, given how I know I would feel in your shoes (as best as one can walk in the moccasins of another)!  But, I would certainly want to find/continue a treatment given what you've described.  I would probably opt to continue nivo alone if you can tolerate it (and most folks can, even after problems with the combo).  I would also look out for other options.  There are trials that are combining nivo and pembro (Opdivo and Keytruda) with other agents in hopes to improve their effectiveness…some may or may not exclude those that are NED.  I would also seek to have additional testing on my more recently removed tumor samples.  I presume you are not BRAF positive…since you didn't mention targeted therapy….but it never hurts to have that re-evaluated…not to mention have the tumor checked for more obscure things.  Maureen's husband (from this forum) found relief when his melanoma tumor was discovered to be positive for the HER-2 mutation, most commonly found in breast cancer, and responded well to drugs used for that.

      Not very specific, I realize, but these are the things I would be talking to my oncologist about.  I wish you my best.  Celeste

        • January 30, 2019 at 4:24 pm
        MarkR
        Participant

        Thanks Celeste – it does indeed completely suck but I suppose in many ways I should consider myself lucky to be in my current situation

        I’ve been kicking myself as I had meant to ask about the testing of the tumour but forgot to ask; although I did consent to medical research on the samples post op so hopefully this was undertaken.

        I really would like to restart Immunotherapy as I don’t feel I got a fair shot and compared with how you are treated in the US feel I have been short changed.  However; I am also worried that if I use that up I don’t have many options left so it appears to be go all in or keep something back in reserve.  I’m not quite sure I am ready to go all in at the moment!

        Other options looks like a good way to go and something I will try and discuss with them in a week or so.  A clear CT at this stage would be a welcome reprieve from a tough few months and it would be nice to come away with a plan rather than watch and wait

        • February 2, 2019 at 12:54 am
        Mark_DC
        Participant

        Hi Mark,

        I tried to reply to your earlier posts, some weeks back, but I failed the captcha – or rather I got it right and then it would not post. It would only happen with your post! Sorry 🙁

        Your news is mixed and, like you, am a bit of a pessimist (British spirit!!!). Like you, I have a sense (misplaced?) that immunotherapy working is somehow better than successful surgery – but this is probably wrong. However, you saw how successful Jubes has been and that surgery can work out. And also JennUnicorn who had to finish off with surgery and who is doing great.

        My personal view, like Celeste's I think, is to try to go back on adjuvant nivo. I dont agree with the argument about keeping things in reserve – I think some of the evidence suggests immunotherapy works better when not too many tumours to fight (experts can correct me on this). And I think Celeste has shown some reports where if you stop immunotherapy but then recur, then immunotherapy can sometimes still work.

        I think the question for you is whether you are allowed to do this. My sense (maybe wrong) is that they stopped your combo too early, and that maybe you should just have dropped ipi and kept going with nivo. Otherwise the UK advice and your treatment seems pretty good actually. Lets hope for a good CT but also why not discuss the possibility of adjuvant nivo. Or maybe a clinical trial based on this.

        Good luck and best wishes, and I hope this posts

        Mark

        • February 12, 2019 at 7:44 pm
        MarkR
        Participant

        Hi Mark

        thanks for your comments – I’m going to post the latest update under a new heading as not going that well…!!

        cheers

        mark

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