The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 15. Re: Update - trying to catch up
    bwarren25 Registered Users
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    Kelly, as I sit here with tears rolling down my cheeks I am just sick to my stomach to hear this news.  I'm so sorry you have to battle this beast once again but I have no doubt you can do it.  Your attitude is amazing and you've given so much support & wisdom to those of us here.  Now it's time for us to do the same for you!!!!!  Please keep us posted....Betsy

  • 16. Re: Update - trying to catch up
    willowbayfarm Registered Users
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    Hi Kelly,

     

    I'm sorry to hear that you're dealing with this crap again.  Just wanted to let you know you're in my thoughts and prayers as you gear up for the battle.  Good move with those saved cells, I hope you will  be able to make use of them and get this thing on the run once again.

     

    - WBF

  • 17. Re: Update - trying to catch up
    Carrietaker Registered Users
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    Aw, Kelly.

     

    You and Tex remind me of the two Muppet Show curmudgeons.  The two of you are always yucking it up, our old (really old, I'm sure) sages who enjoy the chance to look down upon those whose years haven't yet allowed them to reach the loftty heights of either your sense of humor or of the peanut gallery.

     

    I am sorry that disease has intruded into the gallery and hope that you can leave for awhile and then come back even more robust and kick Tex's uh, comments, down the stairwell.

     

    And the direction is up and at 'em.  May it go well for you.

     

     

     

    Carrie

  • 18. Re: Update - trying to catch up
    pamd Registered Users
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    Oh, man, Kelly, this is so not what I expected or wanted to hear. Jeez, I figured maybe early colon cancer or something, and that's what I was thinking at the absolute worst. I am so sorry, especially because I remember telling my daughter about my relapse, and it was the hardest thing I ever did. Freezing your donor cells---don't think anybody ever even suggested that to me, and I was green enough to not think to ask, but I'm so glad you did do that! Please know that everybody here is pulling for this to be as easy to fix as possible, even if it takes a while. Hey, at least you're already close kin with the Hutch folks, you couldn't be in better hands.

     

    But, boy, Kelly, I'm devastated to hear this. We'll do our best, though, to help see you through this setback.

     

    (((Hugs)))

    Pam

  • 19. Re: Update - trying to catch up
    marta Registered Users
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    Dear Kelly.

     

    I am so sorry, I can't find the words to expresed my sorrow and anger. But you so brave man and you can do it  once again!  You  and yors familly are in my thoughts and prayers.Take care! Marta

  • 20. Re: Update - trying to catch up
    Tex Registered Users
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    Okay, buddy, you know the game.  Get in there and kick its ass.

     

    You know how pissed off I am about this.  But I'm going to hang in with you and support your determination.  I'll indulge my emotions about it after you whip this crap.

     

    Do keep us posted and know I'm pulling for you like you were my own brother.

     

    Blessings

  • 21. Re: Update - trying to catch up
    warrior Registered Users
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    Kelly

    I have been thinking of you all day. I guess your  leukemic stem cells hung out for a  long time before deciding to divide again. Let us know if they find blasts in your bone marrow. Do you know if they did a molecular work up on your original leukemia, if they have the cDNA from the original leukemia or if they are doing a molecular characterization of the relapse cells? The reason I ask is that in the last 4 years the landscape for  the association of more genes with AML has been established, making AML a very heterogenous disease. Some of the new trial chemo therapies and drugs are targeted to specific  mutated genes.For example there are now experimental use of of FLT3 inhibitors. A new gene DNMT3A has been found that is associated with some AMLs and there are drugs that are designed to counter the effects of this enzyme. After they get you back into remission one of these more experimental drugs might be able to target your particular AML mutations if they have done a molecular work up. We are not too far awway from the day when every new presentation of cancer will be sequenced and the right designer drugs given. But we are not there yet...

    hang in there I am rooting for you..... want you to take another adventuresome trip in the future.

  • 22. Re: Update - trying to catch up
    NJer Registered Users
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    I am so sorry to hear about this. Hope they got them all during the surgery. Thinking of you.

  • 23. Re: Update - trying to catch up
    KyGuy Registered Users
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    Thanks for the support!  I knew that I could count on all of you to rally.

