Home Forums Melanoma Diagnosis: Stage IV What next for SimonC the Kiwi

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  • #22212
    SimonC
    Participant

    Hi,

    Really keen for comment/views on my next steps. I’m a 53 year old in good health.

    I was diagnosed in Jan 2011, had four surgeries in the next 13 months to remove tumours from my face, bowel and hip.

    Have had a great run on the GSK Combi-v trial since Dec 2012, no side effects, but I have now progressed (I have two lesions in my mesentry – one doubled in size from 17mm to 35mm since the last scan so have been removed from the trial).

    I have been discussing the possibility of progression with my oncologist for the last while (I live in New Zealand) and recently a possibility of entering NCT02089685 – Safety and Tolerability of Pembrolizumab (MK-3475) + Pegylated Interferon Alfa-2b and Pembrolizumab+ Ipilimumab in Participants With Advanced Melanoma or Renal Cell Carcinoma (MK-3475-029/KEYNOTE-29).

    I am being told that there may be toxicity issues with the trial and that further recruitment is on hold waiting results.

    A few questions:

    Is anyone on this trial currently (and how are you finding it)?

    Is anyone aware of recruitment being on hold because of issues?

    Any thoughts about why I should/shouldn’t start the trial?

    Many many thanks

    Simon

    #65708
    JBunyan
    Participant

    Simon

    I am in UK where , so far, only Ipilimumab is available on HNS. In October last year my Professor of Oncology tried to get me on to a Pembrolizumab+ Ipilimumab trial, but I was not accepted due to unrelated bladder TCC the previous year, but he pointed out, as did Dr Larkin at the Royal Marsden, that this combination had the best results at that time, with 50% success. I then had the 4 dose course of Ipilimumab, which, so far, has worked in my case. The side effects , if you read about them can be severe, but I had none, except for arthritis of some joints about 3 months later.

    I am NOT a doctor but in your shoes I would go all out for the Pembrolizumab+ Ipilimumab option as the cost if you had to pay would be about £100,000. I would risk any side effects for the chance of a remission.

    #65709
    SimonC
    Participant

    Many thanks and totally agree with your comments (ipi in NZ runs $140k and is not subsidised or covered by insurance).

    My concern is “hold on this trial due to toxicity issues”.

    Catherine are you aware of any issues?

    I’m very conscious that after progressing on GSK Combi-v melanoma might want to have a party in my body that I really haven’t invited it to :D

    I am also aware that immumotheraphy treatment can take 3 – 8 months to kick in.

    This is the perfect trial for me at the moment.

    Kind regards

    Simon

    #65710
    Bateman
    Participant

    Hi Simon,

    I too live in NZ, in Auckland and my dad is 61 with advanced melanoma. His Oncologist Mike McCrystal is involved in various drug trials in NZ and very up with the play on what’s happening trial wise in the Melanoma world. You could potentially contact him for a second opinion/ more info on this trial.

    I also wanted to ask where is this trial taking place and when? At this stage my dad is awaiting his next CT scan after whole brain radiation to see what his tumours are upto before deciding next steps treatment wise so it would be good to know more about this trial if he needs to do something post Christmas….especially with the cost of ipi, he’s been quoted around $200,000+ for this treatment if he needs it.

    Hope you don’t mind me asking.

    All the best getting the info you need about the toxicity of this trial drug.

    Cheers,

    Penny

    #65711
    Catherine Poole
    Keymaster

    I believe the toxicity lies in the Peg-interferon, not the other two therapies, ipi and Pd1. Although combining all could be challenging for toxicity. IPI and PD1 together have shown toxicity in trials. You can (and might have to) drop out if the side effects are hampering your life. They are trying to find a need for the interferon drugs as most believe they will not have a market share when other stage III therapies are approved. I couldn’t find many other trials in NZ that were recruiting. I would take Penny’s advice or see if you can’t get therapy in Australia where IPI is approved. I am not sure of its status in NZ but will check that out too.

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