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Stomach pains on Trial
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Stomach pains on Trial

› Forums › General Melanoma Community › Stomach pains on Trial

  • Post
    • September 9, 2015 at 2:05 pm
    pookerpb
    Participant

      Asking for prayers as my DH goes through another set of test to try to figure what is going on with this stomach/bowels.

      Has been on Keytruda/Interferon trial since January 2015, since progession on Ipi in 2014. His melanoma returned in 2013 to his small intestine and a resection was done due to complete blockage by the time they found it. Had to leave numerous lymph nodes due to location. Thats when he started the IPI trial and progressed with multiple mets after 6 months.

      Fast forward to July, had pnuemonitis from Keytruda and had to be on high dose steroids for 6 weeks. On second round of Keytruda since completion of steroids. Now has low iron, hemocratic numbers way down and severe fatigue. Nagging persistent stomach ache that doesnt come and go with or without food….just always there. Bleeding from somewhere so they are testing stool and ordering scope.

      Anyone else have stomach pains on keytruda? We are hoping it is either stomach or bowel inflammation form the infusions and not the small intestine lymph nodes enlarging. Prayers needed. I hate to see him this way. It was so hard the first time when hi kept having to have blood transfusions because they didnt diagnosis as stage iv until he was so, so weak.

      This has been so hard on him, me, our children and I feel so defenseless and unable to help him. I am OCD control freek when it comes to making sure everying is taken care of, in place and no one has to worry. My anxiety level (like his) is through the roof with this disease. I hate how it controls our lives…..

       

    Viewing 11 reply threads
    • Replies
        • September 9, 2015 at 3:54 pm
        arthurjedi007
        Participant

          Keytruda didn't cause my stomach pains but other meds, radiation and scan contrast and scans do.

          If it isn't diahrea too just stomach pain my moms remedy helped me a lot. It sounds silly but it doesn't hurt to try and gave me relief.

          Basically just warm up a cup of water and stir in jello powder. Drink it slowly while it's hot. Something about how it expands in the stomach soothes me.

          Now you can't do that if you are on the braf pills because it interferes with their absorption. But with keytruda and stuff it is fine.

          Artie

          • September 9, 2015 at 3:54 pm
          arthurjedi007
          Participant

            Keytruda didn't cause my stomach pains but other meds, radiation and scan contrast and scans do.

            If it isn't diahrea too just stomach pain my moms remedy helped me a lot. It sounds silly but it doesn't hurt to try and gave me relief.

            Basically just warm up a cup of water and stir in jello powder. Drink it slowly while it's hot. Something about how it expands in the stomach soothes me.

            Now you can't do that if you are on the braf pills because it interferes with their absorption. But with keytruda and stuff it is fine.

            Artie

              • September 9, 2015 at 5:31 pm
              pookerpb
              Participant

                Thanks Artie….worth a try at least. Thanks so much for the information. I dont believe it is the Keytruda either. Could be due to all the NSAIDS and such.

                • September 9, 2015 at 5:31 pm
                pookerpb
                Participant

                  Thanks Artie….worth a try at least. Thanks so much for the information. I dont believe it is the Keytruda either. Could be due to all the NSAIDS and such.

                  • September 9, 2015 at 5:31 pm
                  pookerpb
                  Participant

                    Thanks Artie….worth a try at least. Thanks so much for the information. I dont believe it is the Keytruda either. Could be due to all the NSAIDS and such.

                  • September 9, 2015 at 3:54 pm
                  arthurjedi007
                  Participant

                    Keytruda didn't cause my stomach pains but other meds, radiation and scan contrast and scans do.

                    If it isn't diahrea too just stomach pain my moms remedy helped me a lot. It sounds silly but it doesn't hurt to try and gave me relief.

                    Basically just warm up a cup of water and stir in jello powder. Drink it slowly while it's hot. Something about how it expands in the stomach soothes me.

                    Now you can't do that if you are on the braf pills because it interferes with their absorption. But with keytruda and stuff it is fine.

                    Artie

                    • September 9, 2015 at 5:03 pm
                    Scooby123
                    Participant

                      Hi there, sorry to hear how much discomfort he is in. I have not had keytruda so cannot comment but just wanted you to know we are all here for you .hope he gets to the bottom of what it is.

                      prayers to all of you 

                      scooby

                      • September 9, 2015 at 5:03 pm
                      Scooby123
                      Participant

                        Hi there, sorry to hear how much discomfort he is in. I have not had keytruda so cannot comment but just wanted you to know we are all here for you .hope he gets to the bottom of what it is.

                        prayers to all of you 

                        scooby

                        • September 9, 2015 at 5:03 pm
                        Scooby123
                        Participant

                          Hi there, sorry to hear how much discomfort he is in. I have not had keytruda so cannot comment but just wanted you to know we are all here for you .hope he gets to the bottom of what it is.