     

    Warrior - Wow, great questions.  I don't understand them but will take them to my onc.  The only thing that I know that they ran the first time was the cytogenics and those were normal.

     

    I'm home from the hospital.  I've been spending a lot of the day playing with my granddog.  Years ago, my wife said that she'd never need to be jealous of another woman but she'd be jealous if we had a dog.  Apparently, when I woke from surgery the other day, the first thing I asked for was Hugo (the dog).  Oops.

     

    My family has rallied around me.  That's a huge benefit that I have.  They all seem to have accepted the news.  Last month I painted our bedroom.  When my wife and I were going through some things, we came across those pouches for the Hickman lines - from Tex.  I figured I'd never need those again and we got rid of them.  My wife just did some measurements to make more.  Thanks for the originals Tex.

     

    I don't have any updates.  I'll be hitting the phone early on Monday start things moving.  Hopefully I can get the PET scan completed on Monday since I feel like it holds the key to everything.  I'm guessing the BMB will be Tuesday.

     

    Take care,

    Kelly

  • 24. Re: Update - trying to catch up
    Tex Registered Users
    Currently Being Moderated

    I've still got some pouches.  They didn't move that well and I haven't offered them for awhile.

     

    Let me know if you want them.

     

    Blessings

  • 25. Re: Update - trying to catch up
    canusa Registered Users
    Currently Being Moderated

    Hi Kelly~

    Always appreciate your attitude.  And I'm not surprized that your folks are staying strong--I'm sure that you take after them in this & so many other ways.

    So sorry to hear this news and want to offer encouragement...

    My husband had a recurrence of T-cell lymphoma 4 months ago, almost 4 years post haplo BMT.  Shocked the hell out of everyone, including his docs.  As it turns out, his chimerism had dropped to 84%, so he received a DLI 12 weeks ago.  We considered it a booster shot for his immune system.

    So far, so good.  His chimerism is back to >95% donor.  The most recent scans are promising, in that the remaining areas of concern have not grown & no new areas have developed.

    If you are interested, I'd be happy to share more about the recurrence & DLI experience.  For now, I'm sending prayers & positive thoughts your way.  Stay strong while waiting for the PET scan results.

    Take care & love life,

    Lynne

  • 26. Re: Update - trying to catch up
    KyGuy Registered Users
    Currently Being Moderated

    I can't get the PET scan scheduled until Wednesday - I begged, pleaded, and generally acted pitiful but it didn't help.  They haven't called about the BMB but I'm not as concerned on the timing of that.  I called my wife looking for sympathy and she gave me a to-do list.  Damnit I'd rather sit here and feel miserable!  Since she pays the bills, she's asked my to do some organizing of them in Excel (I've never been able to talk her into using Quicken).  She also asked me to organize our car maintenance files.  So I'll work on that today.  Tomorrow, my youngest son has been tasked with taking me to see the final Harry Potter.

     

    Take care,

    Kelly

  • 27. Re: Update - trying to catch up
    Tex Registered Users
    Currently Being Moderated

    KyGuy wrote:

     

    I begged, pleaded, and generally acted pitiful but it didn't help.

     

    I'm so disappointed.  Imagine, you of all people playing the cancer card.   Thought you knew better.

     

    I think your wife's a smart one.  Keep you busy and your mind occupied.  That's the ticket.

     

    Final thought, have you considered just loading up Quicken and removing Excel for awhile?  That'll give her something to think about.

     

    Hang in there, buddy

  • 28. Re: Update - trying to catch up
    Jeri Registered Users
    Currently Being Moderated

    Oh Kelly, I was so thrown off guard by your news.  I've been semi-absent from the boards with a minor health issue, and don't always come on this forum, but for some reason I did today.  I am floored.  I am so so sad and sorry you are dealing with this news.  I just don't even know what to say.  I think the world of you, and you are in my thoughts and prayers.  I know you'll beat this back, because I know you are just ornery enough to do so!!!

     

    Hugs, Jeri

  • 29. Re: Update - trying to catch up
    Jeri Registered Users
    Currently Being Moderated

    and p.s ~ I am looking forward to having granddogs

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