need help with data – how effective is adjuvant therapy for stage IIIB?
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need help with data – how effective is adjuvant therapy for stage IIIB?

› Forums › General Melanoma Community › need help with data – how effective is adjuvant therapy for stage IIIB?

  • Post
    • January 11, 2017 at 8:54 pm
    mitranaaseh
    Participant

    hello folks,need your help please with the next step of decision making. My husband has been diagnosed with stage IIIB nodular cutaneous melanoma, 2.9mm depth, mitotic rate 10, very focal ulceration. One sentinel node was found positive with sparse .1mm-.2mm malignant cells.   He tried to get PD1 via a clinical trial but didn't get the PD1 arm and was randomized to the IPI arm at 10mg.  we have tried to gather info on stage III choices.  we need help makign our next step decision please: therpay? what kind? wait and see? .

    1) IPI at 10mg seems very toxic with high % grade 3-4 immune type reactions.  one prominent melanoma oncologist is recommending 3mg based on toxicity. others are saying 3mg is not proven and to stick to 10.  is 10 mg IPI for stage III the way to go? or 3mg ?

    2) the data on efficacy of adjuvant threpay is confusing.  one graph showed 5 year survival for IPI 10mg only improves from 22% to 25% for people who got adjuvant therapy. is the 3% improvement worth the risk of toxic reactions?  does it delay the recurrance ?  by how much?

    3) given the info on his initial mole and micro met in his sentinel (detailed above), is he a good candidate for "wait and see"? or is his cancer too aggressive to wait? 

    4) what are the chances of finding an oncologist to go "off label" and provide PD1 for stage III even though it is still under trial?  PD1 seems to be more effective and less toxic.  but is it worth the money and time to chase PD1 outside of trials? how do we go about doing this?

    5) aside from PD1 and IPI, is there anything else, even off label, to consider for stage IIIb?

    6) are there any natural immune booster regiments which are backed by data?

    any help would be appreciated. if you are pointing us to any data, it would be great to get your interpretation alongside the data as the data can sometimes be confusing.  FYI, we are in northern california, SF bay area.

    thank you kindly

     

Viewing 23 reply threads
  • Replies
      • January 11, 2017 at 10:11 pm
      Janner
      Participant

      4.  Unlikely to find someone to prescribe PD1 off label especially as adjuvant therapy.  Off label is more used for critical cases (life/death) or for a treating different cancer from what the drug was approved for.  Given the fact that IPI is approved at 3mg for stage IV and 10mg for stage III, this is a place where some docs might be willing to go off label.  But I doubt it will happen for PD1 when there are approved and untried options available.

      • January 11, 2017 at 10:11 pm
      Janner
      Participant

      4.  Unlikely to find someone to prescribe PD1 off label especially as adjuvant therapy.  Off label is more used for critical cases (life/death) or for a treating different cancer from what the drug was approved for.  Given the fact that IPI is approved at 3mg for stage IV and 10mg for stage III, this is a place where some docs might be willing to go off label.  But I doubt it will happen for PD1 when there are approved and untried options available.

      • January 11, 2017 at 10:11 pm
      Janner
      Participant

      4.  Unlikely to find someone to prescribe PD1 off label especially as adjuvant therapy.  Off label is more used for critical cases (life/death) or for a treating different cancer from what the drug was approved for.  Given the fact that IPI is approved at 3mg for stage IV and 10mg for stage III, this is a place where some docs might be willing to go off label.  But I doubt it will happen for PD1 when there are approved and untried options available.

        • January 11, 2017 at 11:54 pm
        mitranaaseh
        Participant

        thank you very much for your input.

        • January 11, 2017 at 11:54 pm
        mitranaaseh
        Participant

        thank you very much for your input.

        • January 11, 2017 at 11:54 pm
        mitranaaseh
        Participant

        thank you very much for your input.

      • January 11, 2017 at 10:16 pm
      debwray
      Participant

      try this http://melanomainternational.org/2016/12/adjuvant-therapy-decisions/#.WHagIRuLS01

      I think it is pretty good at setting out the current position and outstanding trials etc for stage 3

      https://www.youtube.com/watch?v=2wmeyNjFKQw  pretty good on understanding your pathology report.

      https://www.youtube.com/watch?v=YfZt5JdJ9_c&t=2s worth a look too…

      Clinical trials – stage 3 – California – https://clinicaltrials.gov/ct2/show/NCT02506153?recr=Open&cond=melanoma&cntry1=NA%3AUS&state1=NA%3AUS%3ACA&age=1&phase=2&rank=6

      pembro v interferon/ipi – but might be same trial you were looking at ? bit confused as trial description says double blind- but you would know from timing of treatments the arm you were on ?

