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Stable and Holding
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Stable and Holding

› Forums › General Melanoma Community › Stable and Holding

  • Post
    • October 4, 2014 at 2:09 am
    BrianP
    Participant

      Just got my third 12 week scan in a row with the two key phases "Grossly stable" and "no new metastasis".  Not sure why they use the term "grossly stable".  I think "awesomely stable" is a better description.

      For a quick recap, I started last August in a Nivo/Ipi/Nivo sequential trial with 4 cm and 3 cm nodes around the liver area.  After 12 weeks of Nivo the two nodes were about 40% smaller.  After the next 12 weeks of Ipi nodes were mostly unchanged but had numerous new mets in my lungs.  Ever since returning to nivo the lung mets have completely resolved and the two original nodes are holding steady.   

      The durability reports of the anti-PD1 drugs gives me hope that I can stay this way for quite some time.  Not sure what will be next come August when the trial is scheduled to end.  I listen with great interest to those on the tip of the spear like Celeste and Laurie to see what they are hearing on that front.  Right now I'm just counting my blessings and so thankful for these new wonderful drug options.

      Brian

    Viewing 32 reply threads
    • Replies
        • October 4, 2014 at 2:30 am
        arthurjedi007
        Participant

          Awesome Brian 🙂

          Artie

          • October 4, 2014 at 2:30 am
          arthurjedi007
          Participant

            Awesome Brian 🙂

            Artie

            • October 4, 2014 at 2:30 am
            arthurjedi007
            Participant

              Awesome Brian 🙂

              Artie

              • October 4, 2014 at 3:46 pm
              Mat
              Participant

                Brian, great news!  I appreciate the "mixed blessing" of stability (as I've been since early this year).  Still waiting for the report that says "no evidence of disease", but until then, stable is the next best thing.

                • October 4, 2014 at 3:46 pm
                Mat
                Participant

                  Brian, great news!  I appreciate the "mixed blessing" of stability (as I've been since early this year).  Still waiting for the report that says "no evidence of disease", but until then, stable is the next best thing.

                  • October 4, 2014 at 3:46 pm
                  Mat
                  Participant

                    Brian, great news!  I appreciate the "mixed blessing" of stability (as I've been since early this year).  Still waiting for the report that says "no evidence of disease", but until then, stable is the next best thing.

                    • October 4, 2014 at 3:55 pm
                    ed williams
                    Participant

                      Great news Brian!!!! Stable is the new normal for PD-1 users. Wishing you continued grossly stable!!!!Ed

                      • October 4, 2014 at 3:55 pm
                      ed williams
                      Participant

                        Great news Brian!!!! Stable is the new normal for PD-1 users. Wishing you continued grossly stable!!!!Ed

                        • October 4, 2014 at 3:55 pm
                        ed williams
                        Participant

                          Great news Brian!!!! Stable is the new normal for PD-1 users. Wishing you continued grossly stable!!!!Ed

                          • October 4, 2014 at 6:40 pm
                          RJoeyB
                          Participant

                            Good to hear Brian.  I'm always reminding myself that while living scan-to-scan is hard, it's better than the alternative.  And as I've mentioned in other posts, aren't the adjectives great?  "Grossly stable."  My favorite is an MRI report that describes my brain as "unremarkable".  Wonderful in that context, but an insult in any other.  Enjoy your next 12 weeks, may they also be…  unremarkable 😉

                            Joe

                            • October 4, 2014 at 6:40 pm
                            RJoeyB
                            Participant

                              Good to hear Brian.  I'm always reminding myself that while living scan-to-scan is hard, it's better than the alternative.  And as I've mentioned in other posts, aren't the adjectives great?  "Grossly stable."  My favorite is an MRI report that describes my brain as "unremarkable".  Wonderful in that context, but an insult in any other.  Enjoy your next 12 weeks, may they also be…  unremarkable 😉

                              Joe

                              • October 4, 2014 at 6:40 pm
                              RJoeyB
                              Participant

                                Good to hear Brian.  I'm always reminding myself that while living scan-to-scan is hard, it's better than the alternative.  And as I've mentioned in other posts, aren't the adjectives great?  "Grossly stable."  My favorite is an MRI report that describes my brain as "unremarkable".  Wonderful in that context, but an insult in any other.  Enjoy your next 12 weeks, may they also be…  unremarkable 😉

                                Joe

                                • October 4, 2014 at 7:32 pm
                                Bubbles
                                Participant

                                  Hee hee!!!  I KNOW you are awesomely stable!!!  Not sure how much I can tell folks…but I do try to pass on the latest stuff out there!  Folks like you and the others on these regimens will tell the tale for sure!!!!  And so far….you are telling a magnificent one!  Much love, celeste

