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Update on Trial and New Scan
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Update on Trial and New Scan

› Forums › General Melanoma Community › Update on Trial and New Scan

  • Post
    • May 3, 2016 at 7:40 pm
    nlac26
    Participant

      Hey everybody! April 14th ended my first cycle of the clinical trial I'm participating in. What a blessing to say I finished without any problems or major side effects. My study involves Nivo infusions every 2 weeks and I take two pills a day of what the Trial coordinators are now offically calling "epacadostat" instead of some big long number. It's always an interesting trip to the hospital every couple weeks because you never know what new thing the trial people have come up with that has to be included. One trip it could be, we now need 2 EKG's, one before infusion and after…or a stair walking stress test or more blood. I never know, I just roll with the punches and am very fortunate to have a wonderful, humourous trial coordinator I work with every single time. Sometimes we get to joking and laughing so loud I'm sure they can hear us all the way down into the waiting room. Hey, if I've got to be there, it's nice to have someone that can make me laugh and who's standing in my corner fighting for my well being too. 

      I had my first follow up CT on April 25th which is standard for the end of each cycle. We had held out for great news and some what recieved what we prayed for…but as we all know, melanoma is a tricky bitch and can surprise you on a dime. My original tumor in my left axillary lymph nodes measured 25 x 23 mm on 02/19/2016. After one full cycle of treatment, it has shrunk to 24 x 19 mm. I mean, that's not the best but at least it's not growing! And that's only 4 infusions so far. The weird part about the scan was the NEW tumor that popped up right next to it, side by side, measuring 25 x 18 mm. Talk about a jaw dropping moment when the doc first pulled up the scans. But what I was told and what my scan read out as,  it is indicative of necrosis and more than likely dead. What?! So, in a matter of 8 weeks, I had another large tumor grow and then just die? Has anybody else had this before? It's hard to know what to feel exactly. Sucks there's a new spot but if it's dead then should I throw a fit or just move on? The doc did say there is no certain way to tell if it's completely necrotic without removing it and we're not opting for surgury right now. We decided to stick with the plan and trial and keep pushing forward. Last Thursday the 28th i had my first infusion of cycle 2. I'm fortunate the drugs don't bother me too bad. I'm like a sleepy zombie when I walk out infusion days and I nap pretty good for a couple days, then it's back to work and life like normal. My husband and I actually ran a 5k Saturday morning and it felt awesome to be out moving in the fresh air.  Here's to keepin' on and reaching forward! God bless all of you out there and best wishes! Niki

    Viewing 20 reply threads
    • Replies
        • May 3, 2016 at 10:31 pm
        BrianP
        Participant

          Very cool Niki.  Congrats on the first phase results and minimal side effects.  That is an interesting development with the new tumor popping up.  Maybe you can get a PET scan in the near future to see if you can get any additional info on it.  I did that a couple times during the course of my two year trial.  Best of luck to you going forward.

          Brian

          • May 3, 2016 at 10:31 pm
          BrianP
          Participant

            Very cool Niki.  Congrats on the first phase results and minimal side effects.  That is an interesting development with the new tumor popping up.  Maybe you can get a PET scan in the near future to see if you can get any additional info on it.  I did that a couple times during the course of my two year trial.  Best of luck to you going forward.

            Brian

              • May 4, 2016 at 4:47 pm
              nlac26
              Participant

                Thanks Brian! I actually did 4 rounds of Yervoy last fall and they had me do a Pet Scan in December to see how well it worked. That scan showed my original tumor was still growing. So, per the treatment plan, they had me come back in 4 weeks and do ANOTHER pet scan this past January and there was no change in my tumor..but it never showed any other major spots. That's when they decided to put me into a trial. On Feb 19th I had a CT and brain MRI and there were no extra spots then either. This second spot literally just popped up within the last 2 months. Very aggrevating when you're doing everything you're suppose to do and more confusion gets thrown into the mix. Thanks for the luck and best wishes to you as well! 🙂

                • May 4, 2016 at 4:47 pm
                nlac26
                Participant

                  Thanks Brian! I actually did 4 rounds of Yervoy last fall and they had me do a Pet Scan in December to see how well it worked. That scan showed my original tumor was still growing. So, per the treatment plan, they had me come back in 4 weeks and do ANOTHER pet scan this past January and there was no change in my tumor..but it never showed any other major spots. That's when they decided to put me into a trial. On Feb 19th I had a CT and brain MRI and there were no extra spots then either. This second spot literally just popped up within the last 2 months. Very aggrevating when you're doing everything you're suppose to do and more confusion gets thrown into the mix. Thanks for the luck and best wishes to you as well! 🙂