      Uk guidelines say test vit d status at diagnosis and manage if low.

      https://www.nice.org.uk/guidance/ng14

      Some research to say good microbiome- gut bacteria – helps immune function- could consider pre/probiotic supplements or healthier diet.https://www.sciencedaily.com/releases/2016/11/161107113012.htm

      ipi as adj for stage II report- http://www.esmo.org/Conferences/ESMO-2016-Congress/Press-Media/Ipilimumab-as-Adjuvant-Therapy-Improves-Overall-Survival-in-High-Risk-Stage-III-Melanoma

      http://www.nejm.org/doi/full/10.1056/NEJMoa1611299

      http://melanomainternational.org/2015/10/october-19-2015-melanoma-stage-iii-decisions/#.WHaqaRuLS00

       

      Think this is more than enough to try to absorb for now.   Remember even with high dose Ipi the toxicities are manageable and not everyone has high grade problems. You could ask your oncologist the risk of progression- but we are all individuals and some will fall the right side of the prediction- others will not..

      You may also be looking at a surgical removal of the other lymph nodes- but no conclusive evidence on benefit if micro mets in the sentinel node.

      Lots more info on Celeste's blog- use the search box. http://chaoticallypreciselifeloveandmelanoma.blogspot.co.uk/search?updated-min=2017-01-01T00:00:00-05:00&updated-max=2018-01-01T00:00:00-05:00&max-results=6

      I'm stage IV with liver mets – 2 doses in to ipi nivo combo but on steroids as liver inflammation per blood tests with possible endocrine side effects. Tried for pembro v placebo stage 3 trial but got placebo – wasstage IIIc as macro mets groin and pelvis- had surgical removal Christmas 2015- progressed stage IV Oct 2016.

      Agreed- if approved would go for PD1 first line stage 3.

      BTW do you know BRAF status ?

      Come back with any more queries. Navigating this nightmare is tough but feeling comfortable with your decisions was helpful for my state of mind…info is power ?

      Best wishes

      Deb

       

       

      • January 11, 2017 at 10:16 pm
      debwray
      Participant

      try this http://melanomainternational.org/2016/12/adjuvant-therapy-decisions/#.WHagIRuLS01

      I think it is pretty good at setting out the current position and outstanding trials etc for stage 3

      https://www.youtube.com/watch?v=2wmeyNjFKQw  pretty good on understanding your pathology report.

      https://www.youtube.com/watch?v=YfZt5JdJ9_c&t=2s worth a look too…

      Clinical trials – stage 3 – California – https://clinicaltrials.gov/ct2/show/NCT02506153?recr=Open&cond=melanoma&cntry1=NA%3AUS&state1=NA%3AUS%3ACA&age=1&phase=2&rank=6

      pembro v interferon/ipi – but might be same trial you were looking at ? bit confused as trial description says double blind- but you would know from timing of treatments the arm you were on ?

      Uk guidelines say test vit d status at diagnosis and manage if low.

      https://www.nice.org.uk/guidance/ng14

      Some research to say good microbiome- gut bacteria – helps immune function- could consider pre/probiotic supplements or healthier diet.https://www.sciencedaily.com/releases/2016/11/161107113012.htm

      ipi as adj for stage II report- http://www.esmo.org/Conferences/ESMO-2016-Congress/Press-Media/Ipilimumab-as-Adjuvant-Therapy-Improves-Overall-Survival-in-High-Risk-Stage-III-Melanoma

      http://www.nejm.org/doi/full/10.1056/NEJMoa1611299

      http://melanomainternational.org/2015/10/october-19-2015-melanoma-stage-iii-decisions/#.WHaqaRuLS00

       

      Think this is more than enough to try to absorb for now.   Remember even with high dose Ipi the toxicities are manageable and not everyone has high grade problems. You could ask your oncologist the risk of progression- but we are all individuals and some will fall the right side of the prediction- others will not..

      You may also be looking at a surgical removal of the other lymph nodes- but no conclusive evidence on benefit if micro mets in the sentinel node.

      Lots more info on Celeste's blog- use the search box. http://chaoticallypreciselifeloveandmelanoma.blogspot.co.uk/search?updated-min=2017-01-01T00:00:00-05:00&updated-max=2018-01-01T00:00:00-05:00&max-results=6

      I'm stage IV with liver mets – 2 doses in to ipi nivo combo but on steroids as liver inflammation per blood tests with possible endocrine side effects. Tried for pembro v placebo stage 3 trial but got placebo – wasstage IIIc as macro mets groin and pelvis- had surgical removal Christmas 2015- progressed stage IV Oct 2016.

      Agreed- if approved would go for PD1 first line stage 3.

      BTW do you know BRAF status ?

      Come back with any more queries. Navigating this nightmare is tough but feeling comfortable with your decisions was helpful for my state of mind…info is power ?