                                  • October 4, 2014 at 7:32 pm
                                  Bubbles
                                  Participant

                                    Hee hee!!!  I KNOW you are awesomely stable!!!  Not sure how much I can tell folks…but I do try to pass on the latest stuff out there!  Folks like you and the others on these regimens will tell the tale for sure!!!!  And so far….you are telling a magnificent one!  Much love, celeste

                                    • October 4, 2014 at 7:32 pm
                                    Bubbles
                                    Participant

                                      Hee hee!!!  I KNOW you are awesomely stable!!!  Not sure how much I can tell folks…but I do try to pass on the latest stuff out there!  Folks like you and the others on these regimens will tell the tale for sure!!!!  And so far….you are telling a magnificent one!  Much love, celeste

                                        • October 4, 2014 at 9:48 pm
                                        tschmith
                                        Participant

                                          Stable sounds great!  I know we would all love to hear NED and I think that maybe someday we will!  

                                          Stay strong and keep fighting!

                                          Terrie

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                          • October 4, 2014 at 9:48 pm
                                          tschmith
                                          Participant

                                            Stable sounds great!  I know we would all love to hear NED and I think that maybe someday we will!  

                                            Stay strong and keep fighting!

                                            Terrie

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                             

                                            • October 4, 2014 at 9:48 pm
                                            tschmith
                                            Participant

                                              Stable sounds great!  I know we would all love to hear NED and I think that maybe someday we will!  

                                              Stay strong and keep fighting!

                                              Terrie

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                               

                                            • October 4, 2014 at 10:06 pm
                                            LuckyMan51
                                            Participant

                                              Wow. Great stuff. I love reading posts like this! Thanks for sharing.  

                                              • October 4, 2014 at 10:06 pm
                                              LuckyMan51
                                              Participant

                                                Wow. Great stuff. I love reading posts like this! Thanks for sharing.  

                                                • October 4, 2014 at 10:06 pm
                                                LuckyMan51
                                                Participant

                                                  Wow. Great stuff. I love reading posts like this! Thanks for sharing.  

                                                  • October 4, 2014 at 10:07 pm
                                                  LuckyMan51
                                                  Participant

                                                    Wow. Great stuff. I love reading posts like this! Thanks for sharing.  

                                                    • October 4, 2014 at 10:07 pm
                                                    LuckyMan51
                                                    Participant

                                                      Wow. Great stuff. I love reading posts like this! Thanks for sharing.  

                                                      • October 4, 2014 at 10:07 pm
                                                      LuckyMan51
                                                      Participant

                                                        Wow. Great stuff. I love reading posts like this! Thanks for sharing.  

                                                        • October 4, 2014 at 10:30 pm
                                                        jualonso
                                                        Participant

                                                          Congratulations, always good news no new met in scans.

                                                          Hang it there

                                                           

                                                          Jualonso

                                                          • October 4, 2014 at 10:30 pm
                                                          jualonso
                                                          Participant

                                                            Congratulations, always good news no new met in scans.

                                                            Hang it there

                                                             

                                                            Jualonso

                                                            • October 4, 2014 at 10:30 pm
                                                            jualonso
                                                            Participant

                                                              Congratulations, always good news no new met in scans.

                                                              Hang it there

                                                               

                                                              Jualonso

                                                                • October 4, 2014 at 11:57 pm
                                                                Brendan
                                                                Participant

                                                                  Great news, Brian.  Thanks for sharing.

                                                                  Brendan

                                                                  • October 4, 2014 at 11:57 pm
                                                                  Brendan
                                                                  Participant

                                                                    Great news, Brian.  Thanks for sharing.

                                                                    Brendan

                                                                    • October 4, 2014 at 11:57 pm
                                                                    Brendan
                                                                    Participant

                                                                      Great news, Brian.  Thanks for sharing.

                                                                      Brendan

                                                                    • October 6, 2014 at 1:41 pm
                                                                    kpcollins31
                                                                    Participant

                                                                      Congrats, Brian – great to hear!

                                                                      Kevin

                                                                      • October 6, 2014 at 1:41 pm
                                                                      kpcollins31
                                                                      Participant

                                                                        Congrats, Brian – great to hear!

                                                                        Kevin

                                                                        • October 6, 2014 at 1:41 pm
                                                                        kpcollins31
                                                                        Participant

                                                                          Congrats, Brian – great to hear!

                                                                          Kevin

                                                                          • October 6, 2014 at 3:54 pm
                                                                          sweetaugust
                                                                          Participant

                                                                            Hi Brian!

