The Leukemia & Lymphoma Society - Fighting Blood Cancers
3 Replies Latest reply: Oct 29, 2012 11:25 AM by stripe34 RSS

Angioimmunoblastic Tcell Lymphoma ?  Anyone dealt with this

KarenR Registered Users
Currently Being Moderated

Hi, my dad was just diagnosed with Angioimmunoblastic Tcell Lymphoma a rare lymphoma that they see one person every three to five years.

Has anyone dealth with this.  My dad is 76 years old and not in good health.  They stated 40% chance of survival with chemo.  I don't think he

will make it through chemo.  He doesn't have a good attitude. (that is saying it mildly).

 

Any assitance would be great.

 

Karen

  • Re: Angioimmunoblastic Tcell Lymphoma ?  Anyone dealt with this
    ChuckLB Registered Users
    Currently Being Moderated

    Karen:

     

    Sorry I did not see your post foe 2 months.

     

    Yes I am a survivor who had to deal with this disease. We have a discussion about AILT on this board, and I have a blog here:

     

     

     

    http://community.lls.org/people/ChuckLB/blog/2009/04/21/my-ailt-experience

     

     

    Please keep me informed about your dad. Feel to ask any questions. I will try to answer them to the best of my ability.

     

    ChuckLB

  • Re: Angioimmunoblastic Tcell Lymphoma ?  Anyone dealt with this
    ABQGRAM Registered Users
    Currently Being Moderated

    My husband was diagnosed in 2008.  I didn’t comment until near the end (in march 2009), but the info' was VERY helpful. THIS IS A WONDERFUL site and I did appreciate it so much. I want to add this which I hope will help others.

     

    My husband was in remission from the most commonly used Chemo for about 2 months. Cancer came back. I searched still again for some relief and this time found on this site a recently added comment about CYCLOSPORINE as treatment. The Dr. agreed and prescribed and my husband took - under protest as it tastes just awful. Sad to say my husband gave up and signed up for hospice. One day later, and the day he died the Dr. called to tell me to tell him to not give up as the cyclosporine had worked.

     

    The references that were on this site are:  "Evaluation and management of angioimmunoblastic T-Cell Lymphoma......" (2008) by Ash A. Alizadeh and Ranjana H. Advani,

    and

    "Treatment of Angioimmunblastic T-cell Lymphoma with cyclosporine"(1997)  by R. Advani, B. I. Sikic R. Warnke, B. I. Sikic, and S. Horning.

     

    I am a little miffed that the Dr. had not found this treatment earlier, especially since he said he had successfully used it for another patient a few years back. I wonder if it might have even been used to begin with in place of the common chemo regimen.

     

    My other comment is I believe that attitude plays a large part. I still feel so badly that I was not able to help my husband in any way - he was so angry. He would not talk. He hated me and the world.  BUT! it was HIS attitude. I could not change it for him. My daughter was my right arm through this. My son was away but did what he could.

     

    The doctor failed or refused to believe my husband's state of mind. My daughter and I (secretly) wrote a letter to the Dr. hoping that he would be able to offer some medical relief - my thought was a mild narcotic that I have taken daily for 15 years for firbromyalgia. The Dr’s. ONLY response was to ask my husband if he was in pain. He said no. He asked if he was depressed. He said no (an outright lie of course). So my husband (and all of us) suffered on for several more months before he died. Maybe the hydocodone would not have helped but with death not far away the risk of addiction was zero and it would not have hurt to TRY.

  • Re: Angioimmunoblastic Tcell Lymphoma ?  Anyone dealt with this
    stripe34 Registered Users
    Currently Being Moderated

    Karen, hopefully your dad is doing well in his fight.  I know this is late, but I wanted to offer some additional resources to you and others who are coming up against AITL / angioimmunoblastic t-cell lymphoma.  There's a new email/support group at yahoo specifically for patients & caregivers with AILT - http://groups.yahoo.com/group/Angioimmunoblastic

     

    In addition, in case the AILT patient or caregiver isn't a "joiner", I've also collected and categorized tons of online info about AILT and put that in a blog here - http://aitl-info.blogspot.com/    I'll update that frequently so that the information stays as current as possible.

     

    Also, one more way to connect, we have a new facebook page for AITL - http://www.facebook.com/#!/AngioimmunoblasticTCellLymphoma

     

    I hope that all is going well for each of you engaged in this fight!

     

    Christy

    cwarthling@gmail.com

    DX 4/2012 AILT angioimmunoblastic t-cell lymphoma

    CHOP/RCHOP 5/2012-7/2012, stopped after 5 cycles due to incomplete response

    Prednisone only 8/2012

    Sorafenib (Nexavar) clinical trial 9/2012-10/2012

    Prepping for allo SCT to start 11/2012

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