                  • May 4, 2016 at 4:47 pm
                  nlac26
                  Participant

                    Thanks Brian! I actually did 4 rounds of Yervoy last fall and they had me do a Pet Scan in December to see how well it worked. That scan showed my original tumor was still growing. So, per the treatment plan, they had me come back in 4 weeks and do ANOTHER pet scan this past January and there was no change in my tumor..but it never showed any other major spots. That's when they decided to put me into a trial. On Feb 19th I had a CT and brain MRI and there were no extra spots then either. This second spot literally just popped up within the last 2 months. Very aggrevating when you're doing everything you're suppose to do and more confusion gets thrown into the mix. Thanks for the luck and best wishes to you as well! 🙂

                  • May 3, 2016 at 10:31 pm
                  BrianP
                  Participant

                    Very cool Niki.  Congrats on the first phase results and minimal side effects.  That is an interesting development with the new tumor popping up.  Maybe you can get a PET scan in the near future to see if you can get any additional info on it.  I did that a couple times during the course of my two year trial.  Best of luck to you going forward.

                    Brian

                    • May 3, 2016 at 11:18 pm
                    eric w
                    Participant
                      • May 3, 2016 at 11:18 pm
                      eric w
                      Participant
                        • May 3, 2016 at 11:18 pm
                        eric w
                        Participant
                          • May 4, 2016 at 1:13 pm
                          Bubbles
                          Participant

                            Sounds like you are doing really well overall, Niki! But yes, a new anything on a scan is certainly disconcerting! However, we have a growing body of knowledge that many patients do have "early progression" or "pseudoprogression" on various immunotherapies. Patients used to be taken out of trials or off treatment because it was deemed that when that happened the treatment "wasn't working"! Now we know better. A recent catch phrase from researchers is:  'Be patient with the patient'! 

                            Here's just one of many articles on the subject: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-big-dogs-review-results-of-pts.html

                            Hang in there and keep on running! I wish you well! Celeste

                            • May 4, 2016 at 1:13 pm
                            Bubbles
                            Participant

                              Sounds like you are doing really well overall, Niki! But yes, a new anything on a scan is certainly disconcerting! However, we have a growing body of knowledge that many patients do have "early progression" or "pseudoprogression" on various immunotherapies. Patients used to be taken out of trials or off treatment because it was deemed that when that happened the treatment "wasn't working"! Now we know better. A recent catch phrase from researchers is:  'Be patient with the patient'! 

                              Here's just one of many articles on the subject: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-big-dogs-review-results-of-pts.html

                              Hang in there and keep on running! I wish you well! Celeste

                              • May 4, 2016 at 1:13 pm
                              Bubbles
                              Participant

                                Sounds like you are doing really well overall, Niki! But yes, a new anything on a scan is certainly disconcerting! However, we have a growing body of knowledge that many patients do have "early progression" or "pseudoprogression" on various immunotherapies. Patients used to be taken out of trials or off treatment because it was deemed that when that happened the treatment "wasn't working"! Now we know better. A recent catch phrase from researchers is:  'Be patient with the patient'! 

                                Here's just one of many articles on the subject: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-big-dogs-review-results-of-pts.html

                                Hang in there and keep on running! I wish you well! Celeste

                                  • May 4, 2016 at 4:50 pm
                                  nlac26
                                  Participant

                                    Thank you Celeste! My doc tells me the same thing! Sometimes it might appear worse before it gets better. It's hard to be patient with the process but I hold steady! Thank you again for the info! 

                                    • May 4, 2016 at 4:50 pm
                                    nlac26
                                    Participant

                                      Thank you Celeste! My doc tells me the same thing! Sometimes it might appear worse before it gets better. It's hard to be patient with the process but I hold steady! Thank you again for the info! 

                                      • May 4, 2016 at 4:50 pm
                                      nlac26
                                      Participant

                                        Thank you Celeste! My doc tells me the same thing! Sometimes it might appear worse before it gets better. It's hard to be patient with the process but I hold steady! Thank you again for the info! 

                                      • May 4, 2016 at 1:15 pm
                                      JuTMSY4
                                      Participant

                                        Very interesting.  I think the important part is how you feel.  It sounds like, if you ran a 5K, that you feel pretty good all things considered.  If that's the case and without showing any growth, I think you should be very pleased.  

                                        Is it possible that they just didn't see the 2nd tumor before or some other scan based error?  Seems like a big spot to miss or grow.  Second, maybe a PET might reveal more information as to your status?  Maybe the next time you go you could get one?  

                                        In any event, I see it as positive (shrinkage!).  Good luck!

                                        Justin

                                        • May 4, 2016 at 1:15 pm
                                        JuTMSY4
                                        Participant

                                          Very interesting.  I think the important part is how you feel.  It sounds like, if you ran a 5K, that you feel pretty good all things considered.  If that's the case and without showing any growth, I think you should be very pleased.  

