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Got a plan…sort of
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Got a plan…sort of

› Forums › General Melanoma Community › Got a plan…sort of

  • Post
    • February 28, 2015 at 2:18 am
    Julie in SoCal
    Participant

      Hi there Friends!

      Well, I saw my Rock Star Doc today and he confirmed it; melanoma is back.  It's still small but it's growing (from rice grain to pea size is 3 weeks.

      So, the plan is: Full set of scans (PET/CT MRI Brain) next week Wed  to see if it's gone anywhere else.and following that, Keytruda.

      My options are to 1) resect the sucker and watch and wait to see if another one pops up, 2) reintroduce Ipi (I had a good response to Ipi the first time, seems reasonable I would have another good response), 3) do PD-1 -Keytruda.  I'm thinking I'll take the more global chance fpr

      It's still early in my acceptance of all of this, but I know that this will mean major changes across the board, and It's going to take a while for my hear to catch up.  But it will, and it will be good.

      Thanks friends for listening, and caring.

      Shalom!

      Julie

      Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PD-1?

    Viewing 8 reply threads
    • Replies
        • February 28, 2015 at 4:56 am
        Nell
        Participant

          So sorry it is back. We certainly all deal with this fear, don't we?  I hope the melanoma gets knocked right out!  Sounds like you caught the reoccurance early. I wish you many blessings.

           

          • February 28, 2015 at 4:56 am
          Nell
          Participant

            So sorry it is back. We certainly all deal with this fear, don't we?  I hope the melanoma gets knocked right out!  Sounds like you caught the reoccurance early. I wish you many blessings.

             

            • February 28, 2015 at 4:56 am
            Nell
            Participant

              So sorry it is back. We certainly all deal with this fear, don't we?  I hope the melanoma gets knocked right out!  Sounds like you caught the reoccurance early. I wish you many blessings.

               

              • February 28, 2015 at 11:46 am
              Mat
              Participant

                Julie, sorry to hear.  I know what a bummer it is to progress.  You have some good options.  Is it possible to do both Keytruda and the resection?

                • February 28, 2015 at 11:46 am
                Mat
                Participant

                  Julie, sorry to hear.  I know what a bummer it is to progress.  You have some good options.  Is it possible to do both Keytruda and the resection?

                    • February 28, 2015 at 5:16 pm
                    Julie in SoCal
                    Participant

                      Hi Mat,

                      (Un)fortunately I can't have it both ways – surgery and pd1 as I only have one small met, and we'll use that as an indicator of progress. 

                      I seriously considered surgery, as it would get rid of the met quickly. but the beast has come back now, twice, so I know it's lurking out there, and so surgery doesn't really get me back to living and working in SEAsia.  No treatment does at this point in time. So I may as well go with Keytruda.

                      Julie

                      • February 28, 2015 at 5:16 pm
                      Julie in SoCal
                      Participant

                        Hi Mat,

                        (Un)fortunately I can't have it both ways – surgery and pd1 as I only have one small met, and we'll use that as an indicator of progress. 

                        I seriously considered surgery, as it would get rid of the met quickly. but the beast has come back now, twice, so I know it's lurking out there, and so surgery doesn't really get me back to living and working in SEAsia.  No treatment does at this point in time. So I may as well go with Keytruda.

                        Julie

                        • February 28, 2015 at 5:16 pm
                        Julie in SoCal
                        Participant

                          Hi Mat,

                          (Un)fortunately I can't have it both ways – surgery and pd1 as I only have one small met, and we'll use that as an indicator of progress. 

                          I seriously considered surgery, as it would get rid of the met quickly. but the beast has come back now, twice, so I know it's lurking out there, and so surgery doesn't really get me back to living and working in SEAsia.  No treatment does at this point in time. So I may as well go with Keytruda.

                          Julie

                        • February 28, 2015 at 11:46 am
                        Mat
                        Participant

                          Julie, sorry to hear.  I know what a bummer it is to progress.  You have some good options.  Is it possible to do both Keytruda and the resection?

                          • February 28, 2015 at 4:58 pm
                          killmel
                          Participant

                            Hi Julie,

                             

                            I am so sorry it is BAAACK. Your plan sounds real good.

                            Question: If your scans still show that you are still at Stage 3, will you still be eligble for Keytruda?

                            I know that you have taken IPI, but will your insurance company pay for Keytruda at stage 3 or is your Rock star doctor giving it to you via "off label".

                            I will pray you get good scan results.

                            Shalom back at you!

                            • February 28, 2015 at 4:58 pm
                            killmel
                            Participant

                              Hi Julie,

                               

                              I am so sorry it is BAAACK. Your plan sounds real good.

