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Karl (Shoopy...How are you?

allmost60
allmost60 CSN Member Posts: 3,178 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi Karl,

 We are all wondering how you are doing? Check in when you can, or feel up to it. Keeping you in my prayers. Love...Sue

(FNHL-stg3-grd2-typA-Dx 6/10-age 63)

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Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 CSN Member Posts: 3,831 Member
    #2
    Sue

    Sue,

    I was wondering about Karl myself yesterday and today.  He said in a post from a week or two ago that he was
    going to "take a break" from the Boards for an indefinite period of time.   I hope he updates us soon.

    max

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  • Shoopy
    Shoopy CSN Member Posts: 210
    #3
    Max Former Hodgkins Stage 3 said:

    Sue

    Sue,

    I was wondering about Karl myself yesterday and today.  He said in a post from a week or two ago that he was
    going to "take a break" from the Boards for an indefinite period of time.   I hope he updates us soon.

    max

    Thanks for asking

    I was hoping to take a break after I got through SCT.  However, it's more of the roller coaster and things getting serious.  The regimen they put me on after Revlimid worked for the first week but not the second.  The regimen was R-GemOxy.  So, we took a week to look at all the options including clinical trials and CART-19.  CART-19 would be my ideal...but this cancer would need to sit there for 5 weeks without chemo...and it just won't do that.  So, last Monday we decided on doing a regimen of EPOCH-R with Velcade.  I started Tuesday here at Area 51 (Roswell).  Should be finished on Sunday.  Everything seems to be moving in a 'good' but slow direction so we'll see soon what happens with the numbers.

    I don't know if I told you but we have a perfect match donor...my brother!  He is so happy as am I.  Now...we need this new regimen to get us to the spot we can start the allo SCT.

    I plan to live forever...so good so far

    Karl

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  • Rocquie
    Rocquie CSN Member Posts: 869 Member
    #4
    Shoopy said:

    Thanks for asking

    I was hoping to take a break after I got through SCT.  However, it's more of the roller coaster and things getting serious.  The regimen they put me on after Revlimid worked for the first week but not the second.  The regimen was R-GemOxy.  So, we took a week to look at all the options including clinical trials and CART-19.  CART-19 would be my ideal...but this cancer would need to sit there for 5 weeks without chemo...and it just won't do that.  So, last Monday we decided on doing a regimen of EPOCH-R with Velcade.  I started Tuesday here at Area 51 (Roswell).  Should be finished on Sunday.  Everything seems to be moving in a 'good' but slow direction so we'll see soon what happens with the numbers.

    I don't know if I told you but we have a perfect match donor...my brother!  He is so happy as am I.  Now...we need this new regimen to get us to the spot we can start the allo SCT.

    I plan to live forever...so good so far

    Karl

    Forever

    Karl, I love your attitude. I love your fighting spirit. I love the determination of your health care team, there at Area 51. I love, love, love that your brother is a perfect match donor and is as happy about it as you are. 

    You really are going to live forever!

    Love, hugs, and continued prayers,

    Rocquie

     

     

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  • illead
    illead CSN Member Posts: 884 Member
    #5
    Max Former Hodgkins Stage 3 said:

    Sue

    Sue,

    I was wondering about Karl myself yesterday and today.  He said in a post from a week or two ago that he was
    going to "take a break" from the Boards for an indefinite period of time.   I hope he updates us soon.

    max

    Now I remember

    You're right Max, I forgot Karl was taking a break, I don't blame him.  Just hope that's all it is.

    Becky

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  • jimwins
    jimwins CSN Member Posts: 2,107 Member
    #6
    Shoopy said:

    Thanks for asking

    I was hoping to take a break after I got through SCT.  However, it's more of the roller coaster and things getting serious.  The regimen they put me on after Revlimid worked for the first week but not the second.  The regimen was R-GemOxy.  So, we took a week to look at all the options including clinical trials and CART-19.  CART-19 would be my ideal...but this cancer would need to sit there for 5 weeks without chemo...and it just won't do that.  So, last Monday we decided on doing a regimen of EPOCH-R with Velcade.  I started Tuesday here at Area 51 (Roswell).  Should be finished on Sunday.  Everything seems to be moving in a 'good' but slow direction so we'll see soon what happens with the numbers.

    I don't know if I told you but we have a perfect match donor...my brother!  He is so happy as am I.  Now...we need this new regimen to get us to the spot we can start the allo SCT.

    I plan to live forever...so good so far

    Karl

    Good to hear from you

    Glad your brother is a perfect match!  Love your attitude also.  Now be careful of those aliens at Area 51 and their "probes" :).

    Hang in there!

    Jim

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  • illead
    illead CSN Member Posts: 884 Member
    #7
    illead said:

    Now I remember

    You're right Max, I forgot Karl was taking a break, I don't blame him.  Just hope that's all it is.

    Becky

    Thank goodness

    So happy you are okay, but know you have a long road ahead.  You give Bill and me strength with your positive outlook.

    Forever prayers for you, B&B

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  • Shoopy
    Shoopy CSN Member Posts: 210
    #8
    jimwins said:

    Good to hear from you

    Glad your brother is a perfect match!  Love your attitude also.  Now be careful of those aliens at Area 51 and their "probes" :).

    Hang in there!

    Jim

    Probes

    Yeah...they are giving me the prednisone right at 9pm...by now I would welcome a probe...

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  • allmost60
    allmost60 CSN Member Posts: 3,178 Member
    #9
    Shoopy said:

    Thanks for asking

    I was hoping to take a break after I got through SCT.  However, it's more of the roller coaster and things getting serious.  The regimen they put me on after Revlimid worked for the first week but not the second.  The regimen was R-GemOxy.  So, we took a week to look at all the options including clinical trials and CART-19.  CART-19 would be my ideal...but this cancer would need to sit there for 5 weeks without chemo...and it just won't do that.  So, last Monday we decided on doing a regimen of EPOCH-R with Velcade.  I started Tuesday here at Area 51 (Roswell).  Should be finished on Sunday.  Everything seems to be moving in a 'good' but slow direction so we'll see soon what happens with the numbers.

    I don't know if I told you but we have a perfect match donor...my brother!  He is so happy as am I.  Now...we need this new regimen to get us to the spot we can start the allo SCT.

    I plan to live forever...so good so far

    Karl

    There you are...

    Hi Karl,

     You amaze me! I'm so happy your brother is a match for you...wonderful! Hang in there friend...you are an inspiration!

    Love and prayers...Sue

    (FNHL-stg3-grd2-typA-Dx 6/10-age 63)

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  • MChantal
    MChantal CSN Member Posts: 107
    #10
    Shoopy said:

    Probes

    Yeah...they are giving me the prednisone right at 9pm...by now I would welcome a probe...

    Karl

    Sending every bit of positive thoughts your way!

    I am so happy your brother is an absolute perfect match :)

     

    Michelle

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