                                          Is it possible that they just didn't see the 2nd tumor before or some other scan based error?  Seems like a big spot to miss or grow.  Second, maybe a PET might reveal more information as to your status?  Maybe the next time you go you could get one?  

                                          In any event, I see it as positive (shrinkage!).  Good luck!

                                          Justin

                                          • May 4, 2016 at 1:15 pm
                                          JuTMSY4
                                          Participant

                                            Very interesting.  I think the important part is how you feel.  It sounds like, if you ran a 5K, that you feel pretty good all things considered.  If that's the case and without showing any growth, I think you should be very pleased.  

                                            Is it possible that they just didn't see the 2nd tumor before or some other scan based error?  Seems like a big spot to miss or grow.  Second, maybe a PET might reveal more information as to your status?  Maybe the next time you go you could get one?  

                                            In any event, I see it as positive (shrinkage!).  Good luck!

                                            Justin

                                            • May 4, 2016 at 2:27 pm
                                            ed williams
                                            Participant

                                              Hi Niki, here are a couple of Articles about epacadostat (IDO inhibitor).      http://www.cancernetwork.com/smr-2015/epacadostat-pembrolizumab-combo-shows-activity-advanced-melanoma     and a second more recent and detailed article with Dr. Atkins as one of the authors,  https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0571-0  . I hope you find them of some value!!!! Ed

                                              • May 4, 2016 at 2:27 pm
                                              ed williams
                                              Participant

                                                Hi Niki, here are a couple of Articles about epacadostat (IDO inhibitor).      http://www.cancernetwork.com/smr-2015/epacadostat-pembrolizumab-combo-shows-activity-advanced-melanoma     and a second more recent and detailed article with Dr. Atkins as one of the authors,  https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0571-0  . I hope you find them of some value!!!! Ed

                                                • May 4, 2016 at 2:27 pm
                                                ed williams
                                                Participant

                                                  Hi Niki, here are a couple of Articles about epacadostat (IDO inhibitor).      http://www.cancernetwork.com/smr-2015/epacadostat-pembrolizumab-combo-shows-activity-advanced-melanoma     and a second more recent and detailed article with Dr. Atkins as one of the authors,  https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0571-0  . I hope you find them of some value!!!! Ed

                                                  • May 4, 2016 at 2:27 pm
                                                  ed williams
                                                  Participant

                                                    Hi Niki, here are a couple of Articles about epacadostat (IDO inhibitor).      http://www.cancernetwork.com/smr-2015/epacadostat-pembrolizumab-combo-shows-activity-advanced-melanoma     and a second more recent and detailed article with Dr. Atkins as one of the authors,  https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0571-0  . I hope you find them of some value!!!! Ed

                                                    • May 4, 2016 at 2:27 pm
                                                    ed williams
                                                    Participant

                                                      Hi Niki, here are a couple of Articles about epacadostat (IDO inhibitor).      http://www.cancernetwork.com/smr-2015/epacadostat-pembrolizumab-combo-shows-activity-advanced-melanoma     and a second more recent and detailed article with Dr. Atkins as one of the authors,  https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0571-0  . I hope you find them of some value!!!! Ed

                                                      • May 4, 2016 at 2:27 pm
                                                      ed williams
                                                      Participant

                                                        Hi Niki, here are a couple of Articles about epacadostat (IDO inhibitor).      http://www.cancernetwork.com/smr-2015/epacadostat-pembrolizumab-combo-shows-activity-advanced-melanoma     and a second more recent and detailed article with Dr. Atkins as one of the authors,  https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0571-0  . I hope you find them of some value!!!! Ed

                                                        • May 20, 2016 at 1:39 am
                                                        jade1111
                                                        Participant

                                                          Niki

                                                          I just responded to another thread of yours. And then saw the update. So glad its going well! My mom is considerinf starting the same trial this month so all of this information is very helpful. Where are you doing the actual trial out of curiosity?

                                                           

                                                          All the best!!!

                                                          • May 20, 2016 at 1:39 am
                                                          jade1111
                                                          Participant

                                                            Niki

                                                            I just responded to another thread of yours. And then saw the update. So glad its going well! My mom is considerinf starting the same trial this month so all of this information is very helpful. Where are you doing the actual trial out of curiosity?

                                                             

                                                            All the best!!!

                                                            • May 20, 2016 at 1:39 am
                                                            jade1111
                                                            Participant

                                                              Niki

                                                              I just responded to another thread of yours. And then saw the update. So glad its going well! My mom is considerinf starting the same trial this month so all of this information is very helpful. Where are you doing the actual trial out of curiosity?

                                                               

                                                              All the best!!!

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