      Best wishes

      Deb

       

       

      • January 11, 2017 at 10:16 pm
      debwray
      Participant

      try this http://melanomainternational.org/2016/12/adjuvant-therapy-decisions/#.WHagIRuLS01

      I think it is pretty good at setting out the current position and outstanding trials etc for stage 3

      https://www.youtube.com/watch?v=2wmeyNjFKQw  pretty good on understanding your pathology report.

      https://www.youtube.com/watch?v=YfZt5JdJ9_c&t=2s worth a look too…

      Clinical trials – stage 3 – California – https://clinicaltrials.gov/ct2/show/NCT02506153?recr=Open&cond=melanoma&cntry1=NA%3AUS&state1=NA%3AUS%3ACA&age=1&phase=2&rank=6

      pembro v interferon/ipi – but might be same trial you were looking at ? bit confused as trial description says double blind- but you would know from timing of treatments the arm you were on ?

      Uk guidelines say test vit d status at diagnosis and manage if low.

      https://www.nice.org.uk/guidance/ng14

      Some research to say good microbiome- gut bacteria – helps immune function- could consider pre/probiotic supplements or healthier diet.https://www.sciencedaily.com/releases/2016/11/161107113012.htm

      ipi as adj for stage II report- http://www.esmo.org/Conferences/ESMO-2016-Congress/Press-Media/Ipilimumab-as-Adjuvant-Therapy-Improves-Overall-Survival-in-High-Risk-Stage-III-Melanoma

      http://www.nejm.org/doi/full/10.1056/NEJMoa1611299

      http://melanomainternational.org/2015/10/october-19-2015-melanoma-stage-iii-decisions/#.WHaqaRuLS00

       

      Think this is more than enough to try to absorb for now.   Remember even with high dose Ipi the toxicities are manageable and not everyone has high grade problems. You could ask your oncologist the risk of progression- but we are all individuals and some will fall the right side of the prediction- others will not..

      You may also be looking at a surgical removal of the other lymph nodes- but no conclusive evidence on benefit if micro mets in the sentinel node.

      Lots more info on Celeste's blog- use the search box. http://chaoticallypreciselifeloveandmelanoma.blogspot.co.uk/search?updated-min=2017-01-01T00:00:00-05:00&updated-max=2018-01-01T00:00:00-05:00&max-results=6

      I'm stage IV with liver mets – 2 doses in to ipi nivo combo but on steroids as liver inflammation per blood tests with possible endocrine side effects. Tried for pembro v placebo stage 3 trial but got placebo – wasstage IIIc as macro mets groin and pelvis- had surgical removal Christmas 2015- progressed stage IV Oct 2016.

      Agreed- if approved would go for PD1 first line stage 3.

      BTW do you know BRAF status ?

      Come back with any more queries. Navigating this nightmare is tough but feeling comfortable with your decisions was helpful for my state of mind…info is power ?

      Best wishes

      Deb

       

       

        • January 11, 2017 at 11:58 pm
        mitranaaseh
        Participant

        Deb, thank you so very much. We will review all the info and i will come back for any clarification.  FYI, BRAF was negative.

        all the best to you.

        • January 11, 2017 at 11:58 pm
        mitranaaseh
        Participant

        Deb, thank you so very much. We will review all the info and i will come back for any clarification.  FYI, BRAF was negative.

        all the best to you.

        • January 11, 2017 at 11:58 pm
        mitranaaseh
        Participant

        Deb, thank you so very much. We will review all the info and i will come back for any clarification.  FYI, BRAF was negative.

        all the best to you.

      • January 11, 2017 at 10:31 pm
      jennunicorn
      Participant

      Have you been to UCSF melanoma center and asked an oncologist there about options? There might be other trials available to try, not sure if you can quit one trial and go to another, but I'd ask. Of course we have no data about PD1 drugs in the adjuvant setting, so right now Ipi is all we have data wise. I did Ipi 10mg adjuvant, 3B as well when first diagnosed. I did not end up with any of the bad side effects on that dosage. So it's not  a given with it, just have to be aware that they are possible. If you can get 3mg Ipi, and can't get another trial (I wouldn't try getting PD1 drugs off label, pretty sure that's fairly impossible), then go for 3mg. 10mg is what was tested in trials, so yes that's what they have data about, but 3mg is what stage 4 folks are given, so it's not impossible to think that 3mg wouldn't work just as well as 10mg. Others on here at stage 3 have gone on Ipi at 3mg.

      I love UCSF and get so much great info from my oncologist, they know all the trials and all the new research since they are directly involved with them, so they can definitely answer all of these questions for you easily. I

      • January 11, 2017 at 10:31 pm
      jennunicorn
      Participant

      Have you been to UCSF melanoma center and asked an oncologist there about options? There might be other trials available to try, not sure if you can quit one trial and go to another, but I'd ask. Of course we have no data about PD1 drugs in the adjuvant setting, so right now Ipi is all we have data wise. I did Ipi 10mg adjuvant, 3B as well when first diagnosed. I did not end up with any of the bad side effects on that dosage. So it's not  a given with it, just have to be aware that they are possible. If you can get 3mg Ipi, and can't get another trial (I wouldn't try getting PD1 drugs off label, pretty sure that's fairly impossible), then go for 3mg. 10mg is what was tested in trials, so yes that's what they have data about, but 3mg is what stage 4 folks are given, so it's not impossible to think that 3mg wouldn't work just as well as 10mg. Others on here at stage 3 have gone on Ipi at 3mg.

