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Got CT results today

Forums General Melanoma Community Got CT results today

  • Post
    nancyg
    Participant
      My husband did ILl-2, 14 doses… Has tumors in
      Lymph nodes in chest and a mass on lung– went for
      His CT scan today-all of the tumors grew, but
      there are not any new ones anywhere else ..that they could see on the
      Scan…. Now waiting to see if he has NRAS mutation
      For a clinical trial… Also trying to get insurance to
      Approve Ipi… So disappointed and frustrated…does anyone
      Know the percentage of people that ipi helps??
      For IL-2 it was 20%
      Thank you so much,
      Nancy

      My husband did ILl-2, 14 doses… Has tumors in
      Lymph nodes in chest and a mass on lung– went for
      His CT scan today-all of the tumors grew, but
      there are not any new ones anywhere else ..that they could see on the
      Scan…. Now waiting to see if he has NRAS mutation
      For a clinical trial… Also trying to get insurance to
      Approve Ipi… So disappointed and frustrated…does anyone
      Know the percentage of people that ipi helps??
      For IL-2 it was 20%
      Thank you so much,
      Nancy

    Viewing 16 reply threads
    • Replies
        Tim–MRF
        Guest

          Nancy:

          The numbers generally accepted are that 4-5% of people have a complete response from IL-2 (all tumors go away) and another 10% or so get some benefit.  ipi is somewhat better, with response rates around 18%.  

          The term "response" actually has a technical definition; I believe it is 30% reduction in the largest diameter of a tumor mass.  Some people respond to these drugs but don't hit the definition of "response" per this criteria.

          Regarding insurance, if you have problems you can either call the company or use the MRF toll-free help line: 1-877-673-6460 .  We have trained social workers who can help deal with insurance issues.

          Another option, unless he has brain metastases, is to look for a clinical trial testing an anti-PD1 drug.  Two different companies are running trials now, and both drugs seem promising.  Early data show better response rates and fewer side effects.

          Tim–MRF

          Tim–MRF
          Guest

            Nancy:

            The numbers generally accepted are that 4-5% of people have a complete response from IL-2 (all tumors go away) and another 10% or so get some benefit.  ipi is somewhat better, with response rates around 18%.  

            The term "response" actually has a technical definition; I believe it is 30% reduction in the largest diameter of a tumor mass.  Some people respond to these drugs but don't hit the definition of "response" per this criteria.

            Regarding insurance, if you have problems you can either call the company or use the MRF toll-free help line: 1-877-673-6460 .  We have trained social workers who can help deal with insurance issues.

            Another option, unless he has brain metastases, is to look for a clinical trial testing an anti-PD1 drug.  Two different companies are running trials now, and both drugs seem promising.  Early data show better response rates and fewer side effects.

            Tim–MRF

            Tim–MRF
            Guest

              Nancy:

              The numbers generally accepted are that 4-5% of people have a complete response from IL-2 (all tumors go away) and another 10% or so get some benefit.  ipi is somewhat better, with response rates around 18%.  

              The term "response" actually has a technical definition; I believe it is 30% reduction in the largest diameter of a tumor mass.  Some people respond to these drugs but don't hit the definition of "response" per this criteria.

              Regarding insurance, if you have problems you can either call the company or use the MRF toll-free help line: 1-877-673-6460 .  We have trained social workers who can help deal with insurance issues.

              Another option, unless he has brain metastases, is to look for a clinical trial testing an anti-PD1 drug.  Two different companies are running trials now, and both drugs seem promising.  Early data show better response rates and fewer side effects.

              Tim–MRF

              nancyg
              Participant
                Thank you, Tim! I appreciate your response.
                Nancy
                nancyg
                Participant
                  Thank you, Tim! I appreciate your response.
                  Nancy
                  nancyg
                  Participant
                    Thank you, Tim! I appreciate your response.
                    Nancy
                    JerryfromFauq
                    Participant

