“Required” Scans for Merck , BMS, GSK & other trials!

Forums General Melanoma Community “Required” Scans for Merck , BMS, GSK & other trials!

  • Post
    killmel
    Participant

      Hi All,

      I am new to the board. I feel very lucky I found you all.

      I am wondering what parts of the body are required to be scanned for clinical trials. Is it required for trials to scan from head to toe???

      I am in  Merck PD1 clinical trial and have scans every 12 weeks.  These are the scans I am getting: MRI Brain, CT Neck, Ct Chest, CT Abdomen & Pelvis, plus lower extremties because in the past, I had tumors in my left leg, lungs, and on chest. Recently, just became NED. 

      Hi All,

      I am new to the board. I feel very lucky I found you all.

      I am wondering what parts of the body are required to be scanned for clinical trials. Is it required for trials to scan from head to toe???

      I am in  Merck PD1 clinical trial and have scans every 12 weeks.  These are the scans I am getting: MRI Brain, CT Neck, Ct Chest, CT Abdomen & Pelvis, plus lower extremties because in the past, I had tumors in my left leg, lungs, and on chest. Recently, just became NED. 

      I would appreciate you sharing what trial/and or sponsor of the trial and what scans are you required to have??

      Thank so much for replying to my post.

      God Bless you all.

      Marybelle

    Viewing 8 reply threads
    • Replies
        rbruce
        Participant

          Marybelle, first of all, I have to ask, how did you become NED? Is it from the trial or did you havevsurgical resection?  I too am on the Merck Anti-Pd1 trial (see my earlier post).  i get the full head to toe pet/ct every 12 weeks. Haven't had a brain MRI since the start of my trial 24 weeks ago.  Robert 

            killmel
            Participant

              Hi Robert,

              Yes, I did become NED while on the trial. I had active tumors at the start of the trial. I predict  that you too will become NED on your next set of scans.

              What kind of side effects do you have? I lost my thyroid function plus joint/muscle pain and rash.

              We have about 20 patients on this trial. Only a few are not responding. How many patients are in your trial???Are any of them not responding???

              There are no more openings at our site for this trial??? Any seats at  UCSF? My friend is trying to get into this trial.

              Best wishes to you.

              Marybelle

              rbruce
              Participant

                Marybelle,

                What kind of tumors did you have when you started, ie. locations?  I sm so excited for you and all of us that are responding to this therapy.  My side effects have been an upper chest rash, muscle, joint and bone aches and pains and fatigue.  But, like I've said in other posts, since I did biochemo first, everything else has been a cakewalk.  We started with 4 in our UCSF trial and they added 3 who had already done Yervoy. I do not believe there are any open seats as I was told a "clinic in Southern California took too many seats".   2 participants are out as having 0 response and am being told that I have had the best response of the group so far at UCSF.  I attribute that to the fact that my tumors must have expressed the PD ligand.  BMS's trial shows 29 to 41% response when pd ligand is expressed and 0% when not.  This is our BRAF moment cuz up until now BRAF negatives had nothing showing a good response.  Yervoy is marginal at best, and the side effects quite daunting but it's all we had until this discovery.  

                Thanks for the encouraging words for my next scans at 36 weeks. For the first time in a year and a half I BELIEVE that I am going to beat this monster.  

                Robert

                rbruce
                Participant

                  Marybelle,

                  What kind of tumors did you have when you started, ie. locations?  I sm so excited for you and all of us that are responding to this therapy.  My side effects have been an upper chest rash, muscle, joint and bone aches and pains and fatigue.  But, like I've said in other posts, since I did biochemo first, everything else has been a cakewalk.  We started with 4 in our UCSF trial and they added 3 who had already done Yervoy. I do not believe there are any open seats as I was told a "clinic in Southern California took too many seats".   2 participants are out as having 0 response and am being told that I have had the best response of the group so far at UCSF.  I attribute that to the fact that my tumors must have expressed the PD ligand.  BMS's trial shows 29 to 41% response when pd ligand is expressed and 0% when not.  This is our BRAF moment cuz up until now BRAF negatives had nothing showing a good response.  Yervoy is marginal at best, and the side effects quite daunting but it's all we had until this discovery.  

