Home Forums Melanoma Diagnosis: Stage IV Feeling Helpless

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  • #21925
    mazz75
    Participant

    Hello Catherine

    Please help at Royal Marsden they oferred no more options. They said thet her tumors are very aggresive . She has tried only Zelboraf and Yervoy and they excluded the Braf/ Mek combo since its not approved in EU. She has 2 tumors in her brain and the oncologist said it’s very unlikely the surgeon will operate for the second time. I need guidance about what can be done to travel to US and where to go , appointments ect. Can you give me the prefix maybe I can call your help line as I tried with no sucess.

    Please help I am desperate.

    #64130
    Catherine Poole
    Keymaster

    Email me at: cpoole@melanomainternational.org and we can discuss options. Can she travel ok? Have you tried Oxford? Mark Middleton is a great doctor there. But email me and we can discuss. You can also try our regular number: 610-942-3432

    #64131
    Violeta
    Participant

    Maggie, I am so sorry to hear this. I wish you a lot o strength to fight for her. I am praying for you, for us.

    #64132
    mazz75
    Participant

    Thanks Violetta

    Thanks your prayers and support are much appreciated.

    Unfortunately in Eu medicine is harder to get and I am not sure if she is fit to fly to US.

    We have to stay strong what ever happens.

    You are in my prayers too

    Maggie

    #64133
    tcell
    Participant

    Hi,

    Sorry for the terrible things you are going through.

    Just to let you know (I think Catherine mentioned this in another thread).

    I have been diagnosed with stage 4 10 weeks ago and would not be here anymore with the tumor load I had without GSK BRAF/ MEK.

    I live in Austria, so also EU. I am being treated at Vienna university hospital. I get Tafinlar as a standard prescription drug and MEKINIST through the GSK named patient program.

    I cannot think of any reason why this should not be possible in the UK.

    I do not know anything about the policy of the NHS but just to let you know that this seems to work fine over here. Are you sure that your treating doctors are well informed about the availability of these drugs? It cannot be a general EU problem as it seems to work here and tafinlar is even approved and covered by the insurance.

    Otherwise maybe it would be enough to go to France if your insurance pays for it.

    BRAF / MEKINIST improved my situation within days so I pray for you that you can find a way to get it!

    #64134
    mazz75
    Participant

    Hello

    Thanks for your reply.

    The oncologist in London said that since she already took Zelboraf it’s unlikely the combination will work and that her brain tumor is big. However we are willing to try anything at this stage.

    Who is your oncologist in Vienna or France? and how long did it take you for the medicines to arrive?

    We are from Malta being treated in London as in our country we do not have a melanoma specialist.

    Regards

    Maggie

    #64135
    tcell
    Participant

    Maggie,

    I am not an expert, just a patient so I am unable to tell wether it makes any sense at all to try dabrafenib after she has progressed on Zelboraf.

    Maybe Catherine knows more about this.

    My melanoma expert is Dr. Christoph Hoeller of the Medical University of Vienna Institute of Dermatology and he is very competent.

    However, I do not think that it is easy to get an appointment soon there. Might take a few weeks. Then i do not know what he would say and even if you get the presrciption it could take a few days to get the meds.

    I do not know what you have discussed with Catherine but maybe in your case it would be better to get a second opinion from somebody close by as soon as possible as a first step.

    I cannot tell you how sorry I am am for this terrible situation, I guess most important of all do not loose faith and hope! You and your family are in my prayers!

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