                      Tim, Definitions can vary, especially in trials & also at what point in treatment.  For a fast growing tumor, I have seen the figure of less than a 25% growth used used as response enough to go ahead with the 2nd round (weeks 3 & 4) of IL-2 administration.  Less growth and no growth are considered as responding.  I was considered as a  responder when I went from no measurable tumors NED? in a Jan CT to innumerable tumors {some near 2 cm in 2 months time) and then, for 20 month I had essentially no growth and no new tumors.  (So wound up being a partial responder).    After my melanoma stopped responding to the IL-2 (20 Months later), I again developed  innumerable new additional tumors in my lungs [how many is innumerable old plus innumerable new tumors?].  Some of the 2 year old tumors quadrupled in size, and I developed new tumors in my groin and on my neck. The liver tumors never resumed growth after week3 of theIL-2.   In the 30 days after I talked my Onc into providing the non-FDA approved targeted chemo (for melanoma), all growth stopped again.  In the 4 1/2 years since then, none of my tumors have grown.  No new tumors have appeared.  A few of the smaller tumors cannot now be seen on CT nor PET scans. 

                      The 25% reduction has only recently been asked for as a hoped for target.  I have never had a large reduction in tumor size, BUT over 6 1/2 years after being told I would have major breathing problems within 30 days (Feb 2007) and could go anytime then, I still have innumerable lung tumors and still spent time bugging my growing number of Grand children and now Great  Grand children. As well as some older folks.

                      nancyg
                      Participant
                        Jerry, you have been through a lot… I appreciate
                        your insight and knowledge .
                        Wishing you all the best,
                        Nancy
                        nancyg
                        Participant
                          Oops! My husband wanted me to correct an error
                          He suffered through 16 doses of IL-2 not 14….I was proud
                          Of him always trying to get one more in…..
                          Nancy
                          nancyg
                          Participant
                            Oops! My husband wanted me to correct an error
                            He suffered through 16 doses of IL-2 not 14….I was proud
                            Of him always trying to get one more in…..
                            Nancy
                            nancyg
                            Participant
                              Oops! My husband wanted me to correct an error
                              He suffered through 16 doses of IL-2 not 14….I was proud
                              Of him always trying to get one more in…..
                              Nancy
                              nancyg
                              Participant
                                Jerry,
                                Thank you!!! Very helpful information….
                                Very much appreciated!
                                Wishing you well,
                                Nancy
                                JerryfromFauq
                                Participant

                                   Get the number correct!  He earned IT.  cheeky  So much FUn!   What's the definition of that word ?

                                  nancyg
                                  Participant
                                    Exactly!!!
                                    JerryfromFauq
                                    Participant

                                      Do you know how much (% wise) the tumors grew? 

                                      Remember the definitions : 

                                      progressive disease—at least a 20% increase.

                                      partial response—at least a 30% decrease.

                                      Anything between the two is "Essentially Stable".

                                      JerryfromFauq
                                      Participant

                                        Do you know how much (% wise) the tumors grew? 

                                        Remember the definitions : 

                                        progressive disease—at least a 20% increase.

                                        partial response—at least a 30% decrease.

                                        Anything between the two is "Essentially Stable".

                                        JerryfromFauq
                                        Participant

                                          Do you know how much (% wise) the tumors grew? 

                                          Remember the definitions : 

                                          progressive disease—at least a 20% increase.

                                          partial response—at least a 30% decrease.

                                          Anything between the two is "Essentially Stable".

                                          JerryfromFauq
                                          Participant

                                            Tim, Definitions can vary, especially in trials & also at what point in treatment.  For a fast growing tumor, I have seen the figure of less than a 25% growth used used as response enough to go ahead with the 2nd round (weeks 3 & 4) of IL-2 administration.  Less growth and no growth are considered as responding.  I was considered as a  responder when I went from no measurable tumors NED? in a Jan CT to innumerable tumors {some near 2 cm in 2 months time) and then, for 20 month I had essentially no growth and no new tumors.  (So wound up being a partial responder).    After my melanoma stopped responding to the IL-2 (20 Months later), I again developed  innumerable new additional tumors in my lungs [how many is innumerable old plus innumerable new tumors?].  Some of the 2 year old tumors quadrupled in size, and I developed new tumors in my groin and on my neck. The liver tumors never resumed growth after week3 of theIL-2.   In the 30 days after I talked my Onc into providing the non-FDA approved targeted chemo (for melanoma), all growth stopped again.  In the 4 1/2 years since then, none of my tumors have grown.  No new tumors have appeared.  A few of the smaller tumors cannot now be seen on CT nor PET scans. 