                                                                            WOW…So excited for you!!!  Excellent news!  Love hearing it.  🙂

                                                                            I go in for treatment on Wednesday.  I will try and ask my doctors if my end date for the treatment (MK-3475) now changes due to the trial ending in August 2015.  They have not yet mentioned to me that August 2015 was the end date of the trial…so thank you for that bit of news.

                                                                            As of Oct 31, 2012, I was to be in the trial for 2 years.  Then as of last November 2013, I signed a new contract that states "no end date" for treatment.   And the doctors were quite thrilled to tell me that I could be on MK-3475 for the rest of my life.  So I will be very interested to see if my trial contract now changes again…and how it changes my treatment plan.   I will update you all when I hear.

                                                                            Much health and happiness to you all, Laurie

                                                                            • October 6, 2014 at 3:54 pm
                                                                            sweetaugust
                                                                            Participant

                                                                              Hi Brian!

                                                                              WOW…So excited for you!!!  Excellent news!  Love hearing it.  🙂

                                                                              I go in for treatment on Wednesday.  I will try and ask my doctors if my end date for the treatment (MK-3475) now changes due to the trial ending in August 2015.  They have not yet mentioned to me that August 2015 was the end date of the trial…so thank you for that bit of news.

                                                                              As of Oct 31, 2012, I was to be in the trial for 2 years.  Then as of last November 2013, I signed a new contract that states "no end date" for treatment.   And the doctors were quite thrilled to tell me that I could be on MK-3475 for the rest of my life.  So I will be very interested to see if my trial contract now changes again…and how it changes my treatment plan.   I will update you all when I hear.

                                                                              Much health and happiness to you all, Laurie

                                                                              • October 6, 2014 at 3:54 pm
                                                                              sweetaugust
                                                                              Participant

                                                                                Hi Brian!

                                                                                WOW…So excited for you!!!  Excellent news!  Love hearing it.  🙂

                                                                                I go in for treatment on Wednesday.  I will try and ask my doctors if my end date for the treatment (MK-3475) now changes due to the trial ending in August 2015.  They have not yet mentioned to me that August 2015 was the end date of the trial…so thank you for that bit of news.

                                                                                As of Oct 31, 2012, I was to be in the trial for 2 years.  Then as of last November 2013, I signed a new contract that states "no end date" for treatment.   And the doctors were quite thrilled to tell me that I could be on MK-3475 for the rest of my life.  So I will be very interested to see if my trial contract now changes again…and how it changes my treatment plan.   I will update you all when I hear.

                                                                                Much health and happiness to you all, Laurie

                                                                                  • October 6, 2014 at 8:36 pm
                                                                                  BrianP
                                                                                  Participant

                                                                                    Hey Laurie,

                                                                                    The August 2015 date is only the scheduled end to my trial.  That will be the scheduled two year point just like your trial was originally scheduled to last 2 years.  Sorry for the confusion.  I'm always curious what your doctors tell you because I really don't know what the recommendation for me is going to be at that time.  You and Celeste are the only ones I know of that have completed the two years.  Her case was little different since I think her's was an adjuvant treatment so it makes since that she would stop at the end of the trial.  I'm hoping over the course of the next year they'll be more reports on folks like you who have completed the two years and are either NED or stable.  Good luck Wednesday.  I'm going in for my next treatment on Wednesday also.

                                                                                    Brian

                                                                                    • October 6, 2014 at 11:18 pm
                                                                                    BrianP
                                                                                    Participant

                                                                                      That should be "sense" not "since"!

                                                                                      • October 6, 2014 at 11:18 pm
                                                                                      BrianP
                                                                                      Participant

                                                                                        That should be "sense" not "since"!

                                                                                        • October 6, 2014 at 11:18 pm
                                                                                        BrianP
                                                                                        Participant

                                                                                          That should be "sense" not "since"!

                                                                                          • October 7, 2014 at 2:19 pm
                                                                                          sweetaugust
                                                                                          Participant

                                                                                            Hi Brian,

                                                                                            I had just figured that since Pembro had been approved by the FDA, that maybe something changed, and it was now stated somewhere that the trial now had an end date.  I will still ask the doctors what their plan is, and has that changed now that the drug is approved.

                                                                                            Good luck at treatment tomorrow.   🙂  Laurie

                                                                                            • October 7, 2014 at 2:19 pm
                                                                                            sweetaugust
                                                                                            Participant

                                                                                              Hi Brian,

                                                                                              I had just figured that since Pembro had been approved by the FDA, that maybe something changed, and it was now stated somewhere that the trial now had an end date.  I will still ask the doctors what their plan is, and has that changed now that the drug is approved.