      I love UCSF and get so much great info from my oncologist, they know all the trials and all the new research since they are directly involved with them, so they can definitely answer all of these questions for you easily. I

      • January 11, 2017 at 10:31 pm
      jennunicorn
      Participant

      Have you been to UCSF melanoma center and asked an oncologist there about options? There might be other trials available to try, not sure if you can quit one trial and go to another, but I'd ask. Of course we have no data about PD1 drugs in the adjuvant setting, so right now Ipi is all we have data wise. I did Ipi 10mg adjuvant, 3B as well when first diagnosed. I did not end up with any of the bad side effects on that dosage. So it's not  a given with it, just have to be aware that they are possible. If you can get 3mg Ipi, and can't get another trial (I wouldn't try getting PD1 drugs off label, pretty sure that's fairly impossible), then go for 3mg. 10mg is what was tested in trials, so yes that's what they have data about, but 3mg is what stage 4 folks are given, so it's not impossible to think that 3mg wouldn't work just as well as 10mg. Others on here at stage 3 have gone on Ipi at 3mg.

      I love UCSF and get so much great info from my oncologist, they know all the trials and all the new research since they are directly involved with them, so they can definitely answer all of these questions for you easily. I

        • January 12, 2017 at 12:00 am
        mitranaaseh
        Participant

        Jenn, thank you so much for your input.  do you see Daud at UCSF? or someone else?

        • January 12, 2017 at 12:19 am
        jennunicorn
        Participant

        I see Katy Tsai, but Daud and Algazi are the big names there, they all work closely together and are all deep in the research and knowledge. Do you go to UCSF?

        • January 12, 2017 at 4:08 pm
        mitranaaseh
        Participant

        thank you Jenn.  we have seen dr daud but since they don't have any trials for stage III, we went to Stanford to get into a trial.  Daud is the one who recommended 3mg vs the normal 10mg for stage III.

        take care

        • January 12, 2017 at 5:52 pm
        jennunicorn
        Participant

        That's great. There are definitely not as many trials for stage 3 as there are for stage 4, so finding them can be hard. When I was diagnosed I was interested in trial but none were open at the time. That's why I went for the Ipi at 10mg. 

        I would probably go back to Daud and get on the 3mg dosage. Even though I did so well at 10mg, I know there are so many others that had more of a rough time and didn't get all the infusions. If his mel were to recur (which is what happened with me) then Daud could consider him unresectable and he could have the whole list of drugs open to him such as PD1s. That's how I am on the Ipi/Nivo combo… my mel recurred back in September in my groin lymph node which is the same place as orignal SLNB, so instead of taking the lymph node out… since the chance of it floating around elsewhere is pretty high, my onc said she would call me unresectable and gave me a list of options to choose from. 

        Hoping all the best for you and your husband.

        • January 13, 2017 at 8:38 pm
        mitranaaseh
        Participant

        thank you Jenn,  I will keep the unresectable option in mind. we like Daud and will most likely go back to him for 3mg instead of staying in the trial for 10mg. the efficacy data on IPI for adjuvant is very confusing. different reports i believe choose different measures to compare so we see from 3% improvement (IPI for stage III vs Stage IV) to 10% improvement between IPI vs placebo and some report 28% improvement.  or it could be that some numbers are % improvement vs actual absolute improvement in % numbers ( if that makes any sense). we plan to sort through those again today.

        jenn, since you are local and have experience with UCSF, do you mind if i reach out to you diretcly? would you mind emailing me directly at mitranaaseh@gmail.com.  thanks so much.

         

        take care and all the best to you

        • January 13, 2017 at 9:28 pm
        jennunicorn
        Participant

        I agree the different data is confusing.

        Yes I will email you now so you have my personal email, you can contact me any time 🙂

        • January 13, 2017 at 9:40 pm
        ed williams
        Participant

        Hi Anon, I have a link to a video from ESMO 2016 where Dr. Alexander Eggermont presents the final Overall survival data from EORTC 18071. https://www.youtube.com/watch?v=NIeSOcVcRh4  I am not sure where you are in your study of the different checkpoint inhibitors so I have a second video from Dr. Jeffrey Weber giving an explaination of the history of the development of Ipi and Nivo. Best Wishes!!!Ed https://www.youtube.com/watch?v=ysbSCeqJpq0

