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  • Post
    Marianne quinn
    Participant

      My husband was in the 10 mg. Ipi arm of the ipe vs. interferon trial. He did very well with the induction phase- being careful with his diet and a rash that is pretty easily controlled with Benadryl and lotion. He was 3C.

      2 weeks after the induction phase, a CAT scan was done, then a PET.. It showed a 2 cm. nodule in the liver by his diaphgram.  We were devastated. A biopsy was done ( with difficulty) and it was positive.

      Stereostatic radiation or ablation was offered. A very confusing story, but  another CAT scan for placement for stereosstatic radiation was done  2 weeks  later. and all the radiologist said was "very small, a blush. We elected to go with ablation for a variety of reasons. We are wanting another CAT scan before surgery as the radiation oncologist could not give us a dimension on the lesion. I don't know why as the lesion on the CAT scan and the biopsy done with CAT scan was very easily seen. This is upsetting.

      My question is – has this happened to anyone? The oncologist says the ipi is obviously not working due to him being NED prior to entering the study .( December 31, 2013) I am not sure that is correct. We are seeomg  a general oncologist who we like very much but who admits she has little experience with ipi. I know that ipi can have a delayed reaction and can make a scan look horrible at first. The main concern seems ti be that he was NED prior to the study. He has been removed from the study.

      If this lesion has disappeared, he wants to get back in the study. Is that possible?

      Has anyone out there had good results with ablation?

      Has anyone gone from NED to Stage 4 while on ipi? What happened to you?

      I was so worried about the 10 mg ipi side effects etc. It never crossed my mind that a lesion would show up right after he reached therapeutic levels . This sucks.

      Any info will be greatly appreciated. We will probably ask for a consult with a melanoma specialist after the surgery. We would have asked for one earlier, but things were going so well there did not seem to be a need.

      Thanks.

    Viewing 11 reply threads
    • Replies
        BrianP
        Participant

          Marianne,

          I'm curious about the trial you are concerned about being removed from.  How many infusions was your husband scheduled for and how many has he received?  This new met makes your husband stage IV which means you don't need to be on a trial to get ipi anymore.  I think your idea about seeing a melanoma specialist is a good one.  You are absolutely correct about how ipi can work and it is still very possible that your husband is still a responder.  Where are you all located?

          Brian

          BrianP
          Participant

            Marianne,

            I'm curious about the trial you are concerned about being removed from.  How many infusions was your husband scheduled for and how many has he received?  This new met makes your husband stage IV which means you don't need to be on a trial to get ipi anymore.  I think your idea about seeing a melanoma specialist is a good one.  You are absolutely correct about how ipi can work and it is still very possible that your husband is still a responder.  Where are you all located?

            Brian

            BrianP
            Participant

              Marianne,

              I'm curious about the trial you are concerned about being removed from.  How many infusions was your husband scheduled for and how many has he received?  This new met makes your husband stage IV which means you don't need to be on a trial to get ipi anymore.  I think your idea about seeing a melanoma specialist is a good one.  You are absolutely correct about how ipi can work and it is still very possible that your husband is still a responder.  Where are you all located?

              Brian

              Bubbles
              Participant

                Hey Marriane,

                So sorry for everything. But, I think Brian is exactly right on all points!  Ipi does not work quickly.  Ipi is on the market for Stage IV patients.  And most definitely….see a melanoma specialist!  That can make all the difference.  Actually, there have been studies done on NED patients and they did very well.  It is just hard to get Pharma to fund those kinds of trials and insurance to pay for meds for patients who "do not have disease."  Immunotherapies work best with the lowest possible disease burden, so some docs think that treating NED patients is the best possible scenario.  So, I don't think you have to fear that that condition did your husband harm.

                Here are some articles (even though the last is a bit older, from when we were first learning about ipi and another is talking about brain mets…it still shows how ipi works) that address what seem to be the particular of your husband's condition…..

