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Redlo8

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      Redlo8
      Participant

        Hi Lauren,

        My wife also had very high levels of creatinine. She has been on Keytruda for about 18 months but the Creatinine hasn't been a problem for the last 12 months or so. From memory it made her very tired and out of sorts, the doctors were worried as high levels can result in Kidney damage I believe. Apparently certain medications that contain steroids can bring the problem under control but steroids work against the keytruda (or do the opposite to the immune system) so her oncologist was only prepared to use them as a last resort. His remedy was to put her on fluid tablets and a direction to drink at least 3 litres of water a day. This apparently flushes the kidneys out and with it the "extra" creatinine goes away as well. It wasnt as easy as its sounds, because to organise your day around drinking that much water and then going to the toilet many many times is probably harder than we think (easier for a man than a lady many would say :)) but it got the issue under control within a month or two and she stayed on that for some time until everyone was happy to give it away. She still drinks water but only about 1.5L a day and no fluid tablets, and the blood test (she has them every 3 weeks) have shown the creatinine level to be stable now for ages.

        She remains on Keytruda indefinately as it continues to reduce all of her Melanoma's. There was never much talk of stopping or changing the treatment. But the Docs do worry a lot about Kidney damage and wont let that happen if it can be avoided.

        I am no doctor so I hope the info here is relevent and correct and can help his situation.

        Good luck Lauren.

        Scott

        Redlo8
        Participant

          Hi Lauren,

          My wife also had very high levels of creatinine. She has been on Keytruda for about 18 months but the Creatinine hasn't been a problem for the last 12 months or so. From memory it made her very tired and out of sorts, the doctors were worried as high levels can result in Kidney damage I believe. Apparently certain medications that contain steroids can bring the problem under control but steroids work against the keytruda (or do the opposite to the immune system) so her oncologist was only prepared to use them as a last resort. His remedy was to put her on fluid tablets and a direction to drink at least 3 litres of water a day. This apparently flushes the kidneys out and with it the "extra" creatinine goes away as well. It wasnt as easy as its sounds, because to organise your day around drinking that much water and then going to the toilet many many times is probably harder than we think (easier for a man than a lady many would say :)) but it got the issue under control within a month or two and she stayed on that for some time until everyone was happy to give it away. She still drinks water but only about 1.5L a day and no fluid tablets, and the blood test (she has them every 3 weeks) have shown the creatinine level to be stable now for ages.

          She remains on Keytruda indefinately as it continues to reduce all of her Melanoma's. There was never much talk of stopping or changing the treatment. But the Docs do worry a lot about Kidney damage and wont let that happen if it can be avoided.

          I am no doctor so I hope the info here is relevent and correct and can help his situation.

          Good luck Lauren.

          Scott

          Redlo8
          Participant

            Hi Lauren,

            My wife also had very high levels of creatinine. She has been on Keytruda for about 18 months but the Creatinine hasn't been a problem for the last 12 months or so. From memory it made her very tired and out of sorts, the doctors were worried as high levels can result in Kidney damage I believe. Apparently certain medications that contain steroids can bring the problem under control but steroids work against the keytruda (or do the opposite to the immune system) so her oncologist was only prepared to use them as a last resort. His remedy was to put her on fluid tablets and a direction to drink at least 3 litres of water a day. This apparently flushes the kidneys out and with it the "extra" creatinine goes away as well. It wasnt as easy as its sounds, because to organise your day around drinking that much water and then going to the toilet many many times is probably harder than we think (easier for a man than a lady many would say :)) but it got the issue under control within a month or two and she stayed on that for some time until everyone was happy to give it away. She still drinks water but only about 1.5L a day and no fluid tablets, and the blood test (she has them every 3 weeks) have shown the creatinine level to be stable now for ages.

            She remains on Keytruda indefinately as it continues to reduce all of her Melanoma's. There was never much talk of stopping or changing the treatment. But the Docs do worry a lot about Kidney damage and wont let that happen if it can be avoided.

            I am no doctor so I hope the info here is relevent and correct and can help his situation.

            Good luck Lauren.

            Scott

            Redlo8
            Participant

              Thank You to everyone that has replied, it is very much appreciated.

              I didnt go into the whole gammet of treatments and test the doctors have done on Di's lip but suffice to say everything you guy's have suggested has been tested for and all have come back negative.

              Just this weekend she was given another "cream" to try from the Cancer Clinic and it made the situation worse again.

              The coconut product is about the only thing we havent tried from all the suggestions. We will do so ASAP.

              Once again thank you all for the time you took to reply. If anything changes I will let you know and please if anyone has a similar issue and finds a product that might help let us know.

              Kind Regards

              Scott

              Redlo8
              Participant

                Thank You to everyone that has replied, it is very much appreciated.

                I didnt go into the whole gammet of treatments and test the doctors have done on Di's lip but suffice to say everything you guy's have suggested has been tested for and all have come back negative.

                Just this weekend she was given another "cream" to try from the Cancer Clinic and it made the situation worse again.

                The coconut product is about the only thing we havent tried from all the suggestions. We will do so ASAP.

                Once again thank you all for the time you took to reply. If anything changes I will let you know and please if anyone has a similar issue and finds a product that might help let us know.

                Kind Regards

                Scott

                Redlo8
                Participant

                  Thank You to everyone that has replied, it is very much appreciated.

                  I didnt go into the whole gammet of treatments and test the doctors have done on Di's lip but suffice to say everything you guy's have suggested has been tested for and all have come back negative.

                  Just this weekend she was given another "cream" to try from the Cancer Clinic and it made the situation worse again.

                  The coconut product is about the only thing we havent tried from all the suggestions. We will do so ASAP.

                  Once again thank you all for the time you took to reply. If anything changes I will let you know and please if anyone has a similar issue and finds a product that might help let us know.

                  Kind Regards

                  Scott

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