The Leukemia & Lymphoma Society - Fighting Blood Cancers
6 Replies Latest reply: Feb 23, 2011 5:33 PM by irishbechmom RSS

need to find other pre T-Cell ALL

timetoshine Registered Users
Currently Being Moderated

hello world and I hope someone will read this and relate...

I'm 44 years old, was diagnosed with pre T- Cell ALL 9/15/10 wbc was 80k at that time.  in remission after induction, completed 1B, 2A, 2B of Hyper-Cvad, blood count is very low after last treatment, however schedule to go back to hospital next week for 3A and intrathecal.

I received a call today that a match donor was found for me.

I'm at lost and don't know what to do. I'm VERY scared of the bone morrow transfer.

Is there anyone out there that only did chemo? do you know of any pre T-Cell ALL survivors?

Im just hoping that there is some one out there....

Thank you!

  • Re: need to find other pre T-Cell ALL
    Jarhead Registered Users
    Currently Being Moderated

    Hello Timetoshine.

     

    I am a 39 y/o male that was diagnosed with Pre B ALL PH+ back in May 09 and i went with the chemo route as opposed to transplant.  I did the full 8 rounds of the Hyper-CVAD protocal at MDAnderson in Houston and i am currently on about month 13 of maintanance phase and doing fantastic...i have been in complete molecular and complete cytogenetic remission since about a month after my treatment started....when i was diagnosed my WBC was 180K with 80% blasts

     

    I am currently taking 70mg Sprycel (Dasatinib) daily...

     

    As far as the translpants go, with the anvances in TKIs, they are starting to see that there is a potential for TKIs to end up replacing translpants based on teh succes rates.

     

    Please let me know if you have any questions

     

    FYI...it is really hard to find alot of success stories on this forum becasue most survivors put it behind them and dont log on.....i am just trying to pay-it forward

  • Re: need to find other pre T-Cell ALL
    WillBarrett Registered Users
    Currently Being Moderated

    Sorry to hear that you are dealing with this.  I am a survivor of T-cell ALL and of a bone marrow transplant 7 years ago when I was in my early thirties..  I would imagine that they are advising you have a transplant due to unfavorable cytogenetics which are predictive of replapse.  My transplant came after a relapse in my CNS and bone marrow.  I was treated mostly at MD Anderson and, if you would like a second opinion, I highly recommend this center.

     

    In any case, I would be glad to answer any questions you may have.  This is nasty stuff, but it most certainly can be beaten.

  • Re: need to find other pre T-Cell ALL
    elizabethsad Registered Users
    Currently Being Moderated

    Hello!

     

    I also am a Pre-B cell ALL patient. I was diagnosed March 19, 2010 and am 49.  I am on the Hype-CVAD regimen.  I will start my last round on January 17th.  I also had the intrathecal treatments with an Ommiya Resevoir port in my head.  I has 4 rounds of this along with the first 4 rounds of chemo.  Low blood counts - welcome to our world.  We live, eat, and breathe by what our counts are.  I have had delays in 3 rounds due to low WBC and platelet counts.  I have had so many transfusions, I have lost count.

     

    I went to MD Anderson in April 2010 to have evaluation on Stem Cell/Bone Marrow Transplant.  At that time, they also ran a Minimal Residual Disease test.  This is a cytometry test.  It showed only 1% blast out of thousands and thousands of cells.  Because I achieved remission after round 1 and the MRD test, they advised to hold off on transplant.  Once you have the transplant - you can not go back and have chemotherapy.  This was the deciding factor for me.  I chose to finish all 8 rounds of the HyperCVAD and then see where I am.  I can chose to have the Bone Marrow Transplant later if needed.

     

    Although the research does not look promising for long term survivorship with adult ALL - there ARE LONG TERM SURVIVORS!!  I have meet some on other discussion boards.

     

    I am here if you want to ask any more questions!

    • Re: need to find other pre T-Cell ALL
      amandible Registered Users
      Currently Being Moderated

      My 35 year old husband was diagnosed with pre-T ALL in July of 2010.  He completed 5 rounds of the hyper-cvad regimen with delays between the 3rd, 4th, and 5th rounds due to neutropenia (low blood counts).  His oncologist in Austin sent us to MD Anderson for a consultation because the original cancerous growth in his throat lymph nodes came back aggressively about 10 days before his 5th round of treatment.

      We arrived at MD Anderson the 15th of last month and about a week later found that he was not in remission and that it had spread to his spine and brain, spleen, chest, and groin lymph nodes.  He is on day 16 of an augmented hyper-cvad regimen that he was started on here at MD Anderson.  He is starting tests next week to see if he is finally in remission and pending those results I do not know what the next step for him is. 

      We have been living unexpectedly in Houston for nearly a month now.  We have a 3 year old son that my husband's parents have been watching for us since his diagnosis.  I quit my job and school to take care of him as he has been in the hospital for treatment or neutropenia nearly every week or two weeks.  Previous to his diagnosis he already had a brain injury that affects his mobility on his left side and short and long term memory. 

      It's been a rough and scary road.  I've attended some support groups for all types of cancer and leukemia and it has helped me.  His disease has made me appreciate so many more things in life and to enjoy simple things.  While I have absolutely no control over this horrible disease I can control myself and how it shapes me as a person.  It's strengthened the bond between not only my husband and I but also my in-laws. 

      There are survivors to this awful disease and I just have to focus on one day at a time the best I can to keep us marching forward.  At any rate, that's a bit of my and our story. 

  • Re: need to find other pre T-Cell ALL
    Hope_Floats Registered Users
    Currently Being Moderated

    My son was T cell ALL/LBL, he recieved his stem cell transplant in November of 2006.  It is just a bag that is given to you intravenously and it does not hurt at all.  You will however have the issues of the conditioning chemo and if you have TBI side effects.  You may have some issues with infections or gvhd.  My son's chief complaint throughout his transplant was the high level of fatigue.  It took him approximately 6-8 months to get back to a full normal life. He is today over 4 years post transplant.  If you are headed to transplant you should wander over to the transplant boards.


    God Speed,

    Sue

  • Re: need to find other pre T-Cell ALL
    irishbechmom Registered Users
    Currently Being Moderated

    Hi I was diagnosed 2/07. I did only chemo and so far so good.  Best of wishes which ever way you go. Hope knowing that there are survivors with only chemo out there. We're here and smiling.As Spock says live long and prosper.

    maureen

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