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Scooby123

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      Scooby123
      Participant

        Hi Jennifer

        I have been off Keydruda over 16 months , but my last scan showed lymph node up in chest so I have had a pet scan.

        Unfortunately it turns out active plus other areas as well. I am devastated as I completed 2 years of treatment no issues.

        My experience was my upper chest felt sore to touch and felt off plus voice was going. I am now starting keydruda  again and  praying it works as braf negative.

        Wishing you all the best and hope not mel xx

         

        Scooby123
        Participant

          TexMelanomex: Warriors,

           

          I have been absent for quite some time and it is with a heavy heart that I tell you “Melanoma” Mike passed on 17 DEC. I received a text from his wife last night letting me know. For those of you who knew Mike, you can attest to his inspirational messages and his warrior spirit. He was one of my first friends here on the forum and we became closer outside of the forum. Mike was a kind, funny, and supportive warrior and he will be missed tremendously. Until we find a lasting cure for this bastard of an enemy…I hope we can all be more like Mike. Rest easy brother.

          Tex

          Celebrate

          Love

          Ah Ah

          Wow

          Sad

          Grrr

          Please forgive me this is my first time using new forum.

          Such sad news to hear Melanoma Mike has passed. He was a true warrior and always had a good sense of humour. He will be missed by many god bless you my fiend. ????

          Scooby123
          Participant
            Hi Mike , I have just been thinking how you was so logged on. So sorry you are in a lot of pain . Hope they get you more comfortable.
            You are strong, brave so get your fighting head on and kick some arse.
            Sending love strength .
            Scooby123
            Participant
              Hi Maryb-z
              I am just about to post update on my treatment. I have been on keydruda nearly 3 years now. Been NED for 18 months since on treatment. We have made decision to have my last dose on monday. I am nervouse about coming off but same time happy for a break. Very hard decission to make . I have had no bad side effects but could still develop them at any time. I can resume treatment if need to if returns . Some people stop once reached NED regardless of how long have been having it. Some stop for bad side effects but still either NED or stable. Think its your choice with sound of it. See what others say , sure you will get other views on it .Wishing you well.
              Scooby
              Scooby123
              Participant
                Hi Ann,
                I have had my last two infusion with the double dose. I have found that it has made me have a few more bowl movements, but once took meds settled down. I have had 46 doses now and apart from joint pain bowel issue on and off been ok.
                Hooe all goes well ,
                Scooby
                Scooby123
                Participant
                  Hi Mike so good you managed to pop on say hello and update us. You are a tough cookie hun. Sorry your struggling with pain, but glad you have a great team beside you. Will be praying for you and keep popping in .you can do this mike keep strong my friend
                  Scooby
                  Scooby123
                  Participant
                    Thinking of you Mike , keep strong sending big hug
                    SCOOBY
                    Scooby123
                    Participant
                      Sorry to hear this Mike, praying that it is treatment which is attacking the tumours. You are a strong man and am sure you will keep fighting and not letting this beat you down. My prayers are with you and sending strength, love and hugs
                      Scooby ❤
                      Scooby123
                      Participant
                        Thanks jackie , glad you are doing well too.
                        Scooby
                        Scooby123
                        Participant
                          Hi Celeste,
                          Thanks hun for message and all the updates on treatments, all data on mel. Your the best when need info..
                          Hope you are keeping well and safe at this crazy time our world is right now.
                          SCOOBY
                          Scooby123
                          Participant
                            Hi Mark
                            Thanks for reply, so pleased you still off meds and doing well. Such a rollercoaster this desiase is. Always have to be prepared with each every scan.
                            Scooby
                            Scooby123
                            Participant
                              Hi melanie
                              I hope your results will be good for you. For me was a long dark time getting to NED. Started my journey 2011 , over the years I have had melanoma in liver, lungs, other areas in body, brain tumour, plus was very poorly in 2018 with a stomach tumour. Had 9 bags blood over 3 weeks very weak. I will do my best to keep fighting and dont know what will be next.
                              Keep your strength up, positive thoughts.
                              Pray for good scans for you.
                              Scooby
                              Scooby123
                              Participant
                                Hi Mark,
                                I am braf negative my first treatment was ippi which reduced my tumours by 50% . That was in 2013, I had a good run till 2015 brain tumour so Gamma knife to treat that. Then 2017 had car accident not sure if this started it again but had it in chest lymph nodes. So went on pembro. Had a tumour in stomach removed by surgery for that. I have had good year on treatments with little side effects . There is good treatments here yes they stick to guidelines not like in other countries they mix treatments like you had and trials available. Hard dicession on if coming to UK but I have responded well so far on treatment . Will be nice to have a break but will be nervous about it.
                                Wishing the best
                                SCOOBY X
                                Scooby123
                                Participant
                                  Hi Celeste, thank you me lovely. Hope you are doing well too. Had a lovely christmas back to hospital tomorrow bloods and check up. Back in Thursday for treatment.
                                  Take care
                                  Lynda xx
                                  Scooby123
                                  Participant
                                    Hi Melanie yes it is good news thanks, so sorry for your loss too. Think sometimes everything comes at once and when you are dealing with this awful disease yourself just gets too you . So thankful for my clear scans and will enjoy them hoping for ever.
                                    Will keep praying for you to get to NED and everyone else. Xx
                                    Scooby
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