Stage IV AngioImmunoBlastic T Cell Lymphoma

TulSarah
TulSarah Member Posts: 2
in Lymphoma (Hodgkin and Non-Hodgkin) #1

My 71 year old father was recently diagnosed with this. I'm scouring the internet for information on it and am trying to get as much info from my mother as I can, but she's been by his side at the hospital for about 5 weeks now and is going off no sleep (and possibly denial/grief/etc) so she's not giving me a ton of detail.

I'm mainly looking for long-term info.  Life expectancy, rates, etc.  It's hard to gauge from her info if he's in decent shape and is plugging forward, or if I need to start prepping myself.  I don't want to be blind-sided by anything, but I also don't want to make myself sick with stress if this is something beatable.  I don't know what to expect and that's the scariest part.  Info helps me prep and feel at ease.  Plus, his family lives out of state and I want to be able to tell them when they need to make travel plans to see him once more.  Also, I need to make realistic plans for FMLA.

I'm at work 10 hours a day so it's rare that the doctor is around when I'm able to drop in and him in the hospital, otherwise I'd corner him and ask him to level with me.

Advice? Guidance? Personal experience?
Help a girl out.

 

Thanks for anything you can offer,
Sarah

Comments

  • po18guy
    po18guy Member Posts: 1,508 Member
    #2
    Enjoy every minute with him

    That applies even in good health, as average life expectancy for a male is 74 years. Having said that, AITL is survivable if the particular sub-type responds well to treatment. Sadly, mom is from the generation that believes that cancer is an automatic death sentece, so she is somewhere in that thought process. 

    Information is available from the T Cell Leukemia Lymphoma Foundation, the Lymphoma Research Foundation and a few others. A T-Cell Lymphoma specialist is crucial to survival, as these cancers are rare, aggressive and viturally unknown even by well-experienced hematologists. and pathologists. Here is a parital list of specialists who are the best of the best.

    AITL can and does produce a myriad of strange and seemingly unconnected stmptoms. Those are caused by tiny proteins (cytokines) which are relased by the tumor cells. They tend to produce autoimmune symptoms, such as arthritis, rashes, shortness of breath, and many others.

    It sounds like you can really be a huge help to both mom and dad. All the best to the three of you.

    p.s. I had stage IV-B AITL and it is gone. Was not easy, but it was dooable.

  • TulSarah
    TulSarah Member Posts: 2
    #3
    po18guy said:

    Enjoy every minute with him

    That applies even in good health, as average life expectancy for a male is 74 years. Having said that, AITL is survivable if the particular sub-type responds well to treatment. Sadly, mom is from the generation that believes that cancer is an automatic death sentece, so she is somewhere in that thought process. 

    Information is available from the T Cell Leukemia Lymphoma Foundation, the Lymphoma Research Foundation and a few others. A T-Cell Lymphoma specialist is crucial to survival, as these cancers are rare, aggressive and viturally unknown even by well-experienced hematologists. and pathologists. Here is a parital list of specialists who are the best of the best.

    AITL can and does produce a myriad of strange and seemingly unconnected stmptoms. Those are caused by tiny proteins (cytokines) which are relased by the tumor cells. They tend to produce autoimmune symptoms, such as arthritis, rashes, shortness of breath, and many others.

    It sounds like you can really be a huge help to both mom and dad. All the