                                            The 25% reduction has only recently been asked for as a hoped for target.  I have never had a large reduction in tumor size, BUT over 6 1/2 years after being told I would have major breathing problems within 30 days (Feb 2007) and could go anytime then, I still have innumerable lung tumors and still spent time bugging my growing number of Grand children and now Great  Grand children. As well as some older folks.

                                            JerryfromFauq
                                            Participant

                                              Tim, Definitions can vary, especially in trials & also at what point in treatment.  For a fast growing tumor, I have seen the figure of less than a 25% growth used used as response enough to go ahead with the 2nd round (weeks 3 & 4) of IL-2 administration.  Less growth and no growth are considered as responding.  I was considered as a  responder when I went from no measurable tumors NED? in a Jan CT to innumerable tumors {some near 2 cm in 2 months time) and then, for 20 month I had essentially no growth and no new tumors.  (So wound up being a partial responder).    After my melanoma stopped responding to the IL-2 (20 Months later), I again developed  innumerable new additional tumors in my lungs [how many is innumerable old plus innumerable new tumors?].  Some of the 2 year old tumors quadrupled in size, and I developed new tumors in my groin and on my neck. The liver tumors never resumed growth after week3 of theIL-2.   In the 30 days after I talked my Onc into providing the non-FDA approved targeted chemo (for melanoma), all growth stopped again.  In the 4 1/2 years since then, none of my tumors have grown.  No new tumors have appeared.  A few of the smaller tumors cannot now be seen on CT nor PET scans. 

                                              The 25% reduction has only recently been asked for as a hoped for target.  I have never had a large reduction in tumor size, BUT over 6 1/2 years after being told I would have major breathing problems within 30 days (Feb 2007) and could go anytime then, I still have innumerable lung tumors and still spent time bugging my growing number of Grand children and now Great  Grand children. As well as some older folks.

                                              nancyg
                                              Participant
                                                Jerry, you have been through a lot… I appreciate
                                                your insight and knowledge .
                                                Wishing you all the best,
                                                Nancy
                                                nancyg
                                                Participant
                                                  Jerry, you have been through a lot… I appreciate
                                                  your insight and knowledge .
                                                  Wishing you all the best,
                                                  Nancy
                                                  JerryfromFauq
                                                  Participant

                                                    what is:     ;Response     ;Objective Tumor Response     ; Complete Response       ; Partial Response       ; Progressive Disease       ;Stable Disease (especially if previously rapidly progressing tumors)    ;Pathological response

                                                    and for what purpose is the term tumor response being used?

                                                    http://www.eortc.be/Services/Doc/RECIST.pdf

                                                    .2.1. Evaluation of target lesions.

                                                    This section provides the definitions of the criteria used to determine objective tumor response for target lesions. The criteria have been adapted from the original WHO Handbook (3), taking into account the measurement of the longest diameter only for all target lesions:
                                                    complete response—the disappearance of all target lesions;
                                                    partial response—at least a 30% decrease in the sum of the longestdiameter of target lesions, taking as reference the baseline sumlongest diameter;
                                                    progressive disease—at least a 20% increasein the sum of the longest diameter of target lesions, taking as reference the smallest sum longest diameter recorded since the
                                                    treatment started or the appearance of one or more new lesions;
                                                    stable disease—neither sufficient shrinkage to qualify for partialresponse nor sufficient increase to qualify for progressive disease, taking as reference the smallest sum longest diameter sincethe treatment started.
                                                     
                                                     

                                                    . A sum of the longest diameter for all target lesions will be calculated and reported as the baseline sum longest diameter. The baseline sum longest diameter will be used as the reference by which to characterize the objective tumor response.

                                                    Tumor response associated with the administration of anticancer agents can be evaluated for at least three important purposes that are conceptually distinct:

                                                    Tumor response as a prospective end point in early clinical trials. In this situation, objective tumor response is employed to determine whether the agent/regimen demonstrates sufficiently encouraging results to warrant further testing. These trials are typically phase II trials of investigational agents/regimens (see section 1.2), and it is for use in this precise context that these guidelines have been developed.

                                                    Tumor response as a prospective end point in more definitive clinical trials designed to provide an estimate of benefit for a specific cohort of patients. These trials are often randomized comparative trials or single-arm comparisons of combinations of agents with historical control subjects. In this setting, objective tumor response is used as a surrogate end point for other measures of clinical benefit, including time to event (death or disease progression) and symptom control (see section 1.3).