                                                                                              Good luck at treatment tomorrow.   🙂  Laurie

                                                                                              • October 7, 2014 at 2:19 pm
                                                                                              sweetaugust
                                                                                              Participant

                                                                                                Hi Brian,

                                                                                                I had just figured that since Pembro had been approved by the FDA, that maybe something changed, and it was now stated somewhere that the trial now had an end date.  I will still ask the doctors what their plan is, and has that changed now that the drug is approved.

                                                                                                Good luck at treatment tomorrow.   🙂  Laurie

                                                                                                • October 6, 2014 at 8:36 pm
                                                                                                BrianP
                                                                                                Participant

                                                                                                  Hey Laurie,

                                                                                                  The August 2015 date is only the scheduled end to my trial.  That will be the scheduled two year point just like your trial was originally scheduled to last 2 years.  Sorry for the confusion.  I'm always curious what your doctors tell you because I really don't know what the recommendation for me is going to be at that time.  You and Celeste are the only ones I know of that have completed the two years.  Her case was little different since I think her's was an adjuvant treatment so it makes since that she would stop at the end of the trial.  I'm hoping over the course of the next year they'll be more reports on folks like you who have completed the two years and are either NED or stable.  Good luck Wednesday.  I'm going in for my next treatment on Wednesday also.

                                                                                                  Brian

                                                                                                  • October 6, 2014 at 8:36 pm
                                                                                                  BrianP
                                                                                                  Participant

                                                                                                    Hey Laurie,

                                                                                                    The August 2015 date is only the scheduled end to my trial.  That will be the scheduled two year point just like your trial was originally scheduled to last 2 years.  Sorry for the confusion.  I'm always curious what your doctors tell you because I really don't know what the recommendation for me is going to be at that time.  You and Celeste are the only ones I know of that have completed the two years.  Her case was little different since I think her's was an adjuvant treatment so it makes since that she would stop at the end of the trial.  I'm hoping over the course of the next year they'll be more reports on folks like you who have completed the two years and are either NED or stable.  Good luck Wednesday.  I'm going in for my next treatment on Wednesday also.

                                                                                                    Brian

                                                                                                  • October 6, 2014 at 11:00 pm
                                                                                                  DZnDef
                                                                                                  Participant

                                                                                                    Woo Hoo!!  Congratulations Brian!  Fantastic news!  I am so very happy for you.  I hope it just keeps getting better and better for you from this point out.  Next time:  "Grossly smaller" mets.  Followed by "Grossly missing" mets…

                                                                                                    Cheers – Maggie

                                                                                                      • October 8, 2014 at 1:43 am
                                                                                                      Maureen038
                                                                                                      Participant

                                                                                                        Brian,

                                                                                                            I am so happy for you and your family!! That's such wonderful news. I hope Maggie is right about next time. Bill has scans on Friday and we are praying for good results too.

                                                                                                        Take care,

                                                                                                        Maureen

                                                                                                        • October 8, 2014 at 1:43 am
                                                                                                        Maureen038
                                                                                                        Participant

                                                                                                          Brian,

                                                                                                              I am so happy for you and your family!! That's such wonderful news. I hope Maggie is right about next time. Bill has scans on Friday and we are praying for good results too.

                                                                                                          Take care,

                                                                                                          Maureen

                                                                                                          • October 8, 2014 at 1:43 am
                                                                                                          Maureen038
                                                                                                          Participant

                                                                                                            Brian,

                                                                                                                I am so happy for you and your family!! That's such wonderful news. I hope Maggie is right about next time. Bill has scans on Friday and we are praying for good results too.

                                                                                                            Take care,

                                                                                                            Maureen

                                                                                                          • October 6, 2014 at 11:00 pm
                                                                                                          DZnDef
                                                                                                          Participant

                                                                                                            Woo Hoo!!  Congratulations Brian!  Fantastic news!  I am so very happy for you.  I hope it just keeps getting better and better for you from this point out.  Next time:  "Grossly smaller" mets.  Followed by "Grossly missing" mets…

                                                                                                            Cheers – Maggie

                                                                                                            • October 6, 2014 at 11:00 pm
                                                                                                            DZnDef
                                                                                                            Participant

                                                                                                              Woo Hoo!!  Congratulations Brian!  Fantastic news!  I am so very happy for you.  I hope it just keeps getting better and better for you from this point out.  Next time:  "Grossly smaller" mets.  Followed by "Grossly missing" mets…

                                                                                                              Cheers – Maggie

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