                  Thanks for the encouraging words for my next scans at 36 weeks. For the first time in a year and a half I BELIEVE that I am going to beat this monster.  

                  Robert

                  rbruce
                  Participant

                    Marybelle,

                    What kind of tumors did you have when you started, ie. locations?  I sm so excited for you and all of us that are responding to this therapy.  My side effects have been an upper chest rash, muscle, joint and bone aches and pains and fatigue.  But, like I've said in other posts, since I did biochemo first, everything else has been a cakewalk.  We started with 4 in our UCSF trial and they added 3 who had already done Yervoy. I do not believe there are any open seats as I was told a "clinic in Southern California took too many seats".   2 participants are out as having 0 response and am being told that I have had the best response of the group so far at UCSF.  I attribute that to the fact that my tumors must have expressed the PD ligand.  BMS's trial shows 29 to 41% response when pd ligand is expressed and 0% when not.  This is our BRAF moment cuz up until now BRAF negatives had nothing showing a good response.  Yervoy is marginal at best, and the side effects quite daunting but it's all we had until this discovery.  

                    Thanks for the encouraging words for my next scans at 36 weeks. For the first time in a year and a half I BELIEVE that I am going to beat this monster.  

                    Robert

                    killmel
                    Participant

                      Hi Robert,

                      Yes, I did become NED while on the trial. I had active tumors at the start of the trial. I predict  that you too will become NED on your next set of scans.

                      What kind of side effects do you have? I lost my thyroid function plus joint/muscle pain and rash.

                      We have about 20 patients on this trial. Only a few are not responding. How many patients are in your trial???Are any of them not responding???

                      There are no more openings at our site for this trial??? Any seats at  UCSF? My friend is trying to get into this trial.

                      Best wishes to you.

                      Marybelle

                      killmel
                      Participant

                        Hi Robert,

                        Yes, I did become NED while on the trial. I had active tumors at the start of the trial. I predict  that you too will become NED on your next set of scans.

                        What kind of side effects do you have? I lost my thyroid function plus joint/muscle pain and rash.

                        We have about 20 patients on this trial. Only a few are not responding. How many patients are in your trial???Are any of them not responding???

                        There are no more openings at our site for this trial??? Any seats at  UCSF? My friend is trying to get into this trial.

                        Best wishes to you.

                        Marybelle

                      rbruce
                      Participant

                        Marybelle, first of all, I have to ask, how did you become NED? Is it from the trial or did you havevsurgical resection?  I too am on the Merck Anti-Pd1 trial (see my earlier post).  i get the full head to toe pet/ct every 12 weeks. Haven't had a brain MRI since the start of my trial 24 weeks ago.  Robert 

                        rbruce
                        Participant

                          Marybelle, first of all, I have to ask, how did you become NED? Is it from the trial or did you havevsurgical resection?  I too am on the Merck Anti-Pd1 trial (see my earlier post).  i get the full head to toe pet/ct every 12 weeks. Haven't had a brain MRI since the start of my trial 24 weeks ago.  Robert 

                          LynnLuc
                          Participant

                            I am on BMS's Anti PD 1 @ Moffitt  and have been in the trial since Fall 2010.  Stage 4 and I have been NED for 2 years 5 months. I get a brain MRI every 3 months and a CT of Neck, chest, abdomen and pelvic every 3 months.

                              Gene_S
                              Participant

                                Lynn I have a question for you.  I don't understand how you have been on a trial for not quite 2 years (Fall 2010) but you have been NED for 2 years and 5 months.  Is this trial for NED patients?

                                Judy (loving wife of Gene)

                                Gene_S
                                Participant

                                  Lynn I have a question for you.  I don't understand how you have been on a trial for not quite 2 years (Fall 2010) but you have been NED for 2 years and 5 months.  Is this trial for NED patients?

                                  Judy (loving wife of Gene)

                                  Gene_S
                                  Participant

                                    Lynn I have a question for you.  I don't understand how you have been on a trial for not quite 2 years (Fall 2010) but you have been NED for 2 years and 5 months.  Is this trial for NED patients?