                          prayers to all of you 

                          scooby

                          • September 9, 2015 at 7:04 pm
                          Kim K
                          Participant

                            FYI –

                            If the scoping comes out negative, insist on a camera study, the kind you swallow.  Scopes cannot reach the far ends of the small intestines and often time issues / tumors are missed that are subseqently picked up with the camera.

                            Sounds highly suspicious of another GI met or at the very least, some nasty ulcers.

                            I hope whatever it is remains localized and is able to be treated / removed.

                            Fingers crossed –

                            KK

                            • September 9, 2015 at 7:04 pm
                            Kim K
                            Participant

                              FYI –

                              If the scoping comes out negative, insist on a camera study, the kind you swallow.  Scopes cannot reach the far ends of the small intestines and often time issues / tumors are missed that are subseqently picked up with the camera.

                              Sounds highly suspicious of another GI met or at the very least, some nasty ulcers.

                              I hope whatever it is remains localized and is able to be treated / removed.

                              Fingers crossed –

                              KK

                                • September 9, 2015 at 7:10 pm
                                pookerpb
                                Participant

                                  Yes….will do regarding the camera. 2 years ago after scope, after scope, camera capsule is the only way they found the tumor in small intestine. Stinks that due to insurance protocol, and all other measures being exhaustedf first before insurance would authorize, it was almost a year before we could get insurance approval for the camera capsule. The waiting could have cost him his life at that point.

                                  • September 9, 2015 at 7:10 pm
                                  pookerpb
                                  Participant

                                    Yes….will do regarding the camera. 2 years ago after scope, after scope, camera capsule is the only way they found the tumor in small intestine. Stinks that due to insurance protocol, and all other measures being exhaustedf first before insurance would authorize, it was almost a year before we could get insurance approval for the camera capsule. The waiting could have cost him his life at that point.

                                    • September 9, 2015 at 7:10 pm
                                    pookerpb
                                    Participant

                                      Yes….will do regarding the camera. 2 years ago after scope, after scope, camera capsule is the only way they found the tumor in small intestine. Stinks that due to insurance protocol, and all other measures being exhaustedf first before insurance would authorize, it was almost a year before we could get insurance approval for the camera capsule. The waiting could have cost him his life at that point.

                                    • September 9, 2015 at 7:04 pm
                                    Kim K
                                    Participant

                                      FYI –

                                      If the scoping comes out negative, insist on a camera study, the kind you swallow.  Scopes cannot reach the far ends of the small intestines and often time issues / tumors are missed that are subseqently picked up with the camera.

                                      Sounds highly suspicious of another GI met or at the very least, some nasty ulcers.

                                      I hope whatever it is remains localized and is able to be treated / removed.

                                      Fingers crossed –

                                      KK

                                      • September 9, 2015 at 10:54 pm
                                      beans920
                                      Participant

                                        May I ask where you are that you are receiving both keytruda and interferon.  Best wishes to you.

                                        • September 9, 2015 at 10:54 pm
                                        beans920
                                        Participant

                                          May I ask where you are that you are receiving both keytruda and interferon.  Best wishes to you.

                                            • September 10, 2015 at 12:13 pm
                                            pookerpb
                                            Participant

                                              Husband is receiving treatment with Dr. Kirkwood at Hillman Cancer Center in Pittsburgh, PA. Long drive for us but not as far as many others travel….

                                              • September 10, 2015 at 12:13 pm
                                              pookerpb
                                              Participant

                                                Husband is receiving treatment with Dr. Kirkwood at Hillman Cancer Center in Pittsburgh, PA. Long drive for us but not as far as many others travel….

                                                • September 10, 2015 at 12:13 pm
                                                pookerpb
                                                Participant

                                                  Husband is receiving treatment with Dr. Kirkwood at Hillman Cancer Center in Pittsburgh, PA. Long drive for us but not as far as many others travel….

                                                  • September 10, 2015 at 12:19 pm
                                                  pookerpb
                                                  Participant

                                                    Keytruda infusions every 3 weeks and Pegylated Interferon shot once a week. Initially on the highest of the 3 doses of Peg, but after 2 mos, had to drop down to next lowest dose of Peg. He hates the interferon but seems to handle the lower dose ok for now.

                                                    • September 10, 2015 at 12:19 pm
                                                    pookerpb
                                                    Participant

                                                      Keytruda infusions every 3 weeks and Pegylated Interferon shot once a week. Initially on the highest of the 3 doses of Peg, but after 2 mos, had to drop down to next lowest dose of Peg. He hates the interferon but seems to handle the lower dose ok for now.

                                                      • September 10, 2015 at 12:19 pm
                                                      pookerpb
                                                      Participant

                                                        Keytruda infusions every 3 weeks and Pegylated Interferon shot once a week. Initially on the highest of the 3 doses of Peg, but after 2 mos, had to drop down to next lowest dose of Peg. He hates the interferon but seems to handle the lower dose ok for now.

                                                      • September 9, 2015 at 10:54 pm
                                                      beans920
                                                      Participant

                                                        May I ask where you are that you are receiving both keytruda and interferon.  Best wishes to you.

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