                Ipi and radiation…a good combo for melanoma mets…brain and otherwise!!!

                We've been hearing more and more about this!  Here are two new articles…

                Ipilimumab and radiation therapy for melanoma brain metastasis. 
                Silk, Bassetti, West, Tsien, Lao.  Cancer Med. 2013 December.

                Ipilimumab, an antibody that enhances T-cell activation, may augment immunogenicity of tumor cells that are injured by radiation therapy.  We hypothesized that patients with melanoma brain metastasis treated with both ipi and radiotherapy would have improved overall survival, and that the sequence of treatments may affect disease control in the brain.  We analyzed the clinical and radiographic records of melanoma patients with brain mets who were treated with whole brain radiation therapy or stereotactic radiosurgery between 2005 and 2012. …Several patients were identified, 33 of whom received ipi and 37 who did not.  The patients who received ipi had a…median survival of 18.3 months, compared with 5.3 months for patients who did not received ipi.  Ipi and stereotactic radiosurgery were each significant predictors of improved overall survival.  Four of 10 evaluable patients (40%) who received ipi prior to radiotherapy demonstrated a partial response to radiotherapy, compared with two of 22 evaluable patients (9.1%) who did not received ipi.  Ipi is associated with a significantly reduced risk of death in patients with melanoma brain mets who underwent radiotherapy, and this finding supports the need for mulimodality therapy to optimize patient outcomes.

                So…40% of patients with melanoma brain mets who had ipi then radiation showed a partial response.  While only 9% of patients treated only with radiotherapy (no ipi) showed the same response.  The numbers of patients in this review are small and wonky…but this effect is showing up more and more as talking points when the melanoma big dogs are interviewed and in the literature.

                Combined ipi and radiotherapy for metastatic melanoma.
                Menzel, Abendroth, Kashani-Sabet, Minor. Center for Melanoma Research and Treatment, California Pacific Medical Center, San Francisco

                The efficacy and toxicity of ipi when combined with radiotherapy (RT) is unclear, though an abscopal effect has recently been reported in multiple patients receiving ipi and subsequent RT. This is our retrospective experience…
                Methods:  Melanoma patients treated with ipi and subsequent RT…NON-cranial lesions were identified.  All patients had CT scans within 1 and 3 months of RT initiation and conclusion respectively….
                Results:  Ten patients with median age of 65 years received RT via a linear accelerator of CyberKnife…Median number of lesions irradiated lesions was 1 (range = 1-3).  Patients received ipi (3mg/kg, 3-4 doses every 6 months) for a median of 11.9 months pre-RT.  Eight patients had progressive disease, two had stable disease at RT initiation.  At a median follow-up of 12+ months, median progression free survival and overall survival have not been reached.  At last follow-up, 2 patients had complete responses, 4 had partial responses, 1 had stable disease, and 3 had progressive disease.  All irradiated lesions were controlled.  There was one death related to brain mets.  Among 5 patients evaluated for abscopal effect, 2 had progressive disease out of field, 1 had stable disease out of field, and 2 evidenced abscopal effect, with regression or clearance of non-irradiated lesions.
                CONCLUSIONS:  Combined ipi and RT is a treatment option in metastatic melanoma with apparently little additive toxicity when hypofractionated RT is employed.  The abscopal effect is an increasingly common phenomenon in observed patients treated with this regimen.

                So….Still small numbers….but better than ipi or radiation alone!!!  After getting ipi….8 patients had progressive disease and 2 had stable disease.  BUT…after getting RT, 12+ months out – 2 have had a complete response, 4 have had partial responses, 1 has stable disease, and 3 have progressive disease with one death.  Still better than the 8 with progressive disease after ipi alone!!!  Per my Bentie statistician that is a clinical benefit of 70%!!!!  Then there is the abscopal effect to consider, with, of the 5 patients evaluated for it, 2 demonstrating progressive disease out of the field of radiation, 1 with stable tumors out of the field, and 2 with a positive abscopal effect with tumors regressed or cleared in non-radiated areas!  I think we are still unclear if ipi followed by RT is best…or vice versa…or if it matters at all.  I know there are more studies looking at this ongoing.
                 

