Home Forums Melanoma Diagnosis: Stage IV LGX 818 anyone else on this trial med?

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  • #20718
    Deee
    Participant

    I have been on this trial August 2012. There are not many people in Australia on this trial and I would like to reach out to anyone who is using the trial to discuss the side effects and usefulness of the medication so far.

    There is little information from the hospital, since this is the first human trial.

    #57224
    Catherine Poole
    Keymaster

    I hadn’t heard of this, here’s some info from NCI: trial listing: http://www.cancer.gov/clinicaltrials/search/view?cdrid=728588&version=HealthProfessional&protocolsearchid=10229932

    Raf kinase inhibitor LGX818

    An orally available Raf kinase inhibitor with potential antineoplastic activity. LGX818 specifically inhibits Raf kinase, a serine/threonine enzyme in the RAF/mitogen-activated protein kinase kinase (MEK)/extracellular signal-related kinase (ERK) signaling pathway. By inhibiting the activation of the RAF/MEK/ERK signaling pathway, the administration of LGX818 may result in a decrease in proliferation of tumor cells. The Raf mutation BRAF V600E is frequently upregulated in a variety of human tumors and results in the constitutive activation of the RAF/MEK/ERK signaling pathway that regulates cellular proliferation and survival. Check for active clinical trials or closed clinical trials using this agent. (NCI Thesaurus)

    #57225
    Catherine Poole
    Keymaster

    Keith Flaherty at Mass General is running this trial and it is the Novartis version of the Braf/MEK dual therapy. It certainly is a viable option for those looking at interesting trials. It has a few internaitonal locations as well: http://www.cancer.gov/clinicaltrials/search/view?cdrid=728588&version=HealthProfessional&protocolsearchid=10229932

    #57226
    LoveJunky
    Participant

    Catherine Poole wrote:

    Keith Flaherty at Mass General is running this trial and it is the Novartis version of the Braf/MEK dual therapy. It certainly is a viable option for those looking at interesting trials. It has a few internaitonal locations as well: http://www.cancer.gov/clinicaltrials/search/view?cdrid=728588&version=HealthProfessional&protocolsearchid=10229932

    I’ve been in that trial for 3 days now.

    So far the side effects I’ve experienced are weird blurry vision that last for a few hours starting about an hour and a half after taking the LGX818 / MEK162, and the skin on my face is sensitive kind of like feeling wind burnt in the winter. In the 3 days I have already noticed a reduction in the size of my tumors.

    #57227
    Catherine Poole
    Keymaster

    I’m sorry to hear about the side effects but very happy to hear about tumor reduction. How long have you been taking it? Where are you doing the trial?

    #57228
    LoveJunky
    Participant

    I’ve been on Novartis LGX818 and MEK162 since Monday. Keith Flaherty is my specialist and as such I’m doing the trial through MGH. The slot in the trial opened up last Tuesday and I spent the rest of last week doing the screening tests so I feel like I’ve been going non-stop for a while.

    #57229
    Catherine Poole
    Keymaster

    Great! You are in good hands with Dr. Flaherty. He has provided MIF with a lot of support over the years and is a brilliant doctor.

    #57230
    pati
    Participant

    Catherine, could you do an update on international locations for the Novartis RAF + MEK combination and also whether it is open to heavily pre-treated patients like yours truly? I contacted Dummer in Zurich but he said he does not have the combo only the LGX mono, I will contact my person in Novartis but I am not sure she would know,

    Pati

    #57231
    LoveJunky
    Participant

    I was told that LGX818 is the “top of the food chain” for BRAF drugs…

    #57232
    Catherine Poole
    Keymaster

    I have reached out to Novartis to learn more. I will let you know what I find out. All of these therapies are early in trial so it is hard to make definitive judgement, but we are hopeful.

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