IPI update

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  • Post
    • September 28, 2011 at 6:36 pm
    emilypen
    Participant

      Hi All,

      So today we found out the results of Jason's 12 week scans.

      Not good, the Dr. said most of his tumours have doubled in size. What is so confusing for us is that some of his sub q tumours have disapeared and others are flattening out and getting smaller. But he has at least

      Jason has already been on P13k/Mek inhibitors, Braf inhibitors, Dacarbazine and now IPI. He is not healthy enough to qualify for IL-2 therapy.

      Essentially we were given 3 choices;

      Hi All,

      So today we found out the results of Jason's 12 week scans.

      Not good, the Dr. said most of his tumours have doubled in size. What is so confusing for us is that some of his sub q tumours have disapeared and others are flattening out and getting smaller. But he has at least

      Jason has already been on P13k/Mek inhibitors, Braf inhibitors, Dacarbazine and now IPI. He is not healthy enough to qualify for IL-2 therapy.

      Essentially we were given 3 choices;

      1. Wait and see if he is a late responder to IPI scan again in 4 weeks and then in another 8 weeks after that.

      2. Start a combination chemo on Monday  ( Carboplatin & Paclitaxel) See how he does with side effects and response.

      3. stop treatment ( life expectancy less than 4 months)

      There is an Anti PD-1 trial possible coming availble in the next few months that if he's healthy enough he may qualify for.

      The Dr. said the chemo regimen would not effect the possible continuing effects of the IPI.

       

      I think our main objective is keep him alive with a  good standard of living at least until our baby is born in Febuary. More time than that would be a gift.

      Thoughts? Ideas?

       

      Something we may be missing?

       

      thanks,

      Em

       

       

       

       

    Viewing 11 reply threads
    • Replies
        • September 28, 2011 at 7:22 pm
        momof2kids
        Participant

          Sorry, I can't add any help on the other options, as I haven't been thru any (I'm currently on my 1st treatment : yervoy), but obviously, if you have a baby due in a few months, as much as they feel he may have a few months left without treatment, I personally would go with #1 or #2… or wait to see if anything else comes out that may help him meet your newborn.  I can't even imagine being in this situation you are in.

          I have 2 kids (Ages 2 & 6) that I would give the world for, and I will fight this cancer with everything I have to beat it/contain it, destroy it, etc to stay around for these guys an extra day.

           

          • September 28, 2011 at 7:22 pm
          momof2kids
          Participant

            Sorry, I can't add any help on the other options, as I haven't been thru any (I'm currently on my 1st treatment : yervoy), but obviously, if you have a baby due in a few months, as much as they feel he may have a few months left without treatment, I personally would go with #1 or #2… or wait to see if anything else comes out that may help him meet your newborn.  I can't even imagine being in this situation you are in.

            I have 2 kids (Ages 2 & 6) that I would give the world for, and I will fight this cancer with everything I have to beat it/contain it, destroy it, etc to stay around for these guys an extra day.

             

            • September 28, 2011 at 7:37 pm
            jim Breitfeller
            Participant

              Em,

              Is Jason well enough to travel? If so, there is a clinical trial NCT01352884 with Anti-PD-1 therapy.

              Contacts and Locations
               

              Please refer to this study by its ClinicalTrials.gov identifier: NCT01352884

              Contacts
              Contact: Margaret Fleming   clinicaltrials@amplimmune.com

              Locations

               

              United States, Michigan
              Karmanos Cancer Institute Recruiting
              Detroit, Michigan, United States, 48201
              Contact: Erica Brennan     313-576-9816     brennane@karmanos.org    
              Contact: Karen Forman     313-576-8096     formank@karmanos.org    
              Principal Investigator: Patricia LoRusso, DO            
              United States, North Carolina
              Carolina BioOncology Institute Recruiting
              Huntersville, North Carolina, United States, 28078
              Contact: Jahleen Byers     704-947-6599     jbyers@carolinabiooncology.org    
              Principal Investigator: John Powderly, MD            
              United States, Tennessee
              Sarah Cannon Research Institute Recruiting
              Nashville, Tennessee, United States, 37203
              Contact: Patient Referral Line     615-339-4214        
              Principal Investigator: Jeffrey Infante, MD

              Best regards

              Jimmy B

              • September 28, 2011 at 7:37 pm
              jim Breitfeller
              Participant

                Em,

                Is Jason well enough to travel? If so, there is a clinical trial NCT01352884 with Anti-PD-1 therapy.

