A new plan…
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A new plan…

› Forums › General Melanoma Community › A new plan…

  • Post
    • February 28, 2019 at 7:57 pm
    MarkR
    Participant

    Went back to see the oncologist today and after discussion with the radiologist they are convinced lung nodules are Melanoma.  I was expecting this so not much of a surprise.

    We then discussed treatment options and they decided recommencement of Nivo is the best option at the moment as I had previously responded well.  The plan is to start in a week or 2 and if it isn’t successful we will reintroduce Ipi (the Marsden has had success Re-challenging with the combo) and then there are a few clinical trials available as well.  For any fellow Brits – rechallenge with Nivo is not available under NHS treatment at the moment but I am fortunate to have private medical so will now be under the direct care of Prof Larkin.

    I am oddly relieved and happy with this plan as I was worried we were going to be talking about Phase 1 trials.

    Mark

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  • Replies
      • February 28, 2019 at 11:57 pm
      Bubbles
      Participant

      Hey Mark,

      So glad you determined a plan of action that you are comfortable with.  My onc, a melanoma Big Dog and international melanoma researcher, Dr. Jeff Weber, always said that his first recommendation for me should I recur would be to repeat Nivo (which I took under his care from Dec 2010 – June of 2013).    Hope this plan serves you well!!!  Celeste

      • March 1, 2019 at 2:19 am
      Mark_DC
      Participant

      Hi Mark – this seems good news so am glad for this. I always thought you might have been taken off nivo too early and that maybe ipi caused the problems (I think you were on the combo briefly last year).

      I dont understand why they dont allow a rechallenge. I had to drop pembro because of bad liver results about 2 years ago, but then tried again three months later and no problem. I dont think this is correct clinically, but this is the NHS. My sense is that your doctor knows melanoma and that Royal Marsden is one of the best places if not the best in the UK. But the NHS restriction seems far too severe. You are lucky to have private insurance.

      If you had gone a trial, might it have been a combo with nivo? Would that have been available? If so you might want to consider.

      I think things are working out better now, am happy you have a decent plan, but I would look for a trial in case of progression (hope never gets there).

      Best wishes

      Mark in DC a fellow Brit

        • March 1, 2019 at 5:20 am
        MarkR
        Participant

        Thanks both for your comments

        I was talking through these very issues with the Docs today.  Their view was that with the strength of response I had, in many patients the immune system is well charged and can manage the rest itself.  In my case they had to give me so many steroids and immunosuppressants to control symptoms that the effect was reduced too much.  That’s why we are starting Nivo only in the hope side effects are reduced to allow me to keep taking them.

        The good news is I have a strategy for treatment not just another line of treatment – at the moment we have Nivo then Ipi/Nivo then either Pembro or Lag 3 / Nivo and finally the ‘hail Mary’ phase 1 trial.  Depending on timeframes there may be more options as well.

        On the NHS issues, apparently none of the clinical trials were designed to demonstrate the effectiveness of Nivo Re-challenge so there is no clinical evidence to support financing of what is a very expensive drug.  My team are currently making the case that in privately funded patients there is evidence of success but this is difficult as it isn’t in a trial setting.  I feel very lucky to have private medical cover that gives me continuing access to these drugs.

        Cheers

        Mark

        • March 1, 2019 at 3:30 pm
        ed williams
        Participant

        hi Mark, there is actually some data on rechallenge of Pd-1 drugs based on keynote 006 trial based on drug Pembro (keytruda) the cousin of Nivo. Here are two links to the data which is small since 86% of those who stopped at 2 years did not progress. https://meetinglibrary.asco.org/record/159075/abstract

        • March 1, 2019 at 3:32 pm
        ed williams
        Participant
        • March 1, 2019 at 6:11 pm
        MarkR
        Participant

        Hi Ed

        Many thanks for the information

        However; I have spent the last two weeks terrifying myself reading results of clinical trials many of which aren’t great.  I’m in a place where I am happy and confident of beating this and can’t bring myself to read the trial data in case it ruins my confidence!!

        This is a first for me, but I’m going to try and relax for the next 3 months and worry about things at the next scan if I need to

        cheers

        Mark

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