        • January 13, 2017 at 9:40 pm
        ed williams
        Participant

        Hi Anon, I have a link to a video from ESMO 2016 where Dr. Alexander Eggermont presents the final Overall survival data from EORTC 18071. https://www.youtube.com/watch?v=NIeSOcVcRh4  I am not sure where you are in your study of the different checkpoint inhibitors so I have a second video from Dr. Jeffrey Weber giving an explaination of the history of the development of Ipi and Nivo. Best Wishes!!!Ed https://www.youtube.com/watch?v=ysbSCeqJpq0

        • January 13, 2017 at 9:40 pm
        ed williams
        Participant

        Hi Anon, I have a link to a video from ESMO 2016 where Dr. Alexander Eggermont presents the final Overall survival data from EORTC 18071. https://www.youtube.com/watch?v=NIeSOcVcRh4  I am not sure where you are in your study of the different checkpoint inhibitors so I have a second video from Dr. Jeffrey Weber giving an explaination of the history of the development of Ipi and Nivo. Best Wishes!!!Ed https://www.youtube.com/watch?v=ysbSCeqJpq0

        • January 13, 2017 at 9:28 pm
        jennunicorn
        Participant

        I agree the different data is confusing.

        Yes I will email you now so you have my personal email, you can contact me any time 🙂

        • January 13, 2017 at 9:28 pm
        jennunicorn
        Participant

        I agree the different data is confusing.

        Yes I will email you now so you have my personal email, you can contact me any time 🙂

        • January 13, 2017 at 8:38 pm
        mitranaaseh
        Participant

        thank you Jenn,  I will keep the unresectable option in mind. we like Daud and will most likely go back to him for 3mg instead of staying in the trial for 10mg. the efficacy data on IPI for adjuvant is very confusing. different reports i believe choose different measures to compare so we see from 3% improvement (IPI for stage III vs Stage IV) to 10% improvement between IPI vs placebo and some report 28% improvement.  or it could be that some numbers are % improvement vs actual absolute improvement in % numbers ( if that makes any sense). we plan to sort through those again today.

        jenn, since you are local and have experience with UCSF, do you mind if i reach out to you diretcly? would you mind emailing me directly at mitranaaseh@gmail.com.  thanks so much.

         

        take care and all the best to you

        • January 13, 2017 at 8:38 pm
        mitranaaseh
        Participant

        thank you Jenn,  I will keep the unresectable option in mind. we like Daud and will most likely go back to him for 3mg instead of staying in the trial for 10mg. the efficacy data on IPI for adjuvant is very confusing. different reports i believe choose different measures to compare so we see from 3% improvement (IPI for stage III vs Stage IV) to 10% improvement between IPI vs placebo and some report 28% improvement.  or it could be that some numbers are % improvement vs actual absolute improvement in % numbers ( if that makes any sense). we plan to sort through those again today.

        jenn, since you are local and have experience with UCSF, do you mind if i reach out to you diretcly? would you mind emailing me directly at mitranaaseh@gmail.com.  thanks so much.

         

        take care and all the best to you

        • January 12, 2017 at 5:52 pm
        jennunicorn
        Participant

        That's great. There are definitely not as many trials for stage 3 as there are for stage 4, so finding them can be hard. When I was diagnosed I was interested in trial but none were open at the time. That's why I went for the Ipi at 10mg. 

        I would probably go back to Daud and get on the 3mg dosage. Even though I did so well at 10mg, I know there are so many others that had more of a rough time and didn't get all the infusions. If his mel were to recur (which is what happened with me) then Daud could consider him unresectable and he could have the whole list of drugs open to him such as PD1s. That's how I am on the Ipi/Nivo combo… my mel recurred back in September in my groin lymph node which is the same place as orignal SLNB, so instead of taking the lymph node out… since the chance of it floating around elsewhere is pretty high, my onc said she would call me unresectable and gave me a list of options to choose from. 

        Hoping all the best for you and your husband.

        • January 12, 2017 at 5:52 pm
        jennunicorn
        Participant

        That's great. There are definitely not as many trials for stage 3 as there are for stage 4, so finding them can be hard. When I was diagnosed I was interested in trial but none were open at the time. That's why I went for the Ipi at 10mg. 

        I would probably go back to Daud and get on the 3mg dosage. Even though I did so well at 10mg, I know there are so many others that had more of a rough time and didn't get all the infusions. If his mel were to recur (which is what happened with me) then Daud could consider him unresectable and he could have the whole list of drugs open to him such as PD1s. That's how I am on the Ipi/Nivo combo… my mel recurred back in September in my groin lymph node which is the same place as orignal SLNB, so instead of taking the lymph node out… since the chance of it floating around elsewhere is pretty high, my onc said she would call me unresectable and gave me a list of options to choose from. 

        Hoping all the best for you and your husband.