                Contacts and Locations
                 

                Please refer to this study by its ClinicalTrials.gov identifier: NCT01352884

                Contacts
                Contact: Margaret Fleming   clinicaltrials@amplimmune.com

                Locations

                 

                United States, Michigan
                Karmanos Cancer Institute Recruiting
                Detroit, Michigan, United States, 48201
                Contact: Erica Brennan     313-576-9816     brennane@karmanos.org    
                Contact: Karen Forman     313-576-8096     formank@karmanos.org    
                Principal Investigator: Patricia LoRusso, DO            
                United States, North Carolina
                Carolina BioOncology Institute Recruiting
                Huntersville, North Carolina, United States, 28078
                Contact: Jahleen Byers     704-947-6599     jbyers@carolinabiooncology.org    
                Principal Investigator: John Powderly, MD            
                United States, Tennessee
                Sarah Cannon Research Institute Recruiting
                Nashville, Tennessee, United States, 37203
                Contact: Patient Referral Line     615-339-4214        
                Principal Investigator: Jeffrey Infante, MD

                Best regards

                Jimmy B

                  • September 29, 2011 at 3:35 pm
                  killmel
                  Participant

                    Hi Jimmy,

                    If a patient does NOT respond to IPI, why would the patient possiblly respond to anti-pd1 or anti-pdl-1.

                    I do not understand that if you take the breaks of your immune system with IPI, how is different than taking the breaks off with anti-pd1 or pdl-1?

                    Thanks for all you great info.

                    A.

                    • September 29, 2011 at 3:35 pm
                    killmel
                    Participant

                      Hi Jimmy,

                      If a patient does NOT respond to IPI, why would the patient possiblly respond to anti-pd1 or anti-pdl-1.

                      I do not understand that if you take the breaks of your immune system with IPI, how is different than taking the breaks off with anti-pd1 or pdl-1?

                      Thanks for all you great info.

                      A.

                      • September 29, 2011 at 4:38 pm
                      jim Breitfeller
                      Participant

                        A Great Question!!!!! 

                        Ipi works on the surface molecule CTLA-4 which are upregulated during T-cell activation. Most T-cells including the Tregs will have this receptor on their surface. When this receptor is engaged, the immune response is down-regulated.. terminated. So by blocking this receptor with Yervoy (Ipi), the checkpoint remains active.

                        Anti- PD-1 blocks another receptor called PD-1. It also is up-regulated on the T-cell. Now on the tumor cells, there are receptors called PD-L1. This PD-L1 receptor can bind/engage with PD-1 on the T-cells. When this happens, the immune rsponse is down-regulated and no response is generated.

                        T -cell and the tumor cell

                        So these two therapies block two different pathways that seem keep the checkpoint active. Most likely there are two checkpoints and blocking them both keep the immune response going.

                        Also, there are many other tumor-induced suppression.

                        I hope this answers your question.

                        Warm regards,

                        Jimmy B

                        • September 29, 2011 at 4:38 pm
                        jim Breitfeller
                        Participant

                          A Great Question!!!!! 

                          Ipi works on the surface molecule CTLA-4 which are upregulated during T-cell activation. Most T-cells including the Tregs will have this receptor on their surface. When this receptor is engaged, the immune response is down-regulated.. terminated. So by blocking this receptor with Yervoy (Ipi), the checkpoint remains active.

                          Anti- PD-1 blocks another receptor called PD-1. It also is up-regulated on the T-cell. Now on the tumor cells, there are receptors called PD-L1. This PD-L1 receptor can bind/engage with PD-1 on the T-cells. When this happens, the immune rsponse is down-regulated and no response is generated.

                          T -cell and the tumor cell

                          So these two therapies block two different pathways that seem keep the checkpoint active. Most likely there are two checkpoints and blocking them both keep the immune response going.