                                    Judy (loving wife of Gene)

                                    LynnLuc
                                    Participant

                                      I had surgery March 26, 2010 and then the trial I was suppose to get into in Seattle needed to confrim some things and finally said I couldn't do the trial because they needed measureable disease and froze down my cloned cells for perhaps future use.. I  then went to the NIH and they told me to come back in a couple months..I found my trial at Moffitt and started in late Aug/Sept.

                                      LynnLuc
                                      Participant

                                        PS  they started my trial for resected    "

                                        Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 (BMS-936558) and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IV Melanoma" http://cancer.gov/clinicaltrials/search/view?cdrid=682183&version=HealthProfessional&protocolsearchid=10185044#AlternateTitle_CDR0000682183

                                         and then brought out the sister trial for unresected…             

                                        Phase I Pilot Study of Peptide Vaccine Comprising gp100:209-217(210M), MART-1:26-35(27L), gp100:280-288(288V), and NY-ESO-1 Emulsified in Montanide ISA 51 VG and Anti-PD-1 Human Monoclonal Antibody MDX-1106 in Patients With Unresectable Stage III or IV Melanoma  http://cancer.gov/clinicaltrials/search/view?cdrid=682171&version=HealthProfessional&protocolsearchid=10185044#AlternateTitle_CDR0000682171

                                        LynnLuc
                                        Participant

                                          I went to Moffitt In Aug for assessments and work ups and had my first Anti PD 1 on Sept 28, 2010….this week is my 101st week in the trial!

                                          Gene_S
                                          Participant

                                            Hello Lynn,

                                            Thank you for the information.  Glad it is working for you to keep you NED.

                                            Judy (loving wife of Gene)

                                            Gene_S
                                            Participant

                                              Hello Lynn,

                                              Thank you for the information.  Glad it is working for you to keep you NED.

                                              Judy (loving wife of Gene)

                                              Gene_S
                                              Participant

                                                Hello Lynn,

                                                Thank you for the information.  Glad it is working for you to keep you NED.

                                                Judy (loving wife of Gene)

                                                LynnLuc
                                                Participant

                                                  I went to Moffitt In Aug for assessments and work ups and had my first Anti PD 1 on Sept 28, 2010….this week is my 101st week in the trial!

                                                  LynnLuc
                                                  Participant

                                                    I went to Moffitt In Aug for assessments and work ups and had my first Anti PD 1 on Sept 28, 2010….this week is my 101st week in the trial!

                                                    LynnLuc
                                                    Participant

                                                      PS  they started my trial for resected    "

                                                      Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 (BMS-936558) and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IV Melanoma" http://cancer.gov/clinicaltrials/search/view?cdrid=682183&version=HealthProfessional&protocolsearchid=10185044#AlternateTitle_CDR0000682183

                                                       and then brought out the sister trial for unresected…             

                                                      Phase I Pilot Study of Peptide Vaccine Comprising gp100:209-217(210M), MART-1:26-35(27L), gp100:280-288(288V), and NY-ESO-1 Emulsified in Montanide ISA 51 VG and Anti-PD-1 Human Monoclonal Antibody MDX-1106 in Patients With Unresectable Stage III or IV Melanoma  http://cancer.gov/clinicaltrials/search/view?cdrid=682171&version=HealthProfessional&protocolsearchid=10185044#AlternateTitle_CDR0000682171

                                                      LynnLuc
                                                      Participant

                                                        PS  they started my trial for resected    "

                                                        Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 (BMS-936558) and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IV Melanoma" http://cancer.gov/clinicaltrials/search/view?cdrid=682183&version=HealthProfessional&protocolsearchid=10185044#AlternateTitle_CDR0000682183

                                                         and then brought out the sister trial for unresected…             

                                                        Phase I Pilot Study of Peptide Vaccine Comprising gp100:209-217(210M), MART-1:26-35(27L), gp100:280-288(288V), and NY-ESO-1 Emulsified in Montanide ISA 51 VG and Anti-PD-1 Human Monoclonal Antibody MDX-1106 in Patients With Unresectable Stage III or IV Melanoma  http://cancer.gov/clinicaltrials/search/view?cdrid=682171&version=HealthProfessional&protocolsearchid=10185044#AlternateTitle_CDR0000682171

                                                        LynnLuc
                                                        Participant

                                                          I had surgery March 26, 2010 and then the trial I was suppose to get into in Seattle needed to confrim some things and finally said I couldn't do the trial because they needed measureable disease and froze down my cloned cells for perhaps future use.. I  then went to the NIH and they told me to come back in a couple months..I found my trial at Moffitt and started in late Aug/Sept.