        • January 12, 2017 at 4:08 pm
        mitranaaseh
        Participant

        thank you Jenn.  we have seen dr daud but since they don't have any trials for stage III, we went to Stanford to get into a trial.  Daud is the one who recommended 3mg vs the normal 10mg for stage III.

        take care

        • January 12, 2017 at 4:08 pm
        mitranaaseh
        Participant

        thank you Jenn.  we have seen dr daud but since they don't have any trials for stage III, we went to Stanford to get into a trial.  Daud is the one who recommended 3mg vs the normal 10mg for stage III.

        take care

        • January 12, 2017 at 12:19 am
        jennunicorn
        Participant

        I see Katy Tsai, but Daud and Algazi are the big names there, they all work closely together and are all deep in the research and knowledge. Do you go to UCSF?

        • January 12, 2017 at 12:19 am
        jennunicorn
        Participant

        I see Katy Tsai, but Daud and Algazi are the big names there, they all work closely together and are all deep in the research and knowledge. Do you go to UCSF?

        • January 12, 2017 at 3:38 am
        Polymath
        Participant

        I'll second the UCSF option.  I see Algazi there.  They are fantastic.

        Gary

        • January 12, 2017 at 4:10 pm
        mitranaaseh
        Participant

        thank you Gary 🙂

        • January 12, 2017 at 4:10 pm
        mitranaaseh
        Participant

        thank you Gary 🙂

        • January 12, 2017 at 4:10 pm
        mitranaaseh
        Participant

        thank you Gary 🙂

        • January 12, 2017 at 3:38 am
        Polymath
        Participant

        I'll second the UCSF option.  I see Algazi there.  They are fantastic.

        Gary

        • January 12, 2017 at 3:38 am
        Polymath
        Participant

        I'll second the UCSF option.  I see Algazi there.  They are fantastic.

        Gary

        • January 12, 2017 at 12:00 am
        mitranaaseh
        Participant

        Jenn, thank you so much for your input.  do you see Daud at UCSF? or someone else?

        • January 12, 2017 at 12:00 am
        mitranaaseh
        Participant

        Jenn, thank you so much for your input.  do you see Daud at UCSF? or someone else?

        • January 12, 2017 at 4:30 am
        chalroad5
        Participant

        I'll "third" UCSF, they have an excellent melanoma program. I see Dr. Daud and think he's fantastic.

        • January 12, 2017 at 4:30 am
        chalroad5
        Participant

        I'll "third" UCSF, they have an excellent melanoma program. I see Dr. Daud and think he's fantastic.

        • January 12, 2017 at 4:30 am
        chalroad5
        Participant

        I'll "third" UCSF, they have an excellent melanoma program. I see Dr. Daud and think he's fantastic.

      • January 11, 2017 at 11:42 pm
      Tina Henry
      Participant

      I was diagnosed Stage IIIb in September 2015.  Was all geared up to do the interferon and last minute the Ipi was approved for us stage III warriors and my onc changed treatment last minute…which I was happy about as I heard all the horro stories associated with the interferon (like having the flu for an entire year).  The 10 mg is for the first 4 doses which are administered one treatment every 21 days and then 3 mg quarterly for a year.  I was able to do the 4 big doses prior to having a side effect which was my body started to attack my pituitary gland and that in turn caused some other "gland" issues.  My doc considered all the options and discontinued treatment at that time as he "thoguht the known risks outweighted the unknown benefits' at that time.  I continue to get my CT scans and MRI's and body checks and so far all is well. 

      Best wishes

      • January 11, 2017 at 11:42 pm
      Tina Henry
      Participant

      I was diagnosed Stage IIIb in September 2015.  Was all geared up to do the interferon and last minute the Ipi was approved for us stage III warriors and my onc changed treatment last minute…which I was happy about as I heard all the horro stories associated with the interferon (like having the flu for an entire year).  The 10 mg is for the first 4 doses which are administered one treatment every 21 days and then 3 mg quarterly for a year.  I was able to do the 4 big doses prior to having a side effect which was my body started to attack my pituitary gland and that in turn caused some other "gland" issues.  My doc considered all the options and discontinued treatment at that time as he "thoguht the known risks outweighted the unknown benefits' at that time.  I continue to get my CT scans and MRI's and body checks and so far all is well. 

      Best wishes

      • January 11, 2017 at 11:42 pm
      Tina Henry
      Participant

      I was diagnosed Stage IIIb in September 2015.  Was all geared up to do the interferon and last minute the Ipi was approved for us stage III warriors and my onc changed treatment last minute…which I was happy about as I heard all the horro stories associated with the interferon (like having the flu for an entire year).  The 10 mg is for the first 4 doses which are administered one treatment every 21 days and then 3 mg quarterly for a year.  I was able to do the 4 big doses prior to having a side effect which was my body started to attack my pituitary gland and that in turn caused some other "gland" issues.  My doc considered all the options and discontinued treatment at that time as he "thoguht the known risks outweighted the unknown benefits' at that time.  I continue to get my CT scans and MRI's and body checks and so far all is well. 

