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Patrisa

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      Patrisa
      Participant
        Hi Ellen,

        my father had a very similar situation, when he progressed to stage IV, he got many mets to his lungs and also a 10cm in diameter size lump on his back.

        he started keytruda and now for almost 5 years he is NED.

        I believe in keytruda, it did an amazing job for my dad and so many others…

        take care,

        patrisa

         

        Patrisa
        Participant
          Dear THMoore,

          My father, after progressing to stage IV (lung metastasis) was given only keytruda and he got to a NED status after 3 months. He has been off keytruda for 17 months now and his last CT scan was clear. He didn’t have any side effects, except some minor vitiligo on his face. Good luck with your treatment, i think, given your staging, you could benefit from a single agent, they can still, should there not be a great response, change it to the combo.

          Take care,

          Patrisa

          Patrisa
          Participant
            Dear caman,

            My father was on keytruda for three years. His visible met was on his back, really huge (half a tennis ball) and we noticed it getting smaller almost immediately. In three months it was almost gone (just some minor suv activity detected). It also worked beautifully on his lung mets.
            So, i am not surprised if you see results after a week, because it happened to us.
            I wish you all the best in your fight and hope that you get the greatest of results too!!
            Love,
            Patrisa

            Patrisa
            Participant

              Dear anon,

              there are no stupid questions, the disease is scary and every little reassurance helps.

              My father has been on keytruda for three years and in the first year there was no sign of vitiligo… i was worried because i hoped for white patches all over due to the belief that it is a good indicator that the juice is working… in the second year he developed some minor vitiligo on his face, no white hair and it also seemed to diminish in time… 

              he has been ned for 2,5 years so in our case,  no vitiligo? So what, it worked without it :-))

              Take care,

              patrisa

              Patrisa
              Participant

                Dear Happygal,

                so sorry to hear about your reoccurrence, but  don't lose hope too soon… there are many options to choose from treatment wise, the combo beeing one of the best! People have turned incurable heavy burdens to NED and so can you! Since mono therapy worked for you, the chances are good that the combo will too!!

                Stay positive and calm, you can do this!!!

                Wish you all the best,

                 

                Patrisa

                Patrisa
                Participant

                  Hi,

                  my fathers ldh levels were always in the normal range, even with mets in his lungs, so for me, this marker is not that important…

                  In my country they also do S-100 marker and it was always higher than normal when he had mets, now it's in normal range… so for us at least, it was always more reliable than ldh…

                  Patrisa

                  Patrisa
                  Participant

                    Dear Celeste,

                    once again you are pioneering and I would always bet on whatever you decide! You are the fiercest lady out there and I strongly believe you will once again come out of it as a champion!

                    Sending prayers and love your way,

                    Patrisa

                    Patrisa
                    Participant

                      Dear Mike, I rarely post these days, cause my father is doing well and we can relax more now, however I read the posts ofen, cheer for everyone struggling, Especially you! You remind me so much of our friend Josh, your positive attitude and perseverance are just amazing!

                      I think operation is always the best option if possible, if I were in your shoes i would do the exact the same thing! 

                      Good luck and believe everything will be ok! 

                      Prayers, thoughts and love!

                      Patrisa from Slovenia 

                      Patrisa
                      Participant

                        Great hukill, stay NED FOREVER!!!!

                        patrisa

                        Patrisa
                        Participant

                          Dear keyode10910,

                          so sorry you have progressed to stage IV, but  ! You have come to the right place for advice and most important, things have changed since 10 years ago sooo much….

                          My father has also been, after his stage III diagnosis, on interferon for a whole year and it was BRUTAL! he felt so bad the first month,  the rest of the year was better, but oh he felt it as well…

                          After he progressed to stage IV three years later, he was put on keytruda and has been on it ever since ( 2 years and counting)…. No major side effects except some vitiligo ( minor) on his face and just recently he developed some thyroid issues ( wouldn't know he has them but his blood work says so), so keytruda has been for him nothing but a blessing! He is currently NED, we hope he stays that way forever!

                          He works, goes hiking, does everything without any problems, just like before….

                          I hope keytruda will be just as kind to you and you will kick mels a… !!!

                          Take care,

                          Patrisa

                          Patrisa
                          Participant

                            Congratulations Jenn, you soooo deserve it!!! 

                            Patrisa
                            Participant

                              Love your attitude Mike, kick that mel to the curb!

                              Take care, 

                              Patrisa

                              Patrisa
                              Participant

                                Dear Julie, you are such an inspiring person! Great news! I hope when radiation is over you will be done with it!

                                Take care!

                                Patrisa

                                Patrisa
                                Participant

                                  Dear Tex,

                                  my father has been on keytruda since Jan 2016, he hasn't had any bad side effects, just some vitiligo on his face… maybe some fatigue on the day of the treatment, but i think that is more due to the fact that he is stressed out on that day… 

                                  Just recently his THS levels have gone up, but they are not treating it just yet…

                                  For him, it has been a miracle drug ( stage IV), hope it's the same for you…

                                  Take care,

                                  Patrisa

                                  Patrisa
                                  Participant

                                    Nick,

                                    my father felt the same way, didn't feel a thing from pembro, but he got a complete response anyway! We are all different and hopefully pembro works just as well for you!

                                    Take care,

                                    Patris

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