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AmyM
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AmyM

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      • July 15, 2020 at 8:16 am
      AmyM
      Participant
        Thank you so much for the replies! It’s really helpful to get advice from others having went through similar situations and know what direction to push things. I’m hoping and praying there’s further shrinkage so we can get SRS. Dad is for MRI this week!.
        Thank you,
        Amy
        • July 15, 2020 at 8:04 am
        AmyM
        Participant
          Hi Misty,

          My dad is on this combo & finds his main side effect is fatigue. Especially after the larger dose. We have ended up swapping the larger dose of tablets to around 8pm in the evening so that when fatigue hits it’s over bed time & the smaller dose in the morning. (The oncologist suggested this)
          He’s tolerated this well so far & been on enco/binni since April. Hope all goes well for you starting targeted therapy!
          Amy

          • April 16, 2020 at 6:57 am
          AmyM
          Participant
            Thanks so much for the useful information & links Celeste. Your blog is amazing.
            I have reached out to a few melanoma specialists so I’m waiting for a telephone appt next week. Dad still hasn’t received anymore targeted therapy drugs from the NHS although I’m chasing it. It’s difficult due to covid but shouldn’t mean that cancer patients should go without medication.
            Thanks for all your help!
            Amy
            • April 14, 2020 at 8:06 am
            AmyM
            Participant
              Thanks so much for all your help. Really helps hearing others stories! Do you know how much steroids it’s ok to be on with immunotherapy? The nhs doctor seemed to think it would have to be very low / off steroids otherwise it’s no use.
              Amy
              • April 14, 2020 at 7:57 am
              AmyM
              Participant
                Thanks so much for all your help! Amazing hearing your story! We are based in Northern Ireland and with this covid situation it seems unlikely we will get to travel far soon. Have you heard of any melanoma specialists in the UK? I have reached out to a London doctor who does lots of research! I also seen a hospital in Dublin offers SRS but you need to be referred.
                Amy
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