                                                    Tumor response as a guide for the clinician and patient or study subject in decisions about continuation of current therapy. This purpose is applicable both to clinical trials and to routine practice ( see section 1.1), but use in the context of decisions regarding continuation of therapy is not the primary focus of this document.

                                                    3.2.1. Evaluation of target lesions.

                                                    This section provides the definitions of the criteria used to determine objective tumor response for target lesions. The criteria have been adapted from the originalWHO Handbook (3), taking into account the measurement of the longest diameter only for all target lesions:
                                                    complete response—the disappearance of all target lesions;

                                                    partial response—at least a 30% decrease in the sum of the longestdiameter of target lesions, taking as reference the baseline sumlongest diameter;

                                                    progressive disease—at least a 20% increasein the sum of the longest diameter of target lesions, taking as reference the smallest sum longest diameter recorded since the treatment started or the appearance of one or more new lesions;

                                                    stable disease—neither sufficient shrinkage to qualify for partial response nor sufficient increase to qualify for progressive disease, taking as reference the smallest sum longest diameter since the treatment started.

                                                    JerryfromFauq
                                                    Participant

                                                      what is:     ;Response     ;Objective Tumor Response     ; Complete Response       ; Partial Response       ; Progressive Disease       ;Stable Disease (especially if previously rapidly progressing tumors)    ;Pathological response

                                                      and for what purpose is the term tumor response being used?

                                                      http://www.eortc.be/Services/Doc/RECIST.pdf

                                                      .2.1. Evaluation of target lesions.

                                                      This section provides the definitions of the criteria used to determine objective tumor response for target lesions. The criteria have been adapted from the original WHO Handbook (3), taking into account the measurement of the longest diameter only for all target lesions:
                                                      complete response—the disappearance of all target lesions;
                                                      partial response—at least a 30% decrease in the sum of the longestdiameter of target lesions, taking as reference the baseline sumlongest diameter;
                                                      progressive disease—at least a 20% increasein the sum of the longest diameter of target lesions, taking as reference the smallest sum longest diameter recorded since the
                                                      treatment started or the appearance of one or more new lesions;
                                                      stable disease—neither sufficient shrinkage to qualify for partialresponse nor sufficient increase to qualify for progressive disease, taking as reference the smallest sum longest diameter sincethe treatment started.
                                                       
                                                       

                                                      . A sum of the longest diameter for all target lesions will be calculated and reported as the baseline sum longest diameter. The baseline sum longest diameter will be used as the reference by which to characterize the objective tumor response.

                                                      Tumor response associated with the administration of anticancer agents can be evaluated for at least three important purposes that are conceptually distinct:

                                                      Tumor response as a prospective end point in early clinical trials. In this situation, objective tumor response is employed to determine whether the agent/regimen demonstrates sufficiently encouraging results to warrant further testing. These trials are typically phase II trials of investigational agents/regimens (see section 1.2), and it is for use in this precise context that these guidelines have been developed.

                                                      Tumor response as a prospective end point in more definitive clinical trials designed to provide an estimate of benefit for a specific cohort of patients. These trials are often randomized comparative trials or single-arm comparisons of combinations of agents with historical control subjects. In this setting, objective tumor response is used as a surrogate end point for other measures of clinical benefit, including time to event (death or disease progression) and symptom control (see section 1.3).

                                                      Tumor response as a guide for the clinician and patient or study subject in decisions about continuation of current therapy. This purpose is applicable both to clinical trials and to routine practice ( see section 1.1), but use in the context of decisions regarding continuation of therapy is not the primary focus of this document.

                                                      3.2.1. Evaluation of target lesions.

                                                      This section provides the definitions of the criteria used to determine objective tumor response for target lesions. The criteria have been adapted from the originalWHO Handbook (3), taking into account the measurement of the longest diameter only for all target lesions:
                                                      complete response—the disappearance of all target lesions;

                                                      partial response—at least a 30% decrease in the sum of the longestdiameter of target lesions, taking as reference the baseline sumlongest diameter;

                                                      progressive disease—at least a 20% increasein the sum of the longest diameter of target lesions, taking as reference the smallest sum longest diameter recorded since the treatment started or the appearance of one or more new lesions;

                                                      stable disease—neither sufficient shrinkage to qualify for partial response nor sufficient increase to qualify for progressive disease, taking as reference the smallest sum longest diameter since the treatment started.

