Update & Plan A & B…
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Update & Plan A & B…

› Forums › General Melanoma Community › Update & Plan A & B…

  • Post
    • September 14, 2016 at 3:45 pm
    Julie in SoCal
    Participant

    Dear friends,

    Yesterday I talked with Rock Star Doc and while I still don't know the pathology of my tumor (path report hadn't come yet,) we have a workable plan.

    Plan A is for me to enter the NY-ESO-1 trial (ID-LV305-2013-001) if my tumor expresses the NY-ESO1 protein (only 25% of melanoma patients express this protein). If I do not have the NY-ESO1 protein, then I will enter the JAK-1 trial (INCB 391101-107).  Either way, I'll start one of these trials next Wed.
     
    Plan B is to try to enter a TIL / ACT trial and it will only kick in the event that I progress while I am on one of these Plan A trials.  It also assumes that I have enough tumor to qualify for the TIL / ACT trial Right now I have one 16mmx19mm lung tumor. The first evaluation of Plan A will be at 12 weeks after start, so I'm fairly confident that we'll catch any progression earlier, rather than later. 
     
    Given all the unknowns, (and there are so many!), and all the limitations, this seems like a good way forward.
     
    My process for making the decision was this:
    1) freak out, pray, talk with friends and family, calm down, (breath in and out!!).
    2) Learn about the science (read, ask questions, watch videos).
    3) Research potential clinical trials on clinicaltrials.org, Search by geography, Download trial info and create database of possible trials. Figure out which trials I could possibly qualify for and exclude those that I don't. Having already had Ipi and Pembro automatically disqualified me for some.  Also being allergic to iodine (CT contrast juice) kicks me out of others.  
    4) Read the proposals for this "short list" of trials. and keep praying, and talking to my friends and family (with more breathing in and out!!)..
    5) write questions for Rock Star Doc based on "short list" search. This includes both general and trial specific questions.  Talk with RS Doc.
    6) take leap of faith (God's got me!), choose one trial with a few back up plans and directions based on contingencies, continue to pray and talk with friends and family (continue to breath in and out!!).
     
    I'm not sure this is the best way to go about making this decision, but it helped me create a sense of control and agency in the process, and this is critical for me to be able to go forward well.
     
    Thanks for your help in this crazy process!
     
    Shalom,
    Julie
     
     
     
     
Viewing 29 reply threads
  • Replies
      • September 14, 2016 at 4:07 pm
      Casitas1
      Participant

      Sounds like a great plan to me! Rock Star Doc Rocks! Julie, will you be doing the trial at St. Johns?

      Keep on!

      Paul

        • September 14, 2016 at 4:35 pm
        Julie in SoCal
        Participant

        Thanks!  

        Yup, Plan A is all at St. Johns.

        Julie

        • September 14, 2016 at 4:35 pm
        Julie in SoCal
        Participant

        Thanks!  

        Yup, Plan A is all at St. Johns.

        Julie

        • September 14, 2016 at 4:35 pm
        Julie in SoCal
        Participant

        Thanks!  

        Yup, Plan A is all at St. Johns.

        Julie

      • September 14, 2016 at 4:07 pm
      Casitas1
      Participant

      Sounds like a great plan to me! Rock Star Doc Rocks! Julie, will you be doing the trial at St. Johns?

      Keep on!

      Paul

      • September 14, 2016 at 4:07 pm
      Casitas1
      Participant

      Sounds like a great plan to me! Rock Star Doc Rocks! Julie, will you be doing the trial at St. Johns?

      Keep on!

      Paul

      • September 14, 2016 at 6:12 pm
      Polymath
      Participant

      Hi Julie,

      Your step by step process serves as an excellent guide for those feeling overwhelmed.  Great post!  And of course best wishes that with great care and blessings, you beat back the beast in short order.

      Gary

      • September 14, 2016 at 6:12 pm
      Polymath
      Participant

      Hi Julie,

      Your step by step process serves as an excellent guide for those feeling overwhelmed.  Great post!  And of course best wishes that with great care and blessings, you beat back the beast in short order.

      Gary

      • September 14, 2016 at 6:12 pm
      Polymath
      Participant

      Hi Julie,

      Your step by step process serves as an excellent guide for those feeling overwhelmed.  Great post!  And of course best wishes that with great care and blessings, you beat back the beast in short order.