                                                          LynnLuc
                                                          Participant

                                                            I had surgery March 26, 2010 and then the trial I was suppose to get into in Seattle needed to confrim some things and finally said I couldn't do the trial because they needed measureable disease and froze down my cloned cells for perhaps future use.. I  then went to the NIH and they told me to come back in a couple months..I found my trial at Moffitt and started in late Aug/Sept.

                                                          LynnLuc
                                                          Participant

                                                            I am on BMS's Anti PD 1 @ Moffitt  and have been in the trial since Fall 2010.  Stage 4 and I have been NED for 2 years 5 months. I get a brain MRI every 3 months and a CT of Neck, chest, abdomen and pelvic every 3 months.

                                                            LynnLuc
                                                            Participant

                                                              I am on BMS's Anti PD 1 @ Moffitt  and have been in the trial since Fall 2010.  Stage 4 and I have been NED for 2 years 5 months. I get a brain MRI every 3 months and a CT of Neck, chest, abdomen and pelvic every 3 months.

                                                              Harry in Fair Oaks
                                                              Participant

                                                                I'm on the GSK BRAF/MEK trial.  I do all the scans you mention, but on an 8-week schedule (except thet head MRI is only every other time – i.e. on 16-week schedule).

                                                                Best wishes,

                                                                Harry

                                                                  rbruce
                                                                  Participant

                                                                    Harry, Are you in Fair Oaks, California?  If so, I go by you every week on my way to SF.  Robert

                                                                    Harry in Fair Oaks
                                                                    Participant

                                                                      Hi Robert,

                                                                      You have to stop by for a beer soon!  I'm right off Hazel, on the cliff overlooking 50 and Lake Natoma – so you're passing within a mile or so of me.

                                                                      And I'm also 58, also have 3 kids (they're 27 – triplets).  But I've been married much longer than you – 31 years as of tomorrow.

                                                                      Let's get together soon.

                                                                      Best wishes,

                                                                      Harry

                                                                      Harry in Fair Oaks
                                                                      Participant

                                                                        Hi Robert,

                                                                        You have to stop by for a beer soon!  I'm right off Hazel, on the cliff overlooking 50 and Lake Natoma – so you're passing within a mile or so of me.

                                                                        And I'm also 58, also have 3 kids (they're 27 – triplets).  But I've been married much longer than you – 31 years as of tomorrow.

                                                                        Let's get together soon.

                                                                        Best wishes,

                                                                        Harry

                                                                        Harry in Fair Oaks
                                                                        Participant

                                                                          Hi Robert,

                                                                          You have to stop by for a beer soon!  I'm right off Hazel, on the cliff overlooking 50 and Lake Natoma – so you're passing within a mile or so of me.

                                                                          And I'm also 58, also have 3 kids (they're 27 – triplets).  But I've been married much longer than you – 31 years as of tomorrow.

                                                                          Let's get together soon.

                                                                          Best wishes,

                                                                          Harry

                                                                          rbruce
                                                                          Participant

                                                                            Harry, Are you in Fair Oaks, California?  If so, I go by you every week on my way to SF.  Robert

                                                                            rbruce
                                                                            Participant

                                                                              Harry, Are you in Fair Oaks, California?  If so, I go by you every week on my way to SF.  Robert

                                                                            Harry in Fair Oaks
                                                                            Participant

                                                                              I'm on the GSK BRAF/MEK trial.  I do all the scans you mention, but on an 8-week schedule (except thet head MRI is only every other time – i.e. on 16-week schedule).

                                                                              Best wishes,

                                                                              Harry

                                                                              Harry in Fair Oaks
                                                                              Participant

                                                                                I'm on the GSK BRAF/MEK trial.  I do all the scans you mention, but on an 8-week schedule (except thet head MRI is only every other time – i.e. on 16-week schedule).

                                                                                Best wishes,

                                                                                Harry

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