what to do

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  • Post
    • July 20, 2017 at 3:28 pm
    smiller
    Participant

       My husband had to stop the opdivo/yervoy treatment after three. He was on a break for a month (after a few days in the hospital) to help rid the side effects.  Next week he will have a  scan and talk to his doctor about the maintenance.  From what I am reading it will be opdivo every two weeks.  I am not sure if he will be willing to try this since his side effects were so bad with the combo.   Can anyone shed light on the fact that it wil be just the one med and perhaps not nearly as bad?  I understand everyone is different–I am just not ready for him to "give up".  I feel he needs to at least try it and see how his body responds.  Any words of encouragement?  Thank you in advance!

      Jim's wife

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    • Replies
        • July 20, 2017 at 4:13 pm
        jennunicorn
        Participant

          Yes it will be Opdivo alone and the side effects will be much less. Yervoy is the bad boy when it comes to side effects, Opdivo is the friendly one. I've been on Opdivo maintanence since February with minor side effects. He did great getting through 3 combos, not everyone can get that much. Opdivo alone will feel like a walk in the park.. besides having to go in for infusions more often.

            • July 20, 2017 at 4:44 pm
            smiller
            Participant

               Thank You!

              Jim's wife

            • July 20, 2017 at 5:35 pm
            sister of patient
            Participant

              Hi Jim's wife – my sister was only able to have 2 infusions of the combo before side effects nixed it. She's done really well on the nivo maintenance – tolerated it easily and it's been very effective. Hope it's the same for Jim!! Best wishes for a great outcome for him!

              Barb

                • July 20, 2017 at 6:03 pm
                smiller
                Participant

                  Another question—when  he was on the combo treatment he had to have labs and see the doctor every time.  Is it the same for the nivo alone?  It was an all day appointment and I think he has concerns of missing a day  (or even a half day) every two weeks!  He doesn't have any vacation days left for the year and we don't get sick pay!  Besides the money issue  ($75.00 office visit) – it's also the feeling like he is not pulling his weight around the office.

                  Thank you!

                  • July 20, 2017 at 6:18 pm
                  jennunicorn
                  Participant

                    Yes it is the same.. and is a pain in the butt, but he needs his blood checked every time to make sure no underlying side effects are coming up and the oncologist needs to make sure he's healthy for the infusion. I would check with the hospital about financial assistance options just to see if he would qualify to help ease the burden of the appointment costs. Cancer is definitely an inconvenience in our lives and our jobs have to deal with us being gone more often than a healthy employee… and we have to deal with feeling like we're not working as hard as we should. It's an adjustment.. I am a year and a half in and still adjusting. 

                    • July 20, 2017 at 6:22 pm
                    sister of patient
                    Participant

                      Yes, there's blood work prior to every nivo infusion. But the single infusion doesn't take nearly as long as the combo. Sorry to hear you have associated costs – that's a shame!! As for his employer, they need to understand that treatment is essential for Jim – perhaps they do though and it's just Jim's own feeling that he's not doing his share. Regardless, his health is more important than any job!!!!! Best of luck to you!

                      Barb

                      • July 20, 2017 at 7:58 pm
                      ToddG
                      Participant

                        I do not see the oncologist everytime.  I go straight to the lab with no out of pocket expese. I suppose it depends on what insurance you have and what center or clinic you go for treatment.  Prayers for you and Jim!  I've had two nivo maint infusions and won't see doc until the 4th one.  Side effect to watch out for is colitis…

                         

                        Todd

                        • July 20, 2017 at 8:50 pm
                        smiller
                        Participant

                          Thanks to you all.  We will find out Wednesday what his doctor recommends!

                        • July 20, 2017 at 10:28 pm
                        Sharon93065
                        Participant

                          What were the side effects?  Why was he in the hospital?  I get my 3rd next week. Had labs today, Dr appt Monday.  How soon after the 3rd treatment? 

                          Sharon

                            • July 21, 2017 at 1:36 pm
                            smiller
                            Participant

                              He was running a fever-had rash and wasn't able to keep anything down.  He had lost 40 lbs.  Was admitted to hospital for fluids for dehydration.  He was admitted to hospital four days before what was scheduled to be his fourth treatment. 

                              Sharon–I hope all goes well with your remaining treatments and remember everyone is different! 

                              Jim's wife

                              • July 21, 2017 at 3:23 pm
                              Sharon93065
                              Participant

                                Thank you for taking the time to answer.  My test results came back last night and my AST/ALT spiked and i had a panic attack.  Should not read them at bed time.

                                Then in this forum i read they are above normal but not that high. 

                              • July 21, 2017 at 3:19 pm
                              Bradley75
                              Participant

                                I failed the combo due to side effects after one dose.  They gave me the choice of Opdivo or Keytruda.  I am pretty sure they are basically the same drug.  The difference I liked is Keytruda is every three weeks and Opdivo was every two.  With work, kids, etc. every three has really helped me.  Either drug has proven success so no need to hang your head.  Many people fail the combo and have great success with just the single drug… myself included.

                                Brad

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