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  • #21652
    mazz75
    Participant

    Hello dear Catherine

    My sister will have an operation tomorrow to have 2 brain mets surgically removed in London.

    I asked someone from the staff at the melanoma clinic at royal Marsden if she qualifies for anti Pd1 and they said no as she is not a Uk resident. I know this is not the case but what can I do?

    Can you send me the trails available at the Marsden so I look at the exclusion criteria. She has more options left as she only took Zlboraf and was Ned for almost a year.

    It is not an easy situation and we are trying to give her the best available . Please help!

    #62895
    Catherine Poole
    Keymaster

    The IPI naïve are opening in London, here is the list:

    UK Ongoing Larkin, James London 442078082132 james.larkin@rmh.nhs.uk

    UK Ongoing Chao, David London 44207794050032300 dchao@nhs.net

    UK Ongoing Middleton, Mark Oxford 441865235315 mark.middleton@oncology.ox.ac.uk

    That means she has not had Yervoy/IPI prior. I would also try Dr. Middleton in Oxford, a great doctor with compassion listed above too. I’ve listed emails and phone numbers. She would have to have stable brain mets and be 30 days out from this treatment.

    I hope things go well for you.

    #62896
    mazz75
    Participant

    Does that mean she has to wait 30 days after the operation or with out any medicine?

    Correct she has not yet tried yervoy/ Ipi.

    #62897
    Catherine Poole
    Keymaster

    Normally the trials want you to be stable with any brain mets which they will know from a scan. I would talk to the individual sites to see what they require but usually 30 days out is expected. It doesn’t mean you can’t go ahead and inquire about the trials and whether there are slots, etc..

    #62898
    mazz75
    Participant

    Dear Catherine

    The operation is ready and it was successful the surgeon managed to removed all visible mets.

    She is already up thanks God.

    The surgeon said they will do another scan in 3/ 4 weeks time to check if all is fine.

    If she has to wait 30 days its better if she tries Yervoy not on trial.

    I hope our government pays for such treatment as there is no way we could afford such an expensive medicine. Kindly keep me posted on any information you manage to get.

    Thanks a lot your help is much appreciated.

    #62899
    Catherine Poole
    Keymaster

    I believe for these trials you need to NOT have taken Yervoy, so be careful for her to go ahead on that as it may disqualify her for the PD1. Please get in touch with these trial leaders and get their advice before going on the Yervoy. Happy to hear she is up and about already! PS I heard from the Cambridge site and that site also has the refractory (failed Yervoy) PD1 vs chemo trial going on.

Viewing 6 posts - 1 through 6 (of 6 total)
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