                Novel Treatments for Melanoma Brain Metastases
                Kenchappa, Tran, Rao, Smalley, Gibney, Sondak, and Forsyth. October 2013.  Cancer Control.

                …Patience…[in monitoring clinical benefit] is required when using immunotherapies.  Early in the course of treatment, lesions may grow and become symptomatic, which is a pattern seen in systemic melanoma lesions treated with ipi, even though significant clinical response will ultimately occur.  In general, we attempt to wait until the end of the induction phase of ipi before concluding the presence of progressive disease.
                      One retrospective review sought to answer whether combination therapy with CTLA-4 antibodies was effective. Control rates using SRS combined ipi were reported and favorable survival and response rates were seen.  In this context, SRS may synergistically work with ipi by lysing tumor cells and presenting a broader antigen repertoire to primed T cells…..”

                Article about ipi (April 2012)…

                Ipilimumab in advanced melanoma (via PubMed) by:  Farolfi, Ridolfi, Guidoboni, et al.

                "Ipilimumab, an anticytotoxic T lymphocyte-associated antigen-4 antibody…has shown promise. In this report, advanced melanoma patients receiving [ipi] were scored according to a novel immune-related response criteria (irRC) in an attempt to capture additional response patterns and to avoid premature treatment cessation.  Thirty-six heavily pretreated metastatic melanoma patients received [ipi] within 5 international trials at our institution [Morgagni-Pierantoni Hospital in Italy] from May 2006 to August 2008.  Disease progression was defined as an increase in tumor burden by at least 25% compared with the nadir, irrespective of any initial increase in baseline or the appearance of new lesions.  We report unusually long-lasting responses in patients treated with [ipi] 10mg/kg.  An overall response was observed in 6 of 30 patients (20%), a complete response in 3 (10%), and disease control in 11 (37%), which seemed to be of a long duration (median of 16 months; complete response 36+, 34+, and 41+ months)…..Interestingly, we found a correlation between the presence of a grade 3/4 immune-related adverse event and response, time to progression, and overall survival."

                Biggest news here….is trying to get a new evaluation system accepted since ipi works slowly and patients may demonstrate some "progression" and even new lesions initially, that diminish in time.  Meaning….docs and research institutions and those that fund such things…should not stop ipi because of that initial finding.  GIVE IT TIME!!!! 

                Hope that helps.  Wishing you both my best.  Celeste

                 

                 

                 

                Bubbles
                Participant

                  Hey Marriane,

                  So sorry for everything. But, I think Brian is exactly right on all points!  Ipi does not work quickly.  Ipi is on the market for Stage IV patients.  And most definitely….see a melanoma specialist!  That can make all the difference.  Actually, there have been studies done on NED patients and they did very well.  It is just hard to get Pharma to fund those kinds of trials and insurance to pay for meds for patients who "do not have disease."  Immunotherapies work best with the lowest possible disease burden, so some docs think that treating NED patients is the best possible scenario.  So, I don't think you have to fear that that condition did your husband harm.

                  Here are some articles (even though the last is a bit older, from when we were first learning about ipi and another is talking about brain mets…it still shows how ipi works) that address what seem to be the particular of your husband's condition…..

                  Ipi and radiation…a good combo for melanoma mets…brain and otherwise!!!

                  We've been hearing more and more about this!  Here are two new articles…

                  Ipilimumab and radiation therapy for melanoma brain metastasis. 
                  Silk, Bassetti, West, Tsien, Lao.  Cancer Med. 2013 December.

