Advise needed

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Hi I am coming to the end of 2 years on Nivolumab.I had targeted drugs before for 7 months but the tumours started to grow and I was switched to ipi and Nivolumab and then Nivolumab only.I have a CT scan tomorrow and then in 8 weeks time the consultant will discuss the next stage of action. At the moment my tumours are shrinking but are still there. I was originally told they couldn’t operate as there were too many blood vessels involved and it was 11 cm at the time. I also had melanoma near my spine and in my lungs. Everything in the 2 years is shrinking and scans every 3 months have said stable or shrinking.I am well on Nivolumab with only itchiness and joint pain at times. I wondered if there was anything new to try or am I able to continue with this treatment that up to now seems to be working.I know it’s expensive and wondered if there was a limited amount a person could have . Any advise would be gratefully excepted as I want to be prepared for the meeting with the consultant 

  • FormerMember
    FormerMember

    Hi , unlike Lung cancer which has a 2 year limit on immunotherapy we melanoma patients don’t have a time restriction, so I expect that things will carry on as now. There is an option to have breaks in treatments and go back on to them when a scan shows you need it but it doesn’t sound like your a complete responder yet so I’m not sure that they will encourage a break. I was told that when I need a change of treatment I can go back on Dabrafenib and combine it with Tramatenib (Dab alone worked for 9 months for me but dab tram usually works for longer, encorafenib with binimetinib wasn’t mentioned but might be an option for me as well. 

    https://www.cancerresearchuk.org/about-cancer/melanoma/treatment/advanced-treatment/biological-therapy/drugs

    i hope this helps and that your scan and results go well. 

  • Thank you for the information I had been on DabTram for 7 months and had to change to immunotherapy.I hope I can just continue with the treatment and maybe if the main tumour shrinks more they may operate. I think they said in April I will have a pet scan and they will see what part if any of the tumour is dead. Thanks again and good luck with your journey through this 

    Lgrgdg90
  • FormerMember
    FormerMember in reply to lgrgdg90

    The melanoma patient conference has just opened for registration for the event in June 2020, they are sure to have talks on the latest things that are available. 

    http://www.melanomapatientconference.co.uk/

  • Thank you I will look out for the information after the conference. I would feel too upset and emotional to attend at present   Slight smile

    Lgrgdg90