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Pausing 1st cycle of treatment – Keytruda. Thoughts on next steps?
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Pausing 1st cycle of treatment – Keytruda. Thoughts on next steps?

› Forums › General Melanoma Community › Pausing 1st cycle of treatment – Keytruda. Thoughts on next steps?

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    • May 3, 2017 at 3:33 pm
    MikeW
    Participant

      Looking on here to see if the group has some insight on possible next steps after pausing treatment.

      Diagnosed on Jan 17 with Stage 4 with four lung nodules the biggest of which is about the size of a marble. 

      I've gone through 3 treatments of Keytruda with the usual rash/itchiness and some nausa/fatigue. Over the last 2 weeks I've been hit hard with joint inflammation and finally a prescription of low does prednisone got it under control. 

      Yesterday was supposed to be the 4th treatment (I go every 3 weeks) and followed by a scan in another 3 weeks. The blood came back that my liver counts were inching up so the doc said that given the inflamation, he wasn't too surprised and wanted to get in front of the other potential auto-immune issues by 1) pausing treatment, 2) hitting me up with a higher level of steroid for a short period, 3) re-check the blood on Friday and then re-assess. 

      I know I'll know a lot more after the scan in a few weeks but can't help but think through the contingencies. 

      Am I off Keytruda for good now? If so, what are the options if the scan comes back with progression? 

      Thanks for any ideas/experience…

      Mike

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        • May 3, 2017 at 5:51 pm
        jennunicorn
        Participant

          Inching up sounds like it's getting a bit higher and your doc wants to slow that down before it goes too high, which is excellent. This does not mean you're done with Keytruda, I had to skip an infusion myself due to liver ezymes being 3x higher than normal and all sorts of inflammation going on. After a few weeks, was retested and labs were back in normal range so I was able to continue treatment. Sometimes our bodies just need a little breather. 

          I would recommend resting your body, drink lots of water, eat some super foods. No alcohol, not a lot of sugar. Drink dandelion root tea if you can find it (it specifically helps the liver). That's what I did while I was waiting for my body to "chill out". Don't know if it was the only reason my labs got back to normal, but didn't hurt to try. Haven't dealt with high liver counts since that one time.

            • May 3, 2017 at 7:40 pm
            MikeW
            Participant

              Thanks Jenn…really helpful. I'm all over the water ~ 100 oz a day and cut out the beer in Jan….I'll give the dandilion root tea a try….great ideas. I should breath too…

              Take care, Mike

              • May 3, 2017 at 7:59 pm
              jennunicorn
              Participant

                Never forget to breathe 🙂

                • May 5, 2017 at 1:01 am
                Mark_DC
                Participant

                  Hi Mike,

                  i agree with Jenn's answers – although not sure about the dandelion tea!

                  have been in a similar situation as you. Last year i completed four rounds of keytruda, my ALT was going up 10 points every week or so, then it suddenly shot up so was taken off treatment. ALT did not come down by itself so then put on steroids. ALT came down over six weeks, but could not go back on treatment until off steroids for a while. In the end was off treatment for three months and my disease probably slightly worsened.

                  have been back on treatment and have completed three doses. Had to do more frequent blood work since they were worried my liver numbers would go back up. My ALT is a little high (low grade 1) but has been stuck barely rising. My AST seems to have fallen back to normal. I have not done anything differently this second round than i did my first round. I dont drink enogh water (good reminder). Both times i have had to keep off alcohol (barely drinking last year, zero this year), and no tylenol. No idea why my liver OK this time and not the first time.

                  So you may have to be patient but it seems things can change. I was sure my liver had worsened on monday for my last blood work (because am feeling tired and body aches) but it had not so i received my infusion. So i think if you follow Jenns advice you may not need to think of plan b yet, though i guess discuss with doctor so you have something ready.

                  now i just hope this medicine will actually work, for all of us! 🙂

                  Good luck, Mark

                   

                   

                  • May 5, 2017 at 3:16 pm
                  MikeW
                  Participant

                    Thanks Mark! Very much appreciated…good perspective.

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