                  Ipilimumab, an antibody that enhances T-cell activation, may augment immunogenicity of tumor cells that are injured by radiation therapy.  We hypothesized that patients with melanoma brain metastasis treated with both ipi and radiotherapy would have improved overall survival, and that the sequence of treatments may affect disease control in the brain.  We analyzed the clinical and radiographic records of melanoma patients with brain mets who were treated with whole brain radiation therapy or stereotactic radiosurgery between 2005 and 2012. …Several patients were identified, 33 of whom received ipi and 37 who did not.  The patients who received ipi had a…median survival of 18.3 months, compared with 5.3 months for patients who did not received ipi.  Ipi and stereotactic radiosurgery were each significant predictors of improved overall survival.  Four of 10 evaluable patients (40%) who received ipi prior to radiotherapy demonstrated a partial response to radiotherapy, compared with two of 22 evaluable patients (9.1%) who did not received ipi.  Ipi is associated with a significantly reduced risk of death in patients with melanoma brain mets who underwent radiotherapy, and this finding supports the need for mulimodality therapy to optimize patient outcomes.

                  So…40% of patients with melanoma brain mets who had ipi then radiation showed a partial response.  While only 9% of patients treated only with radiotherapy (no ipi) showed the same response.  The numbers of patients in this review are small and wonky…but this effect is showing up more and more as talking points when the melanoma big dogs are interviewed and in the literature.

                  Combined ipi and radiotherapy for metastatic melanoma.
                  Menzel, Abendroth, Kashani-Sabet, Minor. Center for Melanoma Research and Treatment, California Pacific Medical Center, San Francisco

                  The efficacy and toxicity of ipi when combined with radiotherapy (RT) is unclear, though an abscopal effect has recently been reported in multiple patients receiving ipi and subsequent RT. This is our retrospective experience…
                  Methods:  Melanoma patients treated with ipi and subsequent RT…NON-cranial lesions were identified.  All patients had CT scans within 1 and 3 months of RT initiation and conclusion respectively….
                  Results:  Ten patients with median age of 65 years received RT via a linear accelerator of CyberKnife…Median number of lesions irradiated lesions was 1 (range = 1-3).  Patients received ipi (3mg/kg, 3-4 doses every 6 months) for a median of 11.9 months pre-RT.  Eight patients had progressive disease, two had stable disease at RT initiation.  At a median follow-up of 12+ months, median progression free survival and overall survival have not been reached.  At last follow-up, 2 patients had complete responses, 4 had partial responses, 1 had stable disease, and 3 had progressive disease.  All irradiated lesions were controlled.  There was one death related to brain mets.  Among 5 patients evaluated for abscopal effect, 2 had progressive disease out of field, 1 had stable disease out of field, and 2 evidenced abscopal effect, with regression or clearance of non-irradiated lesions.
                  CONCLUSIONS:  Combined ipi and RT is a treatment option in metastatic melanoma with apparently little additive toxicity when hypofractionated RT is employed.  The abscopal effect is an increasingly common phenomenon in observed patients treated with this regimen.

                  So….Still small numbers….but better than ipi or radiation alone!!!  After getting ipi….8 patients had progressive disease and 2 had stable disease.  BUT…after getting RT, 12+ months out – 2 have had a complete response, 4 have had partial responses, 1 has stable disease, and 3 have progressive disease with one death.  Still better than the 8 with progressive disease after ipi alone!!!  Per my Bentie statistician that is a clinical benefit of 70%!!!!  Then there is the abscopal effect to consider, with, of the 5 patients evaluated for it, 2 demonstrating progressive disease out of the field of radiation, 1 with stable tumors out of the field, and 2 with a positive abscopal effect with tumors regressed or cleared in non-radiated areas!  I think we are still unclear if ipi followed by RT is best…or vice versa…or if it matters at all.  I know there are more studies looking at this ongoing.
                   

                  Novel Treatments for Melanoma Brain Metastases
                  Kenchappa, Tran, Rao, Smalley, Gibney, Sondak, and Forsyth. October 2013.  Cancer Control.

