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cf91

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      cf91
      Participant

        I am currently on Keytruda. Had my 3rd dose last week.  I was on Opdivo back in 2015 but was taken off  after 6mos because I stopped responding.  I tolerated both well with few side effects.  Both caused fatigue, itchiness, minor rash and soreness at site of tumor (upper right maxillary).  I know everyone is different, but in my experiences with both, I can't complain.  I just hope that I respond better with the Keytruda.  Good luck!

        cf91
        Participant

          I was in this study but ended up not working for me.  Overall side effects were manageable, fatigue, achy and some joint pain.  Wishing your mom well and that this works for her.

          cf91
          Participant

            After reading your post, I wanted to let you know that I have tried 2 of the trials you metioned.  Quick background.  Stage 4 since 2014.  Primary unknown, braf neg.  Tried IL-2, yervoy, opdivo all with limited response.  Was sent to Dallas for geneic trail and was put on Palbociclib.  I stopped responding on that after 6 mos, but side effects were very tolerable.  Dr decided to put me in the trial of Glembatumab & Varililumab.  I go next week for scans, but can tell you that I can tell a big difference in my tumor (tumor in maxillary area). Has started shrinking already.  Even the dr was suprised at the respone when he checked it at my last apt.  I will be up front and let you know that side effects have been somewhat difficult.  Diarrhea, loss of appetite, fatigue, hair loss and horrible rash & itchy.  For me, these start around the 3rd day after infusion and last about a week.  I know everyone is different, so may not be as bad for your mom.  I hope this helps in some way. 

            cf91
            Participant

              Thanks Celeste!  You always have the answers:)

              cf91
              Participant

                Thank you for your info! I will keep fighting!!

                cf91
                Participant

                  I'm currently in a trial of Glembatumuab & Varlilumab.  Thursday will be my 6th dose.  Should also get scan results then so keeping my fingers crossed.  This treatment has been the toughest on me (this makes my 5th different treatment & second trial).  I have lost my hair, extreme joint pain in my legs, blister like rash that burns, loss of appetite and itchiness.  I know not everyone responds the same, so I wish you the best of luch!  Keep us posted.

                  cf91
                  Participant

                    Thank you Celeste for the info!

                    cf91
                    Participant

                      I too will be doing the trial that Paul is taking about.  I should start next week.  Had to redo MRI & CT scans since last scans in Dec was considered "out of the time line" for the sponsor.  Paul, when will you start your treatments?  Please keep us posted as I will also.  Anon, hope this info helps and best of luck to you!

                      cf91
                      Participant

                        I too will be doing the trial that Paul is taking about.  I should start next week.  Had to redo MRI & CT scans since last scans in Dec was considered "out of the time line" for the sponsor.  Paul, when will you start your treatments?  Please keep us posted as I will also.  Anon, hope this info helps and best of luck to you!

                        cf91
                        Participant

                          I too will be doing the trial that Paul is taking about.  I should start next week.  Had to redo MRI & CT scans since last scans in Dec was considered "out of the time line" for the sponsor.  Paul, when will you start your treatments?  Please keep us posted as I will also.  Anon, hope this info helps and best of luck to you!

                          cf91
                          Participant

                            I'm sorry to hear what you had to go through.  Hope your doing well now.  I'm glad you posted the link to the study.  I'm actually starting this trial next week in Dallas.  I feel like I'm starting to run out of options as this will make my 6th different treatment.  Keeping my fingers crossed!!

                            cf91
                            Participant

                              I'm sorry to hear what you had to go through.  Hope your doing well now.  I'm glad you posted the link to the study.  I'm actually starting this trial next week in Dallas.  I feel like I'm starting to run out of options as this will make my 6th different treatment.  Keeping my fingers crossed!!

                              cf91
                              Participant

                                I'm sorry to hear what you had to go through.  Hope your doing well now.  I'm glad you posted the link to the study.  I'm actually starting this trial next week in Dallas.  I feel like I'm starting to run out of options as this will make my 6th different treatment.  Keeping my fingers crossed!!

                                cf91
                                Participant

                                  I'm stage 4.  Diagnosed in 2014. Primary unknown.  This makes my 6th different treatmet  as all others have failed or I've only gotten partial  response.   It has been a long hard road, but we can't stop fighting.  I should be going back next week to start  the clinical trial.  I wish the very best for you!

                                  cf91
                                  Participant

                                    I'm stage 4.  Diagnosed in 2014. Primary unknown.  This makes my 6th different treatmet  as all others have failed or I've only gotten partial  response.   It has been a long hard road, but we can't stop fighting.  I should be going back next week to start  the clinical trial.  I wish the very best for you!

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