                                                      JerryfromFauq
                                                      Participant

                                                        what is:     ;Response     ;Objective Tumor Response     ; Complete Response       ; Partial Response       ; Progressive Disease       ;Stable Disease (especially if previously rapidly progressing tumors)    ;Pathological response

                                                        and for what purpose is the term tumor response being used?

                                                        http://www.eortc.be/Services/Doc/RECIST.pdf

                                                        .2.1. Evaluation of target lesions.

                                                        This section provides the definitions of the criteria used to determine objective tumor response for target lesions. The criteria have been adapted from the original WHO Handbook (3), taking into account the measurement of the longest diameter only for all target lesions:
                                                        complete response—the disappearance of all target lesions;
                                                        partial response—at least a 30% decrease in the sum of the longestdiameter of target lesions, taking as reference the baseline sumlongest diameter;
                                                        progressive disease—at least a 20% increasein the sum of the longest diameter of target lesions, taking as reference the smallest sum longest diameter recorded since the
                                                        treatment started or the appearance of one or more new lesions;
                                                        stable disease—neither sufficient shrinkage to qualify for partialresponse nor sufficient increase to qualify for progressive disease, taking as reference the smallest sum longest diameter sincethe treatment started.
                                                         
                                                         

                                                        . A sum of the longest diameter for all target lesions will be calculated and reported as the baseline sum longest diameter. The baseline sum longest diameter will be used as the reference by which to characterize the objective tumor response.

                                                        Tumor response associated with the administration of anticancer agents can be evaluated for at least three important purposes that are conceptually distinct:

                                                        Tumor response as a prospective end point in early clinical trials. In this situation, objective tumor response is employed to determine whether the agent/regimen demonstrates sufficiently encouraging results to warrant further testing. These trials are typically phase II trials of investigational agents/regimens (see section 1.2), and it is for use in this precise context that these guidelines have been developed.

                                                        Tumor response as a prospective end point in more definitive clinical trials designed to provide an estimate of benefit for a specific cohort of patients. These trials are often randomized comparative trials or single-arm comparisons of combinations of agents with historical control subjects. In this setting, objective tumor response is used as a surrogate end point for other measures of clinical benefit, including time to event (death or disease progression) and symptom control (see section 1.3).

                                                        Tumor response as a guide for the clinician and patient or study subject in decisions about continuation of current therapy. This purpose is applicable both to clinical trials and to routine practice ( see section 1.1), but use in the context of decisions regarding continuation of therapy is not the primary focus of this document.

                                                        3.2.1. Evaluation of target lesions.

                                                        This section provides the definitions of the criteria used to determine objective tumor response for target lesions. The criteria have been adapted from the originalWHO Handbook (3), taking into account the measurement of the longest diameter only for all target lesions:
                                                        complete response—the disappearance of all target lesions;

                                                        partial response—at least a 30% decrease in the sum of the longestdiameter of target lesions, taking as reference the baseline sumlongest diameter;

                                                        progressive disease—at least a 20% increasein the sum of the longest diameter of target lesions, taking as reference the smallest sum longest diameter recorded since the treatment started or the appearance of one or more new lesions;

                                                        stable disease—neither sufficient shrinkage to qualify for partial response nor sufficient increase to qualify for progressive disease, taking as reference the smallest sum longest diameter since the treatment started.

                                                        nancyg
                                                        Participant
                                                          Jerry,
                                                          Thank you!!! Very helpful information….
                                                          Very much appreciated!
                                                          Wishing you well,
                                                          Nancy
                                                          nancyg
                                                          Participant
                                                            Jerry,
                                                            Thank you!!! Very helpful information….
                                                            Very much appreciated!
                                                            Wishing you well,
                                                            Nancy
                                                            JerryfromFauq
                                                            Participant

                                                               Get the number correct!  He earned IT.  cheeky  So much FUn!   What's the definition of that word ?

                                                              JerryfromFauq
                                                              Participant

                                                                 Get the number correct!  He earned IT.  cheeky  So much FUn!   What's the definition of that word ?

                                                                nancyg
                                                                Participant
                                                                  Exactly!!!
                                                                  nancyg
                                                                  Participant
                                                                    Exactly!!!
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