      Best wishes

        • January 12, 2017 at 12:03 am
        mitranaaseh
        Participant

        Thank you very much Tina.  I think most people don't last beyond the 4 doses on IPI.  did you recover from the adverse effects?

        thanks and all the best to you

         

        • January 12, 2017 at 12:03 am
        mitranaaseh
        Participant

        Thank you very much Tina.  I think most people don't last beyond the 4 doses on IPI.  did you recover from the adverse effects?

        thanks and all the best to you

         

        • January 12, 2017 at 12:03 am
        mitranaaseh
        Participant

        Thank you very much Tina.  I think most people don't last beyond the 4 doses on IPI.  did you recover from the adverse effects?

        thanks and all the best to you

         

      • January 12, 2017 at 12:35 am
      Bubbles
      Participant

      If you put "adjuvant" in the upper left search bubble on my blog you will find a great deal of information.

      Here is a post from a recent melanoma conference in Boston, look through and note the study for Stage III folks using ipi and T-VEC:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/straight-outta-boston-latest-melanoma.html

      There is also this posted in October:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

      One additional link to follow…as the spam blocker blocks me for more than two…..

      • January 12, 2017 at 12:35 am
      Bubbles
      Participant

      If you put "adjuvant" in the upper left search bubble on my blog you will find a great deal of information.

      Here is a post from a recent melanoma conference in Boston, look through and note the study for Stage III folks using ipi and T-VEC:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/straight-outta-boston-latest-melanoma.html

      There is also this posted in October:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

      One additional link to follow…as the spam blocker blocks me for more than two…..

      • January 12, 2017 at 12:35 am
      Bubbles
      Participant

      If you put "adjuvant" in the upper left search bubble on my blog you will find a great deal of information.

      Here is a post from a recent melanoma conference in Boston, look through and note the study for Stage III folks using ipi and T-VEC:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/straight-outta-boston-latest-melanoma.html

      There is also this posted in October:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

      One additional link to follow…as the spam blocker blocks me for more than two…..

      • January 12, 2017 at 2:25 am
      stevenallenschwartz
      Participant

      I believe you will not be able to get a PD1 while classified as a stage 3. Unfortunately PD1's seem to be temporarily limited to us stage 4's.

      • January 12, 2017 at 2:25 am
      stevenallenschwartz
      Participant

      I believe you will not be able to get a PD1 while classified as a stage 3. Unfortunately PD1's seem to be temporarily limited to us stage 4's.

      • January 12, 2017 at 2:25 am
      stevenallenschwartz
      Participant

      I believe you will not be able to get a PD1 while classified as a stage 3. Unfortunately PD1's seem to be temporarily limited to us stage 4's.

      • January 12, 2017 at 4:25 am
      Mark_DC
      Participant

      I was in a similar situation and tried the same thing – unfortunately i did not get the pd1 but was put on the ipi arm. I only made one dose of ipi because of side effects (think my doctor was a little cautious but i woild have made 2 doses max before running into side effects). With luck that will work for your husband (and you) – good luck!

      in my case it did not work in that i had a local recurrence (hope this will not happen to you). But then the upside is that you might be given pd1 if the recurrence is unresectable. I had already had two surgeries and this kept coming back. So while i hope you wont be put in this position it is a possible fallback option. And a good reason for doing scans and watching carefully so that you can fight back quickly if there is a recurrence, and maybe fight back with pd1.

      i think your plan is a good one, although you might want to do ipi plus tvec if you can get into that trial (maybe late now since you are in a trial alrleady)

      good luck hope goes well Mark

        • January 12, 2017 at 4:15 pm
        mitranaaseh
        Participant

        thank you very much Mark.  Is IPI plus TVEC a stage III trial?   take care

        • January 13, 2017 at 12:37 am
        Bubbles
        Participant

        Yes, it is fully described in the first link I put up for you from the Boston Conference.  c

        • January 13, 2017 at 12:37 am
        Bubbles
        Participant

        Yes, it is fully described in the first link I put up for you from the Boston Conference.  c

        • January 13, 2017 at 12:37 am
        Bubbles
        Participant

        Yes, it is fully described in the first link I put up for you from the Boston Conference.  c

        • January 12, 2017 at 4:15 pm
        mitranaaseh
        Participant

        thank you very much Mark.  Is IPI plus TVEC a stage III trial?   take care

        • January 12, 2017 at 4:15 pm
        mitranaaseh
        Participant

        thank you very much Mark.  Is IPI plus TVEC a stage III trial?   take care

      • January 12, 2017 at 4:25 am
      Mark_DC
      Participant

      I was in a similar situation and tried the same thing – unfortunately i did not get the pd1 but was put on the ipi arm. I only made one dose of ipi because of side effects (think my doctor was a little cautious but i woild have made 2 doses max before running into side effects). With luck that will work for your husband (and you) – good luck!