                  …Patience…[in monitoring clinical benefit] is required when using immunotherapies.  Early in the course of treatment, lesions may grow and become symptomatic, which is a pattern seen in systemic melanoma lesions treated with ipi, even though significant clinical response will ultimately occur.  In general, we attempt to wait until the end of the induction phase of ipi before concluding the presence of progressive disease.
                        One retrospective review sought to answer whether combination therapy with CTLA-4 antibodies was effective. Control rates using SRS combined ipi were reported and favorable survival and response rates were seen.  In this context, SRS may synergistically work with ipi by lysing tumor cells and presenting a broader antigen repertoire to primed T cells…..”

                  Article about ipi (April 2012)…

                  Ipilimumab in advanced melanoma (via PubMed) by:  Farolfi, Ridolfi, Guidoboni, et al.

                  "Ipilimumab, an anticytotoxic T lymphocyte-associated antigen-4 antibody…has shown promise. In this report, advanced melanoma patients receiving [ipi] were scored according to a novel immune-related response criteria (irRC) in an attempt to capture additional response patterns and to avoid premature treatment cessation.  Thirty-six heavily pretreated metastatic melanoma patients received [ipi] within 5 international trials at our institution [Morgagni-Pierantoni Hospital in Italy] from May 2006 to August 2008.  Disease progression was defined as an increase in tumor burden by at least 25% compared with the nadir, irrespective of any initial increase in baseline or the appearance of new lesions.  We report unusually long-lasting responses in patients treated with [ipi] 10mg/kg.  An overall response was observed in 6 of 30 patients (20%), a complete response in 3 (10%), and disease control in 11 (37%), which seemed to be of a long duration (median of 16 months; complete response 36+, 34+, and 41+ months)…..Interestingly, we found a correlation between the presence of a grade 3/4 immune-related adverse event and response, time to progression, and overall survival."

                  Biggest news here….is trying to get a new evaluation system accepted since ipi works slowly and patients may demonstrate some "progression" and even new lesions initially, that diminish in time.  Meaning….docs and research institutions and those that fund such things…should not stop ipi because of that initial finding.  GIVE IT TIME!!!! 

                  Hope that helps.  Wishing you both my best.  Celeste

                   

                   

                   

                  Bubbles
                  Participant

                    Hey Marriane,

                    So sorry for everything. But, I think Brian is exactly right on all points!  Ipi does not work quickly.  Ipi is on the market for Stage IV patients.  And most definitely….see a melanoma specialist!  That can make all the difference.  Actually, there have been studies done on NED patients and they did very well.  It is just hard to get Pharma to fund those kinds of trials and insurance to pay for meds for patients who "do not have disease."  Immunotherapies work best with the lowest possible disease burden, so some docs think that treating NED patients is the best possible scenario.  So, I don't think you have to fear that that condition did your husband harm.

                    Here are some articles (even though the last is a bit older, from when we were first learning about ipi and another is talking about brain mets…it still shows how ipi works) that address what seem to be the particular of your husband's condition…..

                    Ipi and radiation…a good combo for melanoma mets…brain and otherwise!!!

                    We've been hearing more and more about this!  Here are two new articles…

                    Ipilimumab and radiation therapy for melanoma brain metastasis. 
                    Silk, Bassetti, West, Tsien, Lao.  Cancer Med. 2013 December.

