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Stefan Makhoul

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      Stefan Makhoul
      Participant
        Hi, I’m going through a similar thing. My mum has just recently been diagnosed with stage IV melanoma, with mets to her bone, lung and potentially other parts of her bod. I think I’m still going through a process of grief, and mourning our old cancer-free life, there seems something cosmically unfair about me at 17 having to worry about the death of my mum. However everybody’s life is coloured by personal struggle, this is simply ours. My mum hasn’t started treatment yet, we’re still thinking about this as the start of a marathon, and I don’t know what the prognosis for your mum is or if lots of the options are exhausted. But I try to find solace in the day-to-day and her company. She’s here now, don’t worry about tomorrow or in an hour. Anxiety is holding you back from enjoying whatever time you have left with her, and the last thing a parent would want is for their illness to burden their child. I say this partly as a message to myself as well as you but we’re in a tough position, and one that we just have to power through. We’ll all be fine by the end of this, but I personally (and I’m sure you do too) aim to honour my mother during this time and for the rest of my life if she can’t be there with me. The best way we can honour our parent’s memory is by being successful and thriving, of course cry, vent out your frustration and let out your emotions, but you’re not broken and you will be fine.
        Stefan Makhoul
        Participant
          Thank you so much Celeste, I see you on this forum responding to people on this platform all the time and you’re a real beacon of hope. My mum has just under three treatments with ipi and nuvo, she was having awful back pain which we thought was a consequence of the therapy but turns out it was a new tumour. When she went into the scan they found a fourth tumour there, however they only scanned her spine, so god knows how many there are all over the body. The consultation we had with the doctor after that was brief and abrupt – that it wasn’t working and that we’re going to switch. She didn’t mention switching back to immunotherapy, so that might be something I might bring up next time, and if you have any info on that it would be very appreciated. I’ve read some research that has correlated low tumour burden with high long-term targeted therapy response, and with the number of tumours she has, I’m deeply concerned. Unfortunately, I’m starting to believe the prognosis isn’t good, and that in the long term she might not make it.

          I would appreciate any info you have

          thank you so much

          Stefan Makhoul
          Participant
            Wish you all the best, if you don’t mind me asking, how many tumour sites you have? Also how long have you been on the combo for now? It’s so nerve racking, everybody is touting immunotherapy and I’m beyond disappointed it didn’t work for her. Once again wish you all the best.
            Stefan Makhoul
            Participant
              Thank you so much for your response, it’s much appreciated! That post with all the treatment options is massively helpful, however this is slightly complicated by her hyperactive thyroid, she’s currently on medication which deals with that quite effectively, but do you think this could prevent her from having some immunotherapies?

              Once again thank you for your response

              Stefan

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