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At what point do I freak out about the combo not being effective?
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At what point do I freak out about the combo not being effective?

› Forums › General Melanoma Community › At what point do I freak out about the combo not being effective?

  • Post
    • October 10, 2019 at 9:08 pm
    JudiAU
    Participant
      I have had two rounds of the combo and the third is next week. I have a brain MRI the next week with follow up with my original neurosurgeon. I usually have 6 months and this is 3 mo. He has talked to my oncologist quite a lot. They originally started with a surgery plan but when they found the lung Mets they switched to drugs first.

      I’ve been tired but that is really it. None of the horrible side effects that are talked about. I expected to look like an albino giraffe with no bowel by this point. I read several times that a stronger reaction to the combo was positive. And now I am freaking out that I am tolerating it so well. Is it just to soon to judge?

      Still no symptoms from the Mets. I have had increased unpleasant sensation from the severe nerve damage but no other neurological symptoms. I had radiation to the original tumor radiatiated about 8 months ago and 3 months ago they said it was stable.

      I have very very minor issues but I don’t think any are related. Like I have a tiny bit of what looks like seasonal excema that I get ever winter because I forget to moisturize. Or I have three circular dots that look like mild ringworm that I’ve picked from husbands towel before. Mild cold symptoms with my 10 up has been home and sick.

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        • October 11, 2019 at 1:03 am
        Lucas
        Participant
          I received all 4 combo treatments and had only fatigue. I had almost a complete response to several cancerous nodes in different areas. I could feel them shrinking. A couple months after finishing I started developing vitiligo. My hair is almost completely white 6 months later.
            • October 11, 2019 at 1:19 am
            JudiAU
            Participant
              Very helpful. Thank you for responding. Vitiligo is my preferred “free diseSe”. I’m want to look like Marilyn.
            • October 11, 2019 at 1:03 am
            Lucas
            Participant
              I received all 4 combo treatments and had only fatigue. I had almost a complete response to several cancerous nodes in different areas. I could feel them shrinking. A couple months after finishing I started developing vitiligo. My hair is almost completely white 6 months later.
              • October 11, 2019 at 2:22 am
              doragsda
              Participant
                My wife had brain mets, did all 4 combos followed by two years of nivo alone, which she just finished two weeks ago. She is now disease free. During the combo she has some dry mouth and some mild muscle aches. The nivo wiped out her thyroid about a year in, but otherwise no real side effects. The immunotherapy was clearly effective on her, and she had minimal side effects. We asked the melanoma specialist the same thing you’re asking – should we be concerned that the side effects aren’t more pronounced. His response was “no.”
                • October 11, 2019 at 1:35 pm
                JudiAU
                Participant
                  Well wouldn’t you know it. I feel absolutely lousy today.
                  • October 12, 2019 at 5:31 am
                  AshleyS
                  Participant
                    Hi Judi,

                    I had minor fatigue/diarrhea after my first 2 rounds. Following the third round I had grade 3 diarrhea and was taken off the dugs. Also, my Alopecia/Vitiligo, I had both, didn’t begin until about 6 months after I suspended the combination treatment. (I was actually in the trial, so my dosing may have been different.) I did follow up with 2 years of Nivo and am a complete responder.

                    Best wishes,

                    Ashley

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