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Coach2u
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Coach2u

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      • July 6, 2018 at 2:51 pm
      Coach2u
      Participant

        You win, much worse than mine. But now where are you with the cancer? Glad you recovered. MIke K.

        • July 3, 2018 at 2:46 pm
        Coach2u
        Participant

          Thanks MIke my original doc would not use remicade so after two separate stays in hospital switched docs. Less that 4 hours diarrhea stopped. Probably  need another dose in a week or two. Lost 25 lbs and did not need to so trying to get some weight back. Still week and on a smaller dose of steroids but hope to get off that soon. Feel ok but tired and somewhat weak. Got to get better so I can continue the fight. This all started 10 days after the second dose of lpi/ MIke K.

          • June 15, 2018 at 3:32 pm
          Coach2u
          Participant

            So happy for you and hopefully me as I just finished my second round of lpi/nivo last week. I was worried about not getting any side effects but last week they showed up with a vengeance. Nausea, headache fatigue. All most of us on this stuff have experienced. I got vitiligo 7 years after first melanoma on leg and 3 years befor discovering the second and third on my leg. Now it’s inside and on this treatment. You offer some hope , really happy for you.  MIke K. 

            • June 11, 2018 at 2:52 pm
            Coach2u
            Participant

              Great news, I have also seen Dr. Hamid and will go back if lip/nivo does not work. BTW hope it worked for her, you did not mention.  

              • June 8, 2018 at 10:35 pm
              Coach2u
              Participant

                Thanks Ed very informative video  and gives me more questions to ask the doctor.  Appreciate it. MIke K.

                • June 8, 2018 at 6:22 pm
                Coach2u
                Participant

                  Sure hope the targeted therapy works for your husband. Sorry Yervoy and Opdivo did not especially since he had to endure the side effects. MIke K.

                  • May 16, 2018 at 12:46 am
                  Coach2u
                  Participant

                    I am so happy for you and so happy to hear a success story. I turned stage 4 this year with tumors on spine and legions on liver. Three months ago there were none. Now on ipi/nivo and hope it will work as Keydruda did not. So much fear and anxiety this story really helps. At this point almost be happy with 3 more years just have new grandson so would like to watch him for a while and enjoy my 3 granddaughters. MIke K.

                    • May 15, 2018 at 11:50 pm
                    Coach2u
                    Participant

                      Sorry to hear that, hang in there MIke. You are my source for what’s to come. I started Ipi/nivo yesterday so far no symptoms. Hope it’s working cause Keydruda did not.  We have to endure and kill this disease, not ready to die. MIke K. 

                      • May 13, 2018 at 8:28 pm
                      Coach2u
                      Participant

                        Thank you Sharon for your story, it gives me some hope as I begin this journey.  Thanks for the advice on the rash, I have heard gastrointestinal issues were the worst.  Anyway if is shrinks my 3 tumors, I will be thrilled. Since this will be my first and we will be back home before second infusion hoping the initial side effects will allow me to go. We are in a pretty bad place right now and getting away from the emotions might help.  Congrats on your improvements may they continue and have a terrific cruise. MIke K.

                        • May 13, 2018 at 3:33 pm
                        Coach2u
                        Participant

                          Hey MIke, glad you are giving updates. I am the one starting tomorrow as Keydruda did not work for me either. I did not have any side effects at all after four sessions but maybe cause it wasn’t working. I am also the guy who is supposed to go out of country on river cruise next week. You said before go but now what do you think? I will make a decision later this week. Also getting second and third opinion this week. Third opinion is about what to do if Opdivo and Yervoy don’t work. I will share any info. He said something about t-cells find out more Wednesday. Good luck to everyone. MIke K 

                          • May 11, 2018 at 4:01 am
                          Coach2u
                          Participant

                            Hey Melanoma MIke let me know how your first session goes please. Immediate side effects or whatever  I go in Monday. Coach2u or MIke K

                            • May 11, 2018 at 3:56 am
                            Coach2u
                            Participant

                              Happy for you Bill, May your luck continue. Unfortunately for me I’m in Mikes shoes too. Keytruda did not work and now 4 months after mostly clean scan and 4 sessions, 3visable tumors. I have been dealings with this on my leg for 13 years and only surgery so this immunotherapy is new to me. Next up as MIke obdivo and Yervoy.  Congrats hope to join you soon.  MIke K

                              • May 10, 2018 at 12:43 am
                              Coach2u
                              Participant

                                They think it’s ok and claim that the effects are  cumulative so after first dose it takes a while for them  to kick in. Obviously not your experience. So for some no problems, one guy had no gastrointestinal issues and attributed that to probiotics. I should have about one week after infusion so maybe my body will answer for me.  Appreciate your input, BTW Keydruda did not work for me. I had no symptoms at all and was thrilled until latest scan showed growth. Hope you have much better luck, it worked well for my sis in law with lung cancer. She is now in remission. 

                                • May 9, 2018 at 5:56 pm
                                Coach2u
                                Participant

                                  Thanks Ed, I will review all this info. The doctor did say go, and that he would prescribe some steroids to take along, but after reading the side effects, they seem pretty severe and maybe being out of the country is not the place to be when stuff happens. Steroids have their own set of problems. Not to mention with this diagnosis just received yesterday the wind is pretty much out of my sails at least for now. River cruise in Germany with wine and cheese tasting May not be the thing to do with two tumors on my liver.  Then Again why not. I have an infusion Saturday and a week before departure. Not sure of anything right now, total shock and fear. Mike

                                  • May 9, 2018 at 5:44 pm
                                  Coach2u
                                  Participant

                                    Tracey interesting one of my tumors is also in T-12, and you said radiation helped with what side effects? Although I also have 2 more on my liver. The doctor mentioned radiology but I think that’s  after the immunotherapy.  I am fortunate to have a loving wife, two sons and daughters in law and 4 grandchildren. One just born, a boy. Guess he is my replacement.  Anyway it’s difficult enough to do this with support I can’t imagine without. Wish you all the luck in the world. Mike

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