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Jualonso UPDATE , fail BRAF
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Jualonso UPDATE , fail BRAF

› Forums › General Melanoma Community › Jualonso UPDATE , fail BRAF

  • Post
    • September 1, 2014 at 3:31 pm
    jualonso
    Participant

      Hi friends, 

      i would like to ask for an advice from you, now i have to take my first important decision, Today my PET/SCAN has revealed Progression on COMBO BRAF INH. then i have to go one step forwards.

      In this moment what i have available is Ipilimumab, because EAP of pembro is just after fail ipi.

      Other Option could be wait a little to see clinical trials i can do it, Im in Spain and nothing interesting is available at the moment.

      I have decided with my doc because just a new spot is in my lungs but other are still missing that we are going to continue with the braf inh, till i decide what to do next. I have low Tumor burden so far.

      I would really apreciate your advices

      Jualonso

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    • Replies
        • September 1, 2014 at 7:45 pm
        Bubbles
        Participant

          So sorry, Jualonso!!!  I know you have been very worried about this possibility.  I would probably go for the ipi.  It helps many.  As you noted, it is required for the expanded access to anti-PD1, which would still be available to you should you need it after the ipi.  However, it is not an easy decision to take, is it?  It is very personal for each of us, so whatever you decide I wish you my best.

          Celeste

          • September 1, 2014 at 7:45 pm
          Bubbles
          Participant

            So sorry, Jualonso!!!  I know you have been very worried about this possibility.  I would probably go for the ipi.  It helps many.  As you noted, it is required for the expanded access to anti-PD1, which would still be available to you should you need it after the ipi.  However, it is not an easy decision to take, is it?  It is very personal for each of us, so whatever you decide I wish you my best.

            Celeste

            • September 1, 2014 at 7:45 pm
            Bubbles
            Participant

              So sorry, Jualonso!!!  I know you have been very worried about this possibility.  I would probably go for the ipi.  It helps many.  As you noted, it is required for the expanded access to anti-PD1, which would still be available to you should you need it after the ipi.  However, it is not an easy decision to take, is it?  It is very personal for each of us, so whatever you decide I wish you my best.

              Celeste

                • September 2, 2014 at 11:52 am
                jualonso
                Participant

                  Firstable, thanks for your good wishes, 

                  I think i will try to find a clinical trial pembro plus ipi or something like that, ot

                  Oherwise i will start with ipi asap, i want to take advantage of my low tumor burden.

                  I know you have a healthy free style, and i would like to know (if is not a problem for you to answer), if you take some "superfood" like curcuma or somethink like that, that may be helped you in your treatment.

                   

                  Thanks again

                  Jualonso

                  • September 2, 2014 at 11:52 am
                  jualonso
                  Participant

                    Firstable, thanks for your good wishes, 

                    I think i will try to find a clinical trial pembro plus ipi or something like that, ot

                    Oherwise i will start with ipi asap, i want to take advantage of my low tumor burden.

                    I know you have a healthy free style, and i would like to know (if is not a problem for you to answer), if you take some "superfood" like curcuma or somethink like that, that may be helped you in your treatment.

                     

                    Thanks again

                    Jualonso

                    • September 2, 2014 at 11:52 am
                    jualonso
                    Participant

                      Firstable, thanks for your good wishes, 

                      I think i will try to find a clinical trial pembro plus ipi or something like that, ot

                      Oherwise i will start with ipi asap, i want to take advantage of my low tumor burden.

                      I know you have a healthy free style, and i would like to know (if is not a problem for you to answer), if you take some "superfood" like curcuma or somethink like that, that may be helped you in your treatment.

                       

                      Thanks again

                      Jualonso

                      • September 3, 2014 at 2:03 am
                      Bubbles
                      Participant

                        Yes, I think the ipi/nivo combo would be the best possible treatment now if you can find a place to get it…plain ipi next.  No.  Sorry.  No super food here.  Just basic regular stuff.  Though of all the "special" foods that supposedly help melanoma…curcumin is the only one that has data to support its effects when ingested.  Here's that study:

                        http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/for-melanomaeat-that-curryagain-we-just.html

                        Hope you find that ipi/nivo trial.  Plain nivo, Plain pembro, as well as the ipi/nivo combo are all available via expanded access programs here in the US…though finding access is not always as easy as we wish it to be.  (And the plain anti-PD1 eap's do require having failed ipi already!)

                        Hang in there!  Celeste
                         

                        • September 3, 2014 at 2:03 am
                        Bubbles
                        Participant

                          Yes, I think the ipi/nivo combo would be the best possible treatment now if you can find a place to get it…plain ipi next.  No.  Sorry.  No super food here.  Just basic regular stuff.  Though of all the "special" foods that supposedly help melanoma…curcumin is the only one that has data to support its effects when ingested.  Here's that study:

                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/for-melanomaeat-that-curryagain-we-just.html

                          Hope you find that ipi/nivo trial.  Plain nivo, Plain pembro, as well as the ipi/nivo combo are all available via expanded access programs here in the US…though finding access is not always as easy as we wish it to be.  (And the plain anti-PD1 eap's do require having failed ipi already!)

                          Hang in there!  Celeste
                           

                          • September 3, 2014 at 2:03 am
                          Bubbles
                          Participant

                            Yes, I think the ipi/nivo combo would be the best possible treatment now if you can find a place to get it…plain ipi next.  No.  Sorry.  No super food here.  Just basic regular stuff.  Though of all the "special" foods that supposedly help melanoma…curcumin is the only one that has data to support its effects when ingested.  Here's that study:

                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/for-melanomaeat-that-curryagain-we-just.html

                            Hope you find that ipi/nivo trial.  Plain nivo, Plain pembro, as well as the ipi/nivo combo are all available via expanded access programs here in the US…though finding access is not always as easy as we wish it to be.  (And the plain anti-PD1 eap's do require having failed ipi already!)

                            Hang in there!  Celeste
                             

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