                          Also, there are many other tumor-induced suppression.

                          I hope this answers your question.

                          Warm regards,

                          Jimmy B

                        • September 28, 2011 at 7:51 pm
                        mombase
                        Participant

                          Dear Em,

                          I just looked at Jason's treatment history and it sounds like you two have been through so much. I hope that you are able to get into one of the trials that Jim has recommended to you. Best of luck and lots of prayers. He has to be able to be there for his new baby!

                          Cristy, Stage IV

                          • September 28, 2011 at 7:51 pm
                          mombase
                          Participant

                            Dear Em,

                            I just looked at Jason's treatment history and it sounds like you two have been through so much. I hope that you are able to get into one of the trials that Jim has recommended to you. Best of luck and lots of prayers. He has to be able to be there for his new baby!

                            Cristy, Stage IV

                            • September 28, 2011 at 9:08 pm
                            Lori C
                            Participant

                              What is his current performance status?  If he is still doing relatively okay,  I'd try either the chemo or the trial someone referenced.  I am sorry you are faced with this.

                              Will had very extensive liver mets – over 80% of his liver – but he did respond to the same chemo you mentioned.  Due to his very depleted condition at the time, though, it was too toxic.  If your husband is in somewhat better condition this might be a good option for time.

                              Lori

                              • September 28, 2011 at 9:08 pm
                              Lori C
                              Participant

                                What is his current performance status?  If he is still doing relatively okay,  I'd try either the chemo or the trial someone referenced.  I am sorry you are faced with this.

                                Will had very extensive liver mets – over 80% of his liver – but he did respond to the same chemo you mentioned.  Due to his very depleted condition at the time, though, it was too toxic.  If your husband is in somewhat better condition this might be a good option for time.

                                Lori

                                • September 29, 2011 at 7:33 am
                                FormerCaregiver
                                Participant

                                  Em, I am saddened to read this. It seems that the tumour burden is becoming the main problem now. Unfortunately, melanoma has a tendency to do unpredictable things, with some tumours getting smaller and others actively resisting the effects of treatment.

                                  I urge you not to limit the choices that might be available. Combination chemo is usually more toxic than single agent chemo, so one needs to keep this in mind. Jason could possibly try another type of single drug chemo, and one never knows if he might respond well to it.

                                  If an Anti PD-1 trial can be found quickly, then I think that would be a good thing to seriously consider. If Jason is ineligible for this, then perhaps another clinical trial of something else might be worth looking at.

                                  I don't want to alarm you, but I feel that time is of the essence and therefore definite plans are needed. Life expectancy is often impossible to predict, and some people can survive for many months or longer. However, it is also wise to be aware that others do not fare as well and their condition may deteriorate quiet suddenly.

                                  Take care

                                  Frank from Australia

                                  • September 29, 2011 at 7:33 am
                                  FormerCaregiver
                                  Participant

                                    Em, I am saddened to read this. It seems that the tumour burden is becoming the main problem now. Unfortunately, melanoma has a tendency to do unpredictable things, with some tumours getting smaller and others actively resisting the effects of treatment.

                                    I urge you not to limit the choices that might be available. Combination chemo is usually more toxic than single agent chemo, so one needs to keep this in mind. Jason could possibly try another type of single drug chemo, and one never knows if he might respond well to it.

                                    If an Anti PD-1 trial can be found quickly, then I think that would be a good thing to seriously consider. If Jason is ineligible for this, then perhaps another clinical trial of something else might be worth looking at.

                                    I don't want to alarm you, but I feel that time is of the essence and therefore definite plans are needed. Life expectancy is often impossible to predict, and some people can survive for many months or longer. However, it is also wise to be aware that others do not fare as well and their condition may deteriorate quiet suddenly.

                                    Take care

                                    Frank from Australia

                                      • September 29, 2011 at 2:26 pm
                                      Lisa13
                                      Participant

                                        Hi Emily,

                                        I'm really sorry to hear this news, but I'm not sure how Dr. Hogg can presume the ipi is not working after 12 week scans, when it seems to be the norm to scan again.

