IL2 here we come

myboys2
myboys2 Member Posts: 50
in Kidney Cancer #1
I posted on all 3 of the sites I study from but in case others of you are not on those sites I thought I would give you our status.

Cody is doing very well. No new evidence of disease. We went to see Dr. Dutcher yesterday and he is planning to have his first IL2 on 5/21. He has no new evidence of disease (phew) and we will only be able to measure by his 2 small liver mets. His bone radiation sites on his skull are completely dead and do not require any touch up thank goodness. His brain is clean as a whistle. We are almost to NED. Come on IL2 let him be the complete responder. Thanks to all of you for your continued support and great source of information.

So for now back to college in Kansas City for 8 weeks.

Gail

Comments

  • lbinmsp
    lbinmsp Member Posts: 266
    #2
    SUCH good news!
    God bless you both - you're both amazingly strong - and fighters! Praying for NED!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #3
    lbinmsp said:

    SUCH good news!
    God bless you both - you're both amazingly strong - and fighters! Praying for NED!

    Superb
    Wonderful news. What do they ascribe the success to? Why the IL2 now?
  • myboys2
    myboys2 Member Posts: 50
    #4
    Texas_wedge said:

    Superb
    Wonderful news. What do they ascribe the success to? Why the IL2 now?

    Good question
    He wants it to see if he can avoid any future cancer hanging out. As he said, he can always go back to Sutent. Honestly, when he left the room to visit someone in intensive care getting IL2 to see what was ahead, doc said honestly we did not expect this to go this way. So my guess is about as good as yours LOL. He responded to sutent immediately shrinking primary from 6 to 5.5 i 5 weeks. He has maintained no new evidence of disease and they have no idea why. He did change the diet to almost entirely veggie, no animal by products, casein, no dairy etc. He has had little SE's on sutent. His path is supposed to be indolent which blows their mind. You could see the confusion on their face. He is mucinous tubular spidle RCC. RARE!! and should be indolent. So that's why they are more then willing to do the HDIL that he wants. He is a tough kid, smart and sincere. He hopes to not be on sutent or anything else like most are. So we will see.
  • alice124
    alice124 Member Posts: 896 Member
    #5
    myboys2 said:

    Good question
    He wants it to see if he can avoid any future cancer hanging out. As he said, he can always go back to Sutent. Honestly, when he left the room to visit someone in intensive care getting IL2 to see what was ahead, doc said honestly we did not expect this to go this way. So my guess is about as good as yours LOL. He responded to sutent immediately shrinking primary from 6 to 5.5 i 5 weeks. He has maintained no new evidence of disease and they have no idea why. He did change the diet to almost entirely veggie, no animal by products, casein, no dairy etc. He has had little SE's on sutent. His path is supposed to be indolent which blows their mind. You could see the confusion on their face. He is mucinous tubular spidle RCC. RARE!! and should be indolent. So that's why they are more then willing to do the HDIL that he wants. He is a tough kid, smart and sincere. He hopes to not be on sutent or anything else like most are. So we will see.

    IL2
    So happy about Cody's progress and he will be in my thoughts and prayers as he continues his fight. IL2 is a tough treatment but Cody sounds even tougher.
  • myboys2
    myboys2 Member Posts: 50
    #6
    alice124 said:

    IL2
    So happy about Cody's progress and he will be in my thoughts and prayers as he continues his fight. IL2 is a tough treatment but Cody sounds even tougher.

    Thank you
    I appreciate the prayers I swear they are working. I told him IL2 is tough but of course the man he visited was on his second week, age mid 40's and doc said he is the first person they have ever had who has had NOTHING not one single SE other then sleeping all the time. Go figure. But yes he is tough. Remember, he has had almost half his skull removed and replaced with titanium before he even had his neph.
  • livealive
    livealive Member Posts: 127
    #7
    myboys2 said:

    Thank you
    I appreciate the prayers I swear they are working. I told him IL2 is tough but of course the man he visited was on his second week, age mid 40's and doc said he is the first person they have ever had who has had NOTHING not one single SE other then sleeping all the time. Go figure. But yes he is tough. Remember, he has had almost half his skull removed and replaced with titanium before he even had his neph.

    May the powers that be heal him
    A simple wish, sincere and true, he has my love as well, he does not have to know me or me him.
    Raj
  • foxhd
    foxhd Member Posts: 3,181 Member
    #8
    livealive said:

    May the powers that be heal him
    A simple wish, sincere and true, he has my love as well, he does not have to know me or me him.
    Raj

    IL2
    Yea for Cody! And you myboys2. This is what the spreading of good fortune is all about. I feel the vibes!!
  • rae_rae
    rae_rae Member Posts: 300 Member
    #9
    foxhd said:

    IL2
    Yea for Cody! And you myboys2. This is what the spreading of good fortune is all about. I feel the vibes!!

    Will keep the prayers coming
    For you and Cody for fantabulous results!

    Rae
  • LISAinTN
    LISAinTN Member Posts: 143
    #10
    Congrats!
    Congrats to you both! I have a son named Cody, too. Please keep us updated when you can and yes, prayers do work.

    Blessings,
    Lisa
  • garym
    garym Member Posts: 1,647
    #11
    myboys2 said:

    Good question
    He wants it to see if he can avoid any future cancer hanging out. As he said, he can always go back to Sutent. Honestly, when he left the room to visit someone in intensive care getting IL2 to see what was ahead, doc said honestly we did not expect this to go this way. So my guess is about as good as yours LOL. He responded to sutent immediately shrinking primary from 6 to 5.5 i 5 weeks. He has maintained no new evidence of disease and they have no idea why. He did change the diet to almost entirely veggie, no animal by products, casein, no dairy etc. He has had little SE's on sutent. His path is supposed to be indolent which blows their mind. You could see the confusion on their face. He is mucinous tubular spidle RCC. RARE!! and should be indolent. So that's why they are more then willing to do the HDIL that he wants. He is a tough kid, smart and sincere. He hopes to not be on sutent or anything else like most are. So we will see.

    Tough kid...
    Seems like he gets that from his mom...bless you both.

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