                    Ipilimumab, an antibody that enhances T-cell activation, may augment immunogenicity of tumor cells that are injured by radiation therapy.  We hypothesized that patients with melanoma brain metastasis treated with both ipi and radiotherapy would have improved overall survival, and that the sequence of treatments may affect disease control in the brain.  We analyzed the clinical and radiographic records of melanoma patients with brain mets who were treated with whole brain radiation therapy or stereotactic radiosurgery between 2005 and 2012. …Several patients were identified, 33 of whom received ipi and 37 who did not.  The patients who received ipi had a…median survival of 18.3 months, compared with 5.3 months for patients who did not received ipi.  Ipi and stereotactic radiosurgery were each significant predictors of improved overall survival.  Four of 10 evaluable patients (40%) who received ipi prior to radiotherapy demonstrated a partial response to radiotherapy, compared with two of 22 evaluable patients (9.1%) who did not received ipi.  Ipi is associated with a significantly reduced risk of death in patients with melanoma brain mets who underwent radiotherapy, and this finding supports the need for mulimodality therapy to optimize patient outcomes.

                    So…40% of patients with melanoma brain mets who had ipi then radiation showed a partial response.  While only 9% of patients treated only with radiotherapy (no ipi) showed the same response.  The numbers of patients in this review are small and wonky…but this effect is showing up more and more as talking points when the melanoma big dogs are interviewed and in the literature.

                    Combined ipi and radiotherapy for metastatic melanoma.
                    Menzel, Abendroth, Kashani-Sabet, Minor. Center for Melanoma Research and Treatment, California Pacific Medical Center, San Francisco

                    The efficacy and toxicity of ipi when combined with radiotherapy (RT) is unclear, though an abscopal effect has recently been reported in multiple patients receiving ipi and subsequent RT. This is our retrospective experience…
                    Methods:  Melanoma patients treated with ipi and subsequent RT…NON-cranial lesions were identified.  All patients had CT scans within 1 and 3 months of RT initiation and conclusion respectively….
                    Results:  Ten patients with median age of 65 years received RT via a linear accelerator of CyberKnife…Median number of lesions irradiated lesions was 1 (range = 1-3).  Patients received ipi (3mg/kg, 3-4 doses every 6 months) for a median of 11.9 months pre-RT.  Eight patients had progressive disease, two had stable disease at RT initiation.  At a median follow-up of 12+ months, median progression free survival and overall survival have not been reached.  At last follow-up, 2 patients had complete responses, 4 had partial responses, 1 had stable disease, and 3 had progressive disease.  All irradiated lesions were controlled.  There was one death related to brain mets.  Among 5 patients evaluated for abscopal effect, 2 had progressive disease out of field, 1 had stable disease out of field, and 2 evidenced abscopal effect, with regression or clearance of non-irradiated lesions.
                    CONCLUSIONS:  Combined ipi and RT is a treatment option in metastatic melanoma with apparently little additive toxicity when hypofractionated RT is employed.  The abscopal effect is an increasingly common phenomenon in observed patients treated with this regimen.

                    So….Still small numbers….but better than ipi or radiation alone!!!  After getting ipi….8 patients had progressive disease and 2 had stable disease.  BUT…after getting RT, 12+ months out – 2 have had a complete response, 4 have had partial responses, 1 has stable disease, and 3 have progressive disease with one death.  Still better than the 8 with progressive disease after ipi alone!!!  Per my Bentie statistician that is a clinical benefit of 70%!!!!  Then there is the abscopal effect to consider, with, of the 5 patients evaluated for it, 2 demonstrating progressive disease out of the field of radiation, 1 with stable tumors out of the field, and 2 with a positive abscopal effect with tumors regressed or cleared in non-radiated areas!  I think we are still unclear if ipi followed by RT is best…or vice versa…or if it matters at all.  I know there are more studies looking at this ongoing.
                     

                    Novel Treatments for Melanoma Brain Metastases
                    Kenchappa, Tran, Rao, Smalley, Gibney, Sondak, and Forsyth. October 2013.  Cancer Control.