      Gary

      • September 14, 2016 at 6:48 pm
      Patrisa
      Participant

      Dear Julie, 

      I really admire you and your attitude, you are awesome.. Mel really picked the wrong person to mess with :-)))

      Hope you have nothing but amazing results with your chosen path!

      Love,

      Patrisa

      • September 14, 2016 at 6:48 pm
      Patrisa
      Participant

      Dear Julie, 

      I really admire you and your attitude, you are awesome.. Mel really picked the wrong person to mess with :-)))

      Hope you have nothing but amazing results with your chosen path!

      Love,

      Patrisa

      • September 14, 2016 at 6:48 pm
      Patrisa
      Participant

      Dear Julie, 

      I really admire you and your attitude, you are awesome.. Mel really picked the wrong person to mess with :-)))

      Hope you have nothing but amazing results with your chosen path!

      Love,

      Patrisa

      • September 14, 2016 at 8:37 pm
      jbronicki
      Participant

      Julie, I'm always so impressed by your knowledge, plans and overall greatness.  Will pray for Plan A to be the ticket.  Wishing you the best.

       

      • September 14, 2016 at 8:37 pm
      jbronicki
      Participant

      Julie, I'm always so impressed by your knowledge, plans and overall greatness.  Will pray for Plan A to be the ticket.  Wishing you the best.

       

      • September 14, 2016 at 8:37 pm
      jbronicki
      Participant

      Julie, I'm always so impressed by your knowledge, plans and overall greatness.  Will pray for Plan A to be the ticket.  Wishing you the best.

       

      • September 15, 2016 at 1:02 am
      Mamapegela
      Participant

      Thanks for sharing your plans and your process for figuring it all out Julie.  It helps to pave the way and shine a light for people who are coming up behind you on this path.  

      I'm always learning, learning here.

      Best of everything-

      Peggy

      • September 15, 2016 at 1:02 am
      Mamapegela
      Participant

      Thanks for sharing your plans and your process for figuring it all out Julie.  It helps to pave the way and shine a light for people who are coming up behind you on this path.  

      I'm always learning, learning here.

      Best of everything-

      Peggy

      • September 15, 2016 at 1:02 am
      Mamapegela
      Participant

      Thanks for sharing your plans and your process for figuring it all out Julie.  It helps to pave the way and shine a light for people who are coming up behind you on this path.  

      I'm always learning, learning here.

      Best of everything-

      Peggy

      • September 15, 2016 at 1:04 am
      BrianP
      Participant

      Awesome job Julie.  You have a great plan in place.

      Brian

      • September 15, 2016 at 1:04 am
      BrianP
      Participant

      Awesome job Julie.  You have a great plan in place.

      Brian

      • September 15, 2016 at 1:04 am
      BrianP
      Participant

      Awesome job Julie.  You have a great plan in place.

      Brian

      • September 15, 2016 at 11:28 am
      Bubbles
      Participant

      Hey Julie,

      I think that is a great plan and I LOVE your process! Hang tough! Celeste

      • September 15, 2016 at 11:28 am
      Bubbles
      Participant

      Hey Julie,

      I think that is a great plan and I LOVE your process! Hang tough! Celeste

      • September 15, 2016 at 11:28 am
      Bubbles
      Participant

      Hey Julie,

      I think that is a great plan and I LOVE your process! Hang tough! Celeste

      • September 15, 2016 at 1:22 pm
      debwray
      Participant

      Hi Julie,

      Tapped out a reply to you but somehow lost it before posting last night. Not the first time either..could do with an auto save function and an edit function on the board ….or a delete post function.. For when I get too enthusiastic and hit the post message button twice…

      Anyway. The jist of the message was that I think you have done brilliantly to put together such a well reasoned plan A and B in the time And keeping your sense of humour And remembering to keep breathing. It always helps if you have docs you feel you can trust and have confidence in their expertise, but it still takes guts to look the options in the eye and make decisions on the basis of knowledge of the possible future scenarios. I hope I can manage the process as well as you if and when my turn comes. 

      Well done and thank you for sharing the way you navigated this difficult crossroads.

      Good luck with plan a

      Shalom

      Deb

      • September 15, 2016 at 1:22 pm
      debwray
      Participant

      Hi Julie,

      Tapped out a reply to you but somehow lost it before posting last night. Not the first time either..could do with an auto save function and an edit function on the board ….or a delete post function.. For when I get too enthusiastic and hit the post message button twice…

      Anyway. The jist of the message was that I think you have done brilliantly to put together such a well reasoned plan A and B in the time And keeping your sense of humour And remembering to keep breathing. It always helps if you have docs you feel you can trust and have confidence in their expertise, but it still takes guts to look the options in the eye and make decisions on the basis of knowledge of the possible future scenarios. I hope I can manage the process as well as you if and when my turn comes. 