                              Question: If your scans still show that you are still at Stage 3, will you still be eligble for Keytruda?

                              I know that you have taken IPI, but will your insurance company pay for Keytruda at stage 3 or is your Rock star doctor giving it to you via "off label".

                              I will pray you get good scan results.

                              Shalom back at you!

                              • February 28, 2015 at 4:58 pm
                              killmel
                              Participant

                                Hi Julie,

                                 

                                I am so sorry it is BAAACK. Your plan sounds real good.

                                Question: If your scans still show that you are still at Stage 3, will you still be eligble for Keytruda?

                                I know that you have taken IPI, but will your insurance company pay for Keytruda at stage 3 or is your Rock star doctor giving it to you via "off label".

                                I will pray you get good scan results.

                                Shalom back at you!

                                  • February 28, 2015 at 5:31 pm
                                  Julie in SoCal
                                  Participant

                                    Hi,

                                    yes, right now scans show me to be at stage 3c.  Next week may be different, but that's for another day. I am also BRAF + and I haven't taken Z or another BRAF drug.  So technically, I only meet 1 of the 3 qualifications (failing IPI).  But Rock Star Doc, says me doing  BRAF drug doesn't make sense as I have such a low tumor burden-it would only "piss melanoma off".  So a BRAF drug is counter indicated. I'm not stage 4, but the beast keeps coming back, so it's more like I've got my feet on stage 3c but my toes on Stage 4.  

                                    Rock Star Doc says Keytruda will soon be a front line drug, and the qualifications will go away.  When, I don't know.   I don't know how it's all going to work at this point, but he's (or rather his staff) are willing to fight the fight with my insurance company.   It may be possible for me to qualify for copayment assistance through Pharma if my insurance company doesn't cover it.

                                    this is all I know at this point.  Will know more on Wed.

                                    Julie

                                     

                                     

                                     

                                    • February 28, 2015 at 5:31 pm
                                    Julie in SoCal
                                    Participant

                                      Hi,

                                      yes, right now scans show me to be at stage 3c.  Next week may be different, but that's for another day. I am also BRAF + and I haven't taken Z or another BRAF drug.  So technically, I only meet 1 of the 3 qualifications (failing IPI).  But Rock Star Doc, says me doing  BRAF drug doesn't make sense as I have such a low tumor burden-it would only "piss melanoma off".  So a BRAF drug is counter indicated. I'm not stage 4, but the beast keeps coming back, so it's more like I've got my feet on stage 3c but my toes on Stage 4.  

                                      Rock Star Doc says Keytruda will soon be a front line drug, and the qualifications will go away.  When, I don't know.   I don't know how it's all going to work at this point, but he's (or rather his staff) are willing to fight the fight with my insurance company.   It may be possible for me to qualify for copayment assistance through Pharma if my insurance company doesn't cover it.

                                      this is all I know at this point.  Will know more on Wed.

                                      Julie

                                       

                                       

                                       

                                      • February 28, 2015 at 5:31 pm
                                      Julie in SoCal
                                      Participant

                                        Hi,

                                        yes, right now scans show me to be at stage 3c.  Next week may be different, but that's for another day. I am also BRAF + and I haven't taken Z or another BRAF drug.  So technically, I only meet 1 of the 3 qualifications (failing IPI).  But Rock Star Doc, says me doing  BRAF drug doesn't make sense as I have such a low tumor burden-it would only "piss melanoma off".  So a BRAF drug is counter indicated. I'm not stage 4, but the beast keeps coming back, so it's more like I've got my feet on stage 3c but my toes on Stage 4.  

                                        Rock Star Doc says Keytruda will soon be a front line drug, and the qualifications will go away.  When, I don't know.   I don't know how it's all going to work at this point, but he's (or rather his staff) are willing to fight the fight with my insurance company.   It may be possible for me to qualify for copayment assistance through Pharma if my insurance company doesn't cover it.

                                        this is all I know at this point.  Will know more on Wed.

                                        Julie

                                         

                                         

                                         

                                        • March 1, 2015 at 7:54 pm
                                        jbronicki
                                        Participant

                                          So glad you caught the recurrence early, that helps when making plans of attack.  Wishing you all the best and very quick results.

                                           

                                          • March 1, 2015 at 7:54 pm
                                          jbronicki
                                          Participant

                                            So glad you caught the recurrence early, that helps when making plans of attack.  Wishing you all the best and very quick results.

                                             

                                            • March 1, 2015 at 7:54 pm
                                            jbronicki
                                            Participant

                                              So glad you caught the recurrence early, that helps when making plans of attack.  Wishing you all the best and very quick results.

                                               

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