                    …Patience…[in monitoring clinical benefit] is required when using immunotherapies.  Early in the course of treatment, lesions may grow and become symptomatic, which is a pattern seen in systemic melanoma lesions treated with ipi, even though significant clinical response will ultimately occur.  In general, we attempt to wait until the end of the induction phase of ipi before concluding the presence of progressive disease.
                          One retrospective review sought to answer whether combination therapy with CTLA-4 antibodies was effective. Control rates using SRS combined ipi were reported and favorable survival and response rates were seen.  In this context, SRS may synergistically work with ipi by lysing tumor cells and presenting a broader antigen repertoire to primed T cells…..”

                    Article about ipi (April 2012)…

                    Ipilimumab in advanced melanoma (via PubMed) by:  Farolfi, Ridolfi, Guidoboni, et al.

                    "Ipilimumab, an anticytotoxic T lymphocyte-associated antigen-4 antibody…has shown promise. In this report, advanced melanoma patients receiving [ipi] were scored according to a novel immune-related response criteria (irRC) in an attempt to capture additional response patterns and to avoid premature treatment cessation.  Thirty-six heavily pretreated metastatic melanoma patients received [ipi] within 5 international trials at our institution [Morgagni-Pierantoni Hospital in Italy] from May 2006 to August 2008.  Disease progression was defined as an increase in tumor burden by at least 25% compared with the nadir, irrespective of any initial increase in baseline or the appearance of new lesions.  We report unusually long-lasting responses in patients treated with [ipi] 10mg/kg.  An overall response was observed in 6 of 30 patients (20%), a complete response in 3 (10%), and disease control in 11 (37%), which seemed to be of a long duration (median of 16 months; complete response 36+, 34+, and 41+ months)…..Interestingly, we found a correlation between the presence of a grade 3/4 immune-related adverse event and response, time to progression, and overall survival."

                    Biggest news here….is trying to get a new evaluation system accepted since ipi works slowly and patients may demonstrate some "progression" and even new lesions initially, that diminish in time.  Meaning….docs and research institutions and those that fund such things…should not stop ipi because of that initial finding.  GIVE IT TIME!!!! 

                    Hope that helps.  Wishing you both my best.  Celeste

                     

                     

                     

                    POW
                    Participant

                      Marianne, I agree that you would be wise to consult with a melanoma specialist before you make any treatment decisions– including ablation or radiation. The reason is that there are many more clinical trials available for Stage IV patients than for Stage III patients. However, most clinical trials require that the patient have at least one measurable tumor to be elegible for the trial (i.e., the researchers need at least one tumor so they can measure the response to treatment or lack thereof).

                      Since, as Brian said, ipi is FDA approved for Stage IV patients, you do not have to get back on that clinical trial in order to get ipi. So this might be a good time for you and your husband to meet with a melanoma specialist at a center that offers a number of clinical trials and discuss what your options are. You might decide to go ahead with the ablation or you might decide to try something else. 

                      If you tell us where you live, someone here can probably recommend a good melanoma specialist in your area. 

                      POW
                      Participant

                        Marianne, I agree that you would be wise to consult with a melanoma specialist before you make any treatment decisions– including ablation or radiation. The reason is that there are many more clinical trials available for Stage IV patients than for Stage III patients. However, most clinical trials require that the patient have at least one measurable tumor to be elegible for the trial (i.e., the researchers need at least one tumor so they can measure the response to treatment or lack thereof).

                        Since, as Brian said, ipi is FDA approved for Stage IV patients, you do not have to get back on that clinical trial in order to get ipi. So this might be a good time for you and your husband to meet with a melanoma specialist at a center that offers a number of clinical trials and discuss what your options are. You might decide to go ahead with the ablation or you might decide to try something else. 

                        If you tell us where you live, someone here can probably recommend a good melanoma specialist in your area. 

                        POW
                        Participant

                          Marianne, I agree that you would be wise to consult with a melanoma specialist before you make any treatment decisions– including ablation or radiation. The reason is that there are many more clinical trials available for Stage IV patients than for Stage III patients. However, most clinical trials require that the patient have at least one measurable tumor to be elegible for the trial (i.e., the researchers need at least one tumor so they can measure the response to treatment or lack thereof).

