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daughter1

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      daughter1
      Participant

        I am literally reading this from the hospital with my mother as we speak and the answer is ALWAYS ask them to consult your melanoma specialist.   ❤️

        daughter1
        Participant

          Please excuse the terrible writing.  I don't know how to go back and edit.  I haven't slept much.  I also didn't mention.  Mom- 2 rounds of combo ipi/nivo had to come off because of terrible liver and kidnery numbers, etc.   just opdivo every two weeks for almost a year very successfully.   Slowly but definite shrinkage in all tumors and more importantly no progression or new ones.   (liver and spleen)

          daughter1
          Participant

            you just literally made my day.  My mother is currently on opdivo every two weeks after having two treatments of ipi/nivo (she wasn't given the third treatment due to side effects)   She seems to be doing very well on the Opdivo but we will have to wait another month to get the cat scan.   I am praying that its working alone.   I don't see too many people on here with liver mets.  We werent told how many, etc.  But one of the tumors was rather large (the results from very first cat scan after her two ipi/nivo- were positive results and slowly these tumors seems to be shrinking in size and appearing less dense.)   I still don't understand why they just can't remove the cancerous part of her liver.  It is in her spleen too but can't that be removed as well?  Look at me wanting my mom to get all her organs removed!  I just love her so much and want this melanoma to get out of her body.    I can't tell you how happy I am of your news.  Thanks for sharing.  It made my day. 

            Robin

            daughter1
            Participant

              I am curious To read the answers because my mother is halfway through treatments.  First treatment little no side effects.  After second, she has had a fever every single day and feels horrible 

              daughter1
              Participant

                I am reading this from my phone so i can’t respond like i want to.  Please excuse the errors.  I am in shock and so sorry about the negligence.  I am going to re read this tomorrow.   I can’t believe this.  I don’t understand why these doctors don’t err on the side of caution. I don’t get it.  What a strong woman you are.  You will get through this for sure.  Look at what you have accomplished.  Be well. 

                Robin 

                daughter1
                Participant

                  I am reading this from my phone so i can’t respond like i want to.  Please excuse the errors.  I am in shock and so sorry about the negligence.  I am going to re read this tomorrow.   I can’t believe this.  I don’t understand why these doctors don’t err on the side of caution. I don’t get it.  What a strong woman you are.  You will get through this for sure.  Look at what you have accomplished.  Be well. 

                  Robin 

                  daughter1
                  Participant

                    Thank you so much for your replies.  I am hopeful from your replies but the tumors didn't shrink all that all that much. He did comment that they looked "dead" but they didn't shrink a lot.   I guess we will see.   Thanks again.   You are so kind for writing me back.  Very kind. 

                    daughter1
                    Participant

                      Thank you so much for your response.  I appreciate it.  Ofcourse I am a nervous wreck that it spread to her bones.  UGH

                      daughter1
                      Participant

                        I can't thank you enough for taking the time to respond so selflessly.  You have given me hope. God Bless.

                        daughter1
                        Participant

                          I AM SORRY it took me so long to respond.  I thank you all for taking the time to respond to my post.  I dont know what to say anymore except that I am holdling on to all the wonderful hope that is here and I am blocking out the horrible realities that can occur.  I will continue to pray for my wonderful mother and for Kristine.  

                          daughter1
                          Participant

                            We just left the hospital and my mom is upset that she could not receive her third treatment   she has been having fevers for the past few weeks and her levels are not where he wants them to be.  He is going to put her on steriods and give her a little break from it.  The good news is that doctor sees shrinkage and when she receives her next treatment, he is going to remove the yervoy.    this is good, right?   

                            daughter1
                            Participant

                              Thank you so much for your replies.  I can't tell you how much they mean to me. Truly so very thankful for all of you.

                              daughter1
                              Participant

                                OMG Mat!!  Thank you so much for replying.  Just taking the few minutes to do that is going to help us through.  My mother is in horrible pain.  I know everyone has different results but the fact that you felt better within a week is miraculous.  She starts her treatment Monday.  She has a large mass on her liver 4.4 cm since her last scan which was 4 weeks ago.  I would do anything to have her feel better.  Thanks for sharing.  I hope you don't mind if I ask you more questions along the way.  

                                Sincerely,

                                Robin

                                daughter1
                                Participant

                                  Thank you so very much Judy for your reply.  This board is what is getting us through.  Why do they deem something unresectable?  Doesnt the liver regenerate well?  She has a 4cm mass on her liver? Why not just get rid of it and then treat the smaller ones (not sure if there are) with the opdivo/kervoy?  

                                  daughter1
                                  Participant

                                    Thank you for your reply.  I appreciate it. I am so scared. 

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