Forum Replies Created

Viewing 15 posts - 1 through 15 (of 108 total)
  • Author
    Posts
  • in reply to: about brain mets #67679
    Gilly
    Participant

    I hope the Gamma knife goes well and please do post updates for the MANY Eastern Europe patients who have few options !

    in reply to: NRAS, ERK, and other pathways: what’s new? #67576
    Gilly
    Participant

    I think Gal Markel is brilliant – here is his TED talk : https://www.youtube.com/watch?v=tzaUfM0MfaQ

    in reply to: TIL Treatment #63570
    Gilly
    Participant

    I do get what you are saying Catherine – but here we are talking beyond the available treatments – when all else has failed .. Ipi, anti PD1, targeted therapies …- yes we need more research but desperate people dont always have the luxury to wait – also Ipi , “from clinical trial evidence” is not reimbursed for Braf positive patients in France – it is available post-PD1 for Braf negative patients (because after PD1s they have little else) – we are trying to change this (because we believe that patients should be able to access all possible treatments even if the response rate is 15-20% like Ipi !)

    in reply to: TIL Treatment #63568
    Gilly
    Participant

    Private TILs treatment under Prof Hawking at the Christie in Manchester, UK, is around 70.000 pounds Stirling – so considerably cheaper than the US and interestingly around the same price as Ipilimumab – The Tils trials in Holland and in Denmark are only accessible for Dutch/Danish patients for the moment.

    in reply to: My sister’s journey #66486
    Gilly
    Participant

    Great story Tom – my husband has been on the Combi V trial 31 months – 28 months on the Vemurafenib arm and then recently 3 months on the Dab/Tram arm – all his tumours reduced to almost nothing on Vem/Zelboraf – the side effects were tough but he worked full time – eventually after several drug-induced new NRAS melanomas and having had enough of the hyper sun sensitivity , he asked for Crossover – the Dab/Tram has been such a relief – NO side effects except fatigue ! So far there are probably as many people on the “Tail of the curve” of Targeted therapies as Ipi complete responders – time will tell ! all the best to your sister !

    in reply to: Progression on PD1? Here is a new option #67501
    Gilly
    Participant

    Thanks Catherine , is this the Sun et al paper ?

    in reply to: Progression on PD1? Here is a new option #67498
    Gilly
    Participant

    does this mean you can effectively get a rechallenge of Pembro ??

    in reply to: Blood/brain barrier: what we know #67491
    Gilly
    Participant

    we will know more when the Combi MB trials report hopefully !

    in reply to: Lori and Tils treatment #67067
    Gilly
    Participant

    Thanks Catherine – she has been told this is her last chance – she is Braf -ve and has “done” everything else – she has a great team and they are behind her ..

    in reply to: Lori and Tils treatment #67065
    Gilly
    Participant

    Tils has worked for some people – we had at least two present at the Brussels conference and we know when we have reached the end of standard treatments most of us, if we are well enough, will try the next thing ! Sadly many stage 4 patients dont have the luxury of time – these trials are going on both as Tils and Dendritic cell, but they have an age limit of 50 – Pati had the same wish to try this option. This is the risk of NOT taking risks in Melanoma – the title of the MelanomaPatientsNetworkEurope conference last week – Patients want to make the informed decision about what risk they take …

    in reply to: TILs openings for European patient #66801
    Gilly
    Participant

    Hi Catherine – uk patient – too old (late 50’s) for european trial TILs – still looking though – just wanted to see what options there are in the US – heard that at one site the treatment was a trial (so free) and the costs would be accommodation/extras etc – the patient is looking for alternatives but has done pretty much everything !

    Gilly

    in reply to: Zelboraf Patient Update #66688
    Gilly
    Participant

    my husband is 27 months on Zelboraf – its encouraging to see there are others out there doing well – how is the fatigue ?

    in reply to: Great New Webinar to see! #65909
    Gilly
    Participant

    Really great Webinar – Thanks Catherine !

    in reply to: PDL trial (Genentech) in Global spots #65767
    Gilly
    Participant

    Do you mean the Roche MPDL3280A , Catherine ? The GO29322

    2014-000812-33, NCT02174172 – it says inclusion for melanoma BUT I can’t find it anywhere in Europe – do you have any more info – Roche is not the most forthcoming !

    in reply to: Accessing anti-PD1 therapy in europe #65091
    Gilly
    Participant

    BMS has told me that they are not taking any new patients in France onto Nivo trials but the Merck expanded access is available if you fulfil the protocol criteria.

Viewing 15 posts - 1 through 15 (of 108 total)