Has Anyone Heard from Karin/Lilacbroller?

Cazz
Cazz Member Posts: 106
in Colorectal Cancer #1

She is in Bethesda at NCI on an immunotherapy trial involving depleting her immune system and then infusing her with a cocktail of billions of her own t-cells and a tumor marker so that the t-cells can recognize the cancer cells for the invaders that they are and kill them.  I know that she has been in the hospital for nearly three weeks now and had her first infusion with only minor side effects, but the last update I can find on the Colon Club is on May 21st.  She should have had a couple more infusions by now and I am worried that maybe they didn't go as well as they should - or, hopefully, maybe she just forgot her ipad charger!

Please, Karin, if you read this, could you just give us a quick update - an "I'm fine" will do, as I am sure that I'm not the only one worrying about you and praying for your successful treatment.

Carol

Comments

  • ron50
    ron50 Member Posts: 1,723 Member
    #2
    Hi Cazz

       I saw on colon club last week that she had her t cell infusion. I think she had a small hiccup afterwards with her lungs but everyting had gone as expected and she was in recovery. Nothing terrible tho. Ron.

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #3
    ron50 said:

    Hi Cazz

       I saw on colon club last week that she had her t cell infusion. I think she had a small hiccup afterwards with her lungs but everyting had gone as expected and she was in recovery. Nothing terrible tho. Ron.

    fine :-)

    Hi - Oops. I've just been taking a break from these boards. They're a great source of strength and community, but also they make me a bit sad... And sometimes I get annoyed with people who ask the same questions over and over on different boards.  Our responses take energy, and love, and when somebody doesn't bother to read them, it's disrespectful. I put a lot of time and energy in some of my posts, and I really torques me off when somebody doesn't even bother to search for that topic, but asks a question about it.  i don't even answer - heh.  So rather than get banned from this board, I best keep quiet. 

    I survived the TIL infustions and got home from NIH last Sunday.  They really whacked at my system, and I was wiped out the first few days home. Now I'm a bit better and am walking around, driving, shopping, etc. Naps are a good thing!

    thanks for thinking of me!! I'll update the TIL thread eventually - manana!

    cheers

    Karin Cool

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #4
    lilacbrroller said:

    fine :-)

    Hi - Oops. I've just been taking a break from these boards. They're a great source of strength and community, but also they make me a bit sad... And sometimes I get annoyed with people who ask the same questions over and over on different boards.  Our responses take energy, and love, and when somebody doesn't bother to read them, it's disrespectful. I put a lot of time and energy in some of my posts, and I really torques me off when somebody doesn't even bother to search for that topic, but asks a question about it.  i don't even answer - heh.  So rather than get banned from this board, I best keep quiet. 

    I survived the TIL infustions and got home from NIH last Sunday.  They really whacked at my system, and I was wiped out the first few days home. Now I'm a bit better and am walking around, driving, shopping, etc. Naps are a good thing!

    thanks for thinking of me!! I'll update the TIL thread eventually - manana!

    cheers

    Karin Cool

    Glad to hear you are home!!

    Naps are great!!!  looking forward to hearing about your time there, and was worried when I read above about your lungs.

    i lost my sense of time so was thinking you had been there just a couple of weeks after being injected with your cells, so thought you were in bed there still recovering.

    Welcome back home, and enjoy and do your naps.

    Winter Marie

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #5
    lilacbrroller said:

    fine :-)

    Hi - Oops. I've just been taking a break from these boards. They're a great source of strength and community, but also they make me a bit sad... And sometimes I get annoyed with people who ask the same questions over and over on different boards.  Our responses take energy, and love, and when somebody doesn't bother to read them, it's disrespectful. I put a lot of time and energy in some of my posts, and I really torques me off when somebody doesn't even bother to search for that topic, but asks a question about it.  i don't even answer - heh.  So rather than get banned from this board, I best keep quiet. 