                          Since, as Brian said, ipi is FDA approved for Stage IV patients, you do not have to get back on that clinical trial in order to get ipi. So this might be a good time for you and your husband to meet with a melanoma specialist at a center that offers a number of clinical trials and discuss what your options are. You might decide to go ahead with the ablation or you might decide to try something else. 

                          If you tell us where you live, someone here can probably recommend a good melanoma specialist in your area. 

                            Marianne quinn
                            Participant

                              Thank you all. I think we will go with the ablation as we have confidence in the surgeons. Of course, we will insist on another CAT scan before surgery due to the stereo static radiation specialist not telling us the size of the lesion identified on the placement CAT for stereostatic radiation done last week. We rejected the stereostatic radiation for a variety of reasons although we realize ipi and radiation works well with brain mets.  . The whole experience was very disturbing.

                              We live in Northern California so will,probably ask to go to UCSF or to UCLA for a consult. Pray that the ipi is working and surgery can be avoided. 

                              Still wondering if anyone has had experience with ablation. 

                               

                              Marianne quinn
                              Participant

                                Thank you all. I think we will go with the ablation as we have confidence in the surgeons. Of course, we will insist on another CAT scan before surgery due to the stereo static radiation specialist not telling us the size of the lesion identified on the placement CAT for stereostatic radiation done last week. We rejected the stereostatic radiation for a variety of reasons although we realize ipi and radiation works well with brain mets.  . The whole experience was very disturbing.

                                We live in Northern California so will,probably ask to go to UCSF or to UCLA for a consult. Pray that the ipi is working and surgery can be avoided. 

                                Still wondering if anyone has had experience with ablation. 

                                 

                                Marianne quinn
                                Participant

                                  Thank you all. I think we will go with the ablation as we have confidence in the surgeons. Of course, we will insist on another CAT scan before surgery due to the stereo static radiation specialist not telling us the size of the lesion identified on the placement CAT for stereostatic radiation done last week. We rejected the stereostatic radiation for a variety of reasons although we realize ipi and radiation works well with brain mets.  . The whole experience was very disturbing.

                                  We live in Northern California so will,probably ask to go to UCSF or to UCLA for a consult. Pray that the ipi is working and surgery can be avoided. 

                                  Still wondering if anyone has had experience with ablation. 

                                   

                                katie1
                                Participant

                                  Hi Marianne, I totally understand your questions. He has had 4 doses of Ipi at 10mg/kg.  if he can get approval for additional Ipi (and I have no idea how likely that would  be) it would be at 3mg/kg outside of a trial. If he indeed has no evidence of a tumor on a new CT then I think pursuing the trial coordinators for approval to continue may be worthwhile. I agree that seeing a melanoma specialist is crucial and also having a physician very familiar with Ipi is critical.  

                                  Kate

                                   

                                  katie1
                                  Participant

                                    Hi Marianne, I totally understand your questions. He has had 4 doses of Ipi at 10mg/kg.  if he can get approval for additional Ipi (and I have no idea how likely that would  be) it would be at 3mg/kg outside of a trial. If he indeed has no evidence of a tumor on a new CT then I think pursuing the trial coordinators for approval to continue may be worthwhile. I agree that seeing a melanoma specialist is crucial and also having a physician very familiar with Ipi is critical.  

                                    Kate

                                     

                                    katie1
                                    Participant

                                      Hi Marianne, I totally understand your questions. He has had 4 doses of Ipi at 10mg/kg.  if he can get approval for additional Ipi (and I have no idea how likely that would  be) it would be at 3mg/kg outside of a trial. If he indeed has no evidence of a tumor on a new CT then I think pursuing the trial coordinators for approval to continue may be worthwhile. I agree that seeing a melanoma specialist is crucial and also having a physician very familiar with Ipi is critical.  

                                      Kate

                                       

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