Home Forums Melanoma Diagnosis: Stage IV What is the best next step??

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  • #22201
    Bateman
    Participant

    Hello,

    I’m new to this blog but would really appreciate any advice people can give.

    Earlier this year (Feb) my Dad had a cancerous Tumor removed from his lung to find it was melanoma. The Drs then realised that a growth he’d had removed from his head a year before and was perviously thought to be fine, was actually melanoma.

    He then had a clear CT scan 3months later and has recently had another scan which unfortunately has shown 7 small metastices on his brain, the largest of which is 11mm.

    Yesterday he finished two weeks of full brain radiation treatment an is now in he process of weaning himself off his steroids.

    We live in Auckland, New Zealand and the treatment opportunities here seem fairly limited and receive no government funding.

    I would love to know what you think would be his best next step, Dads open to travelling abroad for drug trials/treatments but we are a bit lost as to what to do and where to go.

    Dads ongologist has suggested nilmibulab (not sure how to spell it) which costs around 200 000 NZ$. From what I can see online drug combination treatments seem to have better results in terms of effectiveness but you seem to have to start with nilmibulab before you can be comsidered for alternative treatments.

    Any advice or direction would be great. It would also be great to make contact with others effected my Melanoma living in NZ.

    Thanks,

    Penny

    #65585
    JBunyan
    Participant

    I can only speak for UK. I had stage 4 with 2 brain mets and a few in torso. The brain mets were treated by Gamma knife and have gone with just a small scar – last December. At the same time I was given 4 doses , 3 weeks apart , of Ipilmumab , which was only approved by the UK NICE agency last year. In UK it costs about £80,000 , or £20,000 per session. For suitable candidates it is free for paid up NHS patients. It is still used sparingly for people with multi mets. PD1, so far, has only been available in UK as part of drug company sponsored trials, although I am told about 20 patients have been given it in extreme cases – cost over £160,000 for the full treatment so there is a formula applied in terms of “likely life extension” in months and this applies in UK for all such expensive NHS treatments. Private treatment for cancer is very rare in UK as insurance companies do not routinely cover it as the NHS does put a high priority on it. For me, so far, Ipilmumab has worked in that two successive torso CT scans showed “no detectable signs of disease” and my oncologist, a leading research Prof at a University Hospital has put me on a 6 months rather than 3 months review. Here is a UK Cancer help line on Ipilmumab. I hope your Oncologist can prescribe it free! No guarantee, but it works for some. Good luck.

    http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Biologicaltherapies/Monoclonalantibodies/Ipilimumab.aspx

    #65586
    JBunyan
    Participant

    PS. It is a little surprising if your Dad’s original head mole or whatever was not sent for biopsy , which would have given an earlier diagnosis. NB I am not a Doctor, but he needs to find out if his Metastatic melanoma is BRAF wild or mutant, as if mutant I believe MEK is tried prior to Ipi. In my case my original 3mm deep arm nodule in 2008 was Stage 4 BRAF wild and I had no more symptoms until another operation revealed a melanoma in a remote lymph node 4 years later.

    Please wish him the best of luck and that treatment is improving all the time. Does NZ have a government health scheme like the UK NHS?

    #65587
    Bateman
    Participant

    Thank you so much for your response. My dad is BRAF wild so that’s not an option for him. We don’t have an NHS equalivant but the Australian govt has recently approved funded treatment of some melanoma treatments (i think PD-1) for patients who have exhausted other options and NZ usually follows close behind with these types of things, so fingers crossed for this in the future here.

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