      in my case it did not work in that i had a local recurrence (hope this will not happen to you). But then the upside is that you might be given pd1 if the recurrence is unresectable. I had already had two surgeries and this kept coming back. So while i hope you wont be put in this position it is a possible fallback option. And a good reason for doing scans and watching carefully so that you can fight back quickly if there is a recurrence, and maybe fight back with pd1.

      i think your plan is a good one, although you might want to do ipi plus tvec if you can get into that trial (maybe late now since you are in a trial alrleady)

      good luck hope goes well Mark

      • January 12, 2017 at 4:25 am
      Mark_DC
      Participant

      I was in a similar situation and tried the same thing – unfortunately i did not get the pd1 but was put on the ipi arm. I only made one dose of ipi because of side effects (think my doctor was a little cautious but i woild have made 2 doses max before running into side effects). With luck that will work for your husband (and you) – good luck!

      in my case it did not work in that i had a local recurrence (hope this will not happen to you). But then the upside is that you might be given pd1 if the recurrence is unresectable. I had already had two surgeries and this kept coming back. So while i hope you wont be put in this position it is a possible fallback option. And a good reason for doing scans and watching carefully so that you can fight back quickly if there is a recurrence, and maybe fight back with pd1.

      i think your plan is a good one, although you might want to do ipi plus tvec if you can get into that trial (maybe late now since you are in a trial alrleady)

      good luck hope goes well Mark

      • January 12, 2017 at 1:44 pm
      Hukill
      Participant

      In July I was diagnosed with 7 mets in my lungs with several around 2cm in size. I started the ipi/nivo combo with 3mg of ipi and 1mg of nivo for 4 doses. Then I went to just nivo for 4 doses and on 12/23 went back to the combo same dose amount. On 12/29 my scan results came back no new disease and "near complete resolution". For me the 3mg dose work with side effects I could deal with.

        • January 13, 2017 at 11:24 am
        debwray
        Participant

        I love hearing good reports from treatment. It helps keep that optimistic bit of me going…Congratulations and looking forward to hearing you are officially a member of the NED club . They are still doing dose ranging trials esp with the combo and looking a sequencing. one is comparing 1mg kg iipi to 3 mg kg combined with nivo . Justfound this one too at MD Anderson https://clinicaltrials.gov/ct2/show/NCT02714218?term=ipilimumab+nivolumab&cond=melanoma&rank=25

        they are  testing combo doses of  ipi at 1 or 3 mg kg but nivo in combination at 3, 1 or 6 mg /kg., 

        Best wishes

        Deb

        • January 13, 2017 at 11:24 am
        debwray
        Participant

        I love hearing good reports from treatment. It helps keep that optimistic bit of me going…Congratulations and looking forward to hearing you are officially a member of the NED club . They are still doing dose ranging trials esp with the combo and looking a sequencing. one is comparing 1mg kg iipi to 3 mg kg combined with nivo . Justfound this one too at MD Anderson https://clinicaltrials.gov/ct2/show/NCT02714218?term=ipilimumab+nivolumab&cond=melanoma&rank=25

        they are  testing combo doses of  ipi at 1 or 3 mg kg but nivo in combination at 3, 1 or 6 mg /kg., 

        Best wishes

        Deb

        • January 13, 2017 at 11:24 am
        debwray
        Participant

        I love hearing good reports from treatment. It helps keep that optimistic bit of me going…Congratulations and looking forward to hearing you are officially a member of the NED club . They are still doing dose ranging trials esp with the combo and looking a sequencing. one is comparing 1mg kg iipi to 3 mg kg combined with nivo . Justfound this one too at MD Anderson https://clinicaltrials.gov/ct2/show/NCT02714218?term=ipilimumab+nivolumab&cond=melanoma&rank=25

        they are  testing combo doses of  ipi at 1 or 3 mg kg but nivo in combination at 3, 1 or 6 mg /kg., 

        Best wishes

        Deb

      • January 12, 2017 at 1:44 pm
      Hukill
      Participant

      In July I was diagnosed with 7 mets in my lungs with several around 2cm in size. I started the ipi/nivo combo with 3mg of ipi and 1mg of nivo for 4 doses. Then I went to just nivo for 4 doses and on 12/23 went back to the combo same dose amount. On 12/29 my scan results came back no new disease and "near complete resolution". For me the 3mg dose work with side effects I could deal with.

      • January 12, 2017 at 1:44 pm
      Hukill
      Participant

      In July I was diagnosed with 7 mets in my lungs with several around 2cm in size. I started the ipi/nivo combo with 3mg of ipi and 1mg of nivo for 4 doses. Then I went to just nivo for 4 doses and on 12/23 went back to the combo same dose amount. On 12/29 my scan results came back no new disease and "near complete resolution". For me the 3mg dose work with side effects I could deal with.

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