      Well done and thank you for sharing the way you navigated this difficult crossroads.

      Good luck with plan a

      Shalom

      Deb

      • September 15, 2016 at 1:22 pm
      debwray
      Participant

      Hi Julie,

      Tapped out a reply to you but somehow lost it before posting last night. Not the first time either..could do with an auto save function and an edit function on the board ….or a delete post function.. For when I get too enthusiastic and hit the post message button twice…

      Anyway. The jist of the message was that I think you have done brilliantly to put together such a well reasoned plan A and B in the time And keeping your sense of humour And remembering to keep breathing. It always helps if you have docs you feel you can trust and have confidence in their expertise, but it still takes guts to look the options in the eye and make decisions on the basis of knowledge of the possible future scenarios. I hope I can manage the process as well as you if and when my turn comes. 

      Well done and thank you for sharing the way you navigated this difficult crossroads.

      Good luck with plan a

      Shalom

      Deb

      • September 15, 2016 at 6:47 pm
      DZnDef
      Participant

      Great plan, Julie!  Rock Star Doc has your back and mine too!  Hoping Plan A does the trick for you.  Excellent decision process.  Thanks for sharing.

       

      Cheers!

      Maggie

      • September 15, 2016 at 6:47 pm
      DZnDef
      Participant

      Great plan, Julie!  Rock Star Doc has your back and mine too!  Hoping Plan A does the trick for you.  Excellent decision process.  Thanks for sharing.

       

      Cheers!

      Maggie

      • September 15, 2016 at 6:47 pm
      DZnDef
      Participant

      Great plan, Julie!  Rock Star Doc has your back and mine too!  Hoping Plan A does the trick for you.  Excellent decision process.  Thanks for sharing.

       

      Cheers!

      Maggie

        • September 17, 2016 at 5:14 am
        1derdog
        Participant

        All my best to you Julie & Maggie.  Husband sees Rock Star Doc too.   We strongly believe in him & have faith that he will see us through this & we will all enjoy NED.  We feel very lucky to have found this Doc.  Husband's first doctor took traditional route with no attempt to look outside approved/old treatment plan.  

        Julie, really admire your methodical & optimistic approach.  You got this.  You're in good hands!

        all the best,

        wife & caregiver

        Terry

        • September 17, 2016 at 5:14 am
        1derdog
        Participant

        All my best to you Julie & Maggie.  Husband sees Rock Star Doc too.   We strongly believe in him & have faith that he will see us through this & we will all enjoy NED.  We feel very lucky to have found this Doc.  Husband's first doctor took traditional route with no attempt to look outside approved/old treatment plan.  

        Julie, really admire your methodical & optimistic approach.  You got this.  You're in good hands!

        all the best,

        wife & caregiver

        Terry

        • September 17, 2016 at 5:14 am
        1derdog
        Participant

        All my best to you Julie & Maggie.  Husband sees Rock Star Doc too.   We strongly believe in him & have faith that he will see us through this & we will all enjoy NED.  We feel very lucky to have found this Doc.  Husband's first doctor took traditional route with no attempt to look outside approved/old treatment plan.  

        Julie, really admire your methodical & optimistic approach.  You got this.  You're in good hands!

        all the best,

        wife & caregiver

        Terry

      • September 16, 2016 at 5:15 pm
      DebbieH
      Participant

      Well, crap.  I don't check in here much anymore and I didn't realize you were dealing with this.  It sounds like you have a good, well thought out plan in place.  Many positive thoughts and prayers from me as you become NED once again!

      DebbieH

      • September 16, 2016 at 5:15 pm
      DebbieH
      Participant

      Well, crap.  I don't check in here much anymore and I didn't realize you were dealing with this.  It sounds like you have a good, well thought out plan in place.  Many positive thoughts and prayers from me as you become NED once again!

      DebbieH

      • September 16, 2016 at 5:15 pm
      DebbieH
      Participant

      Well, crap.  I don't check in here much anymore and I didn't realize you were dealing with this.  It sounds like you have a good, well thought out plan in place.  Many positive thoughts and prayers from me as you become NED once again!

      DebbieH

Viewing 29 reply threads
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