Home Forums Newly Diagnosed Stage III/IV Stage IIIC: Metastatic Malginant Melanoma, rare in India

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  • #22240
    bipinshah1948
    Participant

    Hello patrons,

    I am 66 yrs old, male, ethnically East Indian, have been diagnosed with Metastatic Malignant Melanoma. I was also test B-RAF positive with mutation in codon 600 exon 15 of BRAF gene and was prescribed Zelboraf (Vemurafenib) by the doctor, dosage advised 960mg twice a day. Secondly, the tumor growth behind the head in the scalp region was surgically removed by a Onco Surgeon.

    I also checked out the Clinical Trials India Registry and an ongoing Trial of Zelboraf (Vemurafenib) by Roche was active but not recruting any patients. Alternatively I checked Clinical Trials in USA and found many ongoing trials under sponsorship of Roche. I also contacted Dr. James Goydos, Director, Melanoma and Soft Tissue Oncology Program Surgical Oncologist and had he had suggested that Zelboraf (Vemurafenib) might not work since the tumor was surgically removed and hence the Inhibitor has no work to do !, I am very confused and lost at this stage with following questions :

    1) Since this is an extreme rare occurence in India, which nearby countries have Melanoma Specialist than mere Oncologist / Dermatologist – Singapore, Indonesia, Thailand, Hong Kong, China, UK, Germany, South Africa? since USA is too far from India

    2) Will the clinical trials recruit indian / international patients as a part of the program for patients who have no insurance ?

    3) If any international patients in the forum here have gone through having an online appointment with webcam setup with any doctor in USA?

    Your replies will be a life saver for me !, God Bless !!

    #65814
    Catherine Poole
    Keymaster

    Many times if you travel to other countries, including the US you will have to pay out of pocket. But if it is a clinical trial, you may be able to get a break. Please look at our listing of centers in global spots: http://melanomainternational.org/web-resources/global-resources/#.VGE9dfnF9SQ

    If you have no evidence of disease you will not be eligible for many trials or therapies, most are for stage IV with tumor evidence. I would check the sites in France, Germany and UK and see what the requirements are for an opinion. Otherwise, UCLA has an international program worth looking into. I hope this helps you.

    #65815
    bipinshah1948
    Participant

    Thanks catherine for your prompt reply, after having researched for the drugs as well as clinical trial, I am posting this piece of information which shall be visible to people like me in similar situations in different (developing) countries :

    1) The cost of drug to import into indian market is exhorbitantly high, for eg: a pack of 56 pills costs $2700 USD per week as per dosing schedule of 960mg X 2 per day that crosses $10,000 USD per month

    2) On enquiring with various cancer centers running clinical trials it was learnt that they only fund the supply of the drugs but not pay for reimbursements for incidental costs like PET Scans / MRIs or other tests related and required for evaluation of clinical trial?

    I am not sure if i got point no2 right since its unclear on financial side, which I think you, catherine might very well be aware of.

    3) I am activley pursuing trials in Canda, UK and germany too, digging in to singapore has found no luck and someone on Melanoma research foundation suggested Israel but i see language barriers and visa issues for that country.

    Any information for Standard of Care Insurance coverage policies for non-immigrants (non-usa residents) and buying that additional cover, a company if recommended by someone in this forum would be apprecaited !!

    #65816
    Catherine Poole
    Keymaster

    I think you should regroup a bit and think about your current disease status. It does sound from your description that you have no evidence of disease, the tumor was removed and there is no further involvement the doctors know of. Therefore, you would not be eligible for these therapies whether in trial or possibly prescription. Has your doctor staged you? I.E> are you stage III or IV? To be seen at individual centers across Europe, UK, or US, you will need to contact them individually as the rules and protocol will be different in each one. If you are eligible for a clinical trial you will be required to make several trips to the location.Please advise of your staging and hopefully we can help you further.

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