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official at my half way mark for Opdivo treatments. ( #13 )
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official at my half way mark for Opdivo treatments. ( #13 )

› Forums › General Melanoma Community › official at my half way mark for Opdivo treatments. ( #13 )

  • Post
    • September 24, 2018 at 2:56 pm
    Raco
    Participant

      I have not posted any updates in a while, because life happens.
      I am official at my half way mark for Opdivo treatments. ( #13 )  Whoop Whoop. (Treatments every two weeks)  26 total
      So far the treatment side effects have been on and off, upset stomach, nausea, heavy breathing, rash spots, aching bone / muscles and Fatigue.
      The fatigue has been bad at times, but I have been working full time and between my wife and I take care of our two special needs daughters Olivia 20 and Chelsea 24. So this sure does not help with the Fatigue.
      So as I mentioned, I am now ½ way through my 26 treatments, so far, I have  had two Brain MRI and one PET scan.  My second PET is this coming Wed. 9/26.
      Right now, my worst symptoms are Fatigue, Rash Spots all over, and bone/muscle pain.
      But it beats the alternative. GOD is good.

       

       

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    • Replies
        • September 24, 2018 at 6:17 pm
        mandyjill
        Participant

          Raco, about halfway through my Opdivo/Yervoy treatments ( I went every two weeks for a year) I started taking a low dose of prednisone that helped tremendously with the bone/joint/muscle pain.  The doc said since it was such a low dose that it wouldn't interfere with the immunotherapy.

            • September 24, 2018 at 8:11 pm
            Raco
            Participant

              thank you   interesting

              • September 25, 2018 at 10:13 am
              dessie
              Participant

                Halfway there!!… I just finished #14 and like you have had minimal side effects… the muscle pains are the worse for me..BUT geez I look around at the other patients in the infusion room and I am doing wonderfully in comparison .  

                Raco, have your monocytes been elevated on a constant basis?  I have been reading about this and from what I can gather , this means that you are responding to therapy.  Just not crystal clear however.

                Glad to hear things are going so well as it sure beats the alternative!!

                 

                • September 25, 2018 at 7:32 pm
                Raco
                Participant

                  Hi Dessie, nice to hear from  you. Hope all is well with you also but my muscle / bone pain is not fun at all. its constant, just some days are milder than others but I know its with me.  Any way, I look at my blood every two weeks and I saw this. Not sure if you refered to #;s or % so here are both Examples.

                  Monocyte count (MO #)  Normal range 0 || 0.9   My last 5 treatments are 0.47  0.62  0.75  0.65  0.56

                  Monocyte, percent (MO %) Normal range 0 || 12  My  last 5 treatments are 9.00%  10.80%  13.00%  10.50%  11.50%

                  the % looks like its right at normal or peaking some….  so maybe  this can be good News?

                  so are you also having a total of  26 treatments and now your on the down slide.

                  I like counting down to the finish line. 

                  So, I am off for my Second PET Scan in the morning. First was done in March just before starting Opdivo.

                  Take care Dessi

                  Robbie (raco)

                   

                • September 25, 2018 at 5:44 pm
                MelanomaMike
                Participant
                  YeeeHa! Over the Hump! Good for you man! Im Mike by the way, i to take Opdivo but, were taking a little break til i see a specialist, i was to do #6 infuse last Friday (plus i did the 4 delicious bags of Yervoy) but my Ct scan report the other day was not to my Onco’s liking. No sweat!
                  Back to “you”, man!, you have alot on your plate at home! And huge hugs to your daughters! My wife worked in the field for a long time & now works as a CareGiver for the Ederly, bless their hearts…Keep up your mental strength brother, were rootin’ for you! 🙂
                    • September 25, 2018 at 7:08 pm
                    Raco
                    Participant

                      thanks Mike, I appreciate your feedback, I have read many of your post and responses Always informative.

                      Take care man

                    • September 25, 2018 at 7:20 pm
                    bjeans
                    Participant

                      Good going, Raco! My husband would be at 13 too but had to delay two (side effects) so hit 11 in the trial. 

                      Beth

                        • September 25, 2018 at 7:37 pm
                        Raco
                        Participant

                          I hope your Husband gets over the bad side effects,  what kind of Effects was he having IF I May Ask?

                          Take Care

                          Robbie (RACO)

                          • September 25, 2018 at 9:40 pm
                          bjeans
                          Participant

                            Robbie, he’s been over the side effects {knock on head/closest thing to wood} for maybe a month. He had diarrhea that couldn’t be controlled with Imodium or Lomotil, so was on prednisone, and then tapered off. He was allowed to continue infusions when on a low dose, just had to miss (delay) two while symptomatic and on a higher dose. It was considered a mild colitis. 

                            Mild symptoms returned after his CT scan last week, but probably/hopefully were all barium related. A little medicine and he’s fine again. 

                            No other side effects other than maybe a little fatigue on infusion day, though he usually goes to work afterwards. 

                            I hope you’re feeling good!

                            Beth

                            • September 26, 2018 at 10:05 pm
                            Raco
                            Participant

                              You all will be in my prayers

                              • September 27, 2018 at 1:18 am
                              bjeans
                              Participant

                                Thank you so much – you too in ours.

                              • September 30, 2018 at 4:35 am
                              Foothillfoundling
                              Participant

                                Woo Hoo!  Congrats!  We are 1 away from the 1/2 way point (could not do #6 this week.) Your side effects are precisely what I am seeing in my Fiancé so hoping the Pred will help.  

                                  • October 5, 2018 at 8:26 pm
                                  Raco
                                  Participant

                                    thank you and congats to yall also.   Have a good weekend.

                                  • October 11, 2018 at 11:12 am
                                  Bubbles
                                  Participant

                                    Hi Robbie,

                                    Missed this when you posted.  Hope your scan went well.  Just wanted to say that I am very hopeful that you will have good results from your treatment and never be bothered with melanoma again!!  Hey, if it can work for us Stage IV patients, it can certainly work for you!  Hang tough with the side effects.  You are half way there.  You got this.  Also wanted to let you know I checked out your link to "Two Charge Kids".  I had missed that part of your life previously.  You daughters are blessed to have you and their mom.  I know this has not been an easy path for any of you.  You have my extreme admiration.  The love you all share was abundantly clear in your pics.  I wish you my best.  Celeste

                                      • December 5, 2018 at 4:56 pm
                                      Raco
                                      Participant

                                        Celeste,  thank you so much fo r the kind words, I really appreciate all your post and helpfull comments, 

                                        you really have this stuff down…. It shows you have done your research on Melanoma.

                                         

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