                                        On the Melanoma International website, there is a ipi webinar presented by Dr. Wolchuk (the guy who's been dealing with ipi since the beginning). He had a patient with liver mets who after 12 weeks looked worse then before. He had more tumours and when you looked at scans from previous, he looked worse. Dr. Wolchuk waited another 4 weeks to find that his patients tumours were shrinking and 4 years later, he is still in remission with no cancer. 

                                        This is a very tough decision, but if I were in your husbands situation, I would try and get into an Anti PD1 trial ASAP. Chemo also does work for some people and could very well work for your husband to alleviate some of his tumour burden (if the ipi isn't working).  While doing another treatment, he could have another scan in 4 weeks to see if the ipi has worked or not. This way, you are continuing with treatment, but hoping the ipi will kick in.

                                        I'm sending you prayers and good luck that your husband can get into a trial or that ipi works.  I know this situation seems dire, but please don't give up hop just yet.  Many things are possible.

                                        Lisa – Stage 4

                                        • September 29, 2011 at 2:26 pm
                                        Lisa13
                                        Participant

                                          Hi Emily,

                                          I'm really sorry to hear this news, but I'm not sure how Dr. Hogg can presume the ipi is not working after 12 week scans, when it seems to be the norm to scan again.

                                          On the Melanoma International website, there is a ipi webinar presented by Dr. Wolchuk (the guy who's been dealing with ipi since the beginning). He had a patient with liver mets who after 12 weeks looked worse then before. He had more tumours and when you looked at scans from previous, he looked worse. Dr. Wolchuk waited another 4 weeks to find that his patients tumours were shrinking and 4 years later, he is still in remission with no cancer. 

                                          This is a very tough decision, but if I were in your husbands situation, I would try and get into an Anti PD1 trial ASAP. Chemo also does work for some people and could very well work for your husband to alleviate some of his tumour burden (if the ipi isn't working).  While doing another treatment, he could have another scan in 4 weeks to see if the ipi has worked or not. This way, you are continuing with treatment, but hoping the ipi will kick in.

                                          I'm sending you prayers and good luck that your husband can get into a trial or that ipi works.  I know this situation seems dire, but please don't give up hop just yet.  Many things are possible.

                                          Lisa – Stage 4

                                        • September 30, 2011 at 12:42 pm
                                        Hereiam
                                        Participant

                                          Hi Em,

                                          I am verry sorry to hear such sad news, but I truly hope that you are strong and trying your best to stay positive.

                                          Of course, I cannot give any sure answers, and can just share my experience and opinion. My aunt was melanoma stage 3 patient and she did not respond to ipi either. Her oncologist adviced her to try virotherapy. And it was effective on her. My point is, if your goal is at least try to make the situation better not worse (cuz, as I understand, he is too weak to be able to use chemo) then I would suggest trying virotherapy. Well, my aunt become NED quite fast (I know your husband is in more serious situation) but the main thing was the fact, that her life-quality become so much more better! She did not suffer from depressions, nausea, fatigue or anything like that. 
                                          Maybe, if you really want to try a new option, you should consider this.

                                          Wishing you all the best and keeping your husband in my prayers!

                                          • September 30, 2011 at 12:42 pm
                                          Hereiam
                                          Participant

                                            Hi Em,

                                            I am verry sorry to hear such sad news, but I truly hope that you are strong and trying your best to stay positive.

                                            Of course, I cannot give any sure answers, and can just share my experience and opinion. My aunt was melanoma stage 3 patient and she did not respond to ipi either. Her oncologist adviced her to try virotherapy. And it was effective on her. My point is, if your goal is at least try to make the situation better not worse (cuz, as I understand, he is too weak to be able to use chemo) then I would suggest trying virotherapy. Well, my aunt become NED quite fast (I know your husband is in more serious situation) but the main thing was the fact, that her life-quality become so much more better! She did not suffer from depressions, nausea, fatigue or anything like that. 
                                            Maybe, if you really want to try a new option, you should consider this.

                                            Wishing you all the best and keeping your husband in my prayers!

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