    I survived the TIL infustions and got home from NIH last Sunday.  They really whacked at my system, and I was wiped out the first few days home. Now I'm a bit better and am walking around, driving, shopping, etc. Naps are a good thing!

    thanks for thinking of me!! I'll update the TIL thread eventually - manana!

    cheers

    Karin Cool

    Thanks for checking in Karin

    Thanks for checking in Karin and glad you are doing well.   Looking forward to updates.

  • NewHere
    NewHere Member Posts: 1,428 Member
    #6
    lilacbrroller said:

    fine :-)

    Hi - Oops. I've just been taking a break from these boards. They're a great source of strength and community, but also they make me a bit sad... And sometimes I get annoyed with people who ask the same questions over and over on different boards.  Our responses take energy, and love, and when somebody doesn't bother to read them, it's disrespectful. I put a lot of time and energy in some of my posts, and I really torques me off when somebody doesn't even bother to search for that topic, but asks a question about it.  i don't even answer - heh.  So rather than get banned from this board, I best keep quiet. 

    I survived the TIL infustions and got home from NIH last Sunday.  They really whacked at my system, and I was wiped out the first few days home. Now I'm a bit better and am walking around, driving, shopping, etc. Naps are a good thing!

    thanks for thinking of me!! I'll update the TIL thread eventually - manana!

    cheers

    Karin Cool

    Naps Rule :)

    Glad to hear you are home and up and about.

    I am in my post disconnect, sleep for a few days myself, and Naps rule.  :)

  • Cazz
    Cazz Member Posts: 106
    #7
    lilacbrroller said:

    fine :-)

    Hi - Oops. I've just been taking a break from these boards. They're a great source of strength and community, but also they make me a bit sad... And sometimes I get annoyed with people who ask the same questions over and over on different boards.  Our responses take energy, and love, and when somebody doesn't bother to read them, it's disrespectful. I put a lot of time and energy in some of my posts, and I really torques me off when somebody doesn't even bother to search for that topic, but asks a question about it.  i don't even answer - heh.  So rather than get banned from this board, I best keep quiet. 

    I survived the TIL infustions and got home from NIH last Sunday.  They really whacked at my system, and I was wiped out the first few days home. Now I'm a bit better and am walking around, driving, shopping, etc. Naps are a good thing!

    thanks for thinking of me!! I'll update the TIL thread eventually - manana!

    cheers

    Karin Cool

    Thanks for the Update

    Didn't mean to nag you, but I was getting a bit worried.  I'm so glad to hear that you are home and feeling better - driving and shopping are good things!  Certainly no pressure, but obviously we are all looking forward to hearing how you got on in Bethesda and, more importantly, when you will find out what effect the TIL had on you.  I imagine as its revving up your own t-cells to search and destroy that it would take longer to see results than with the chemicals that are sent to kill everything good or bad.  On the other hand, once they are in gear they should keep roaming like mini pac-men gobbling up all enemies until they are all gone even if it takes weeks or months. 

    Keep on nappin'!

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #8
    lilacbrroller said:

    fine :-)

    Hi - Oops. I've just been taking a break from these boards. They're a great source of strength and community, but also they make me a bit sad... And sometimes I get annoyed with people who ask the same questions over and over on different boards.  Our responses take energy, and love, and when somebody doesn't bother to read them, it's disrespectful. I put a lot of time and energy in some of my posts, and I really torques me off when somebody doesn't even bother to search for that topic, but asks a question about it.  i don't even answer - heh.  So rather than get banned from this board, I best keep quiet. 

    I survived the TIL infustions and got home from NIH last Sunday.  They really whacked at my system, and I was wiped out the first few days home. Now I'm a bit better and am walking around, driving, shopping, etc. Naps are a good thing!

    thanks for thinking of me!! I'll update the TIL thread eventually - manana!

    cheers

    Karin Cool

    Wow, so impressive, Karin, I

    Wow, so impressive, Karin, I am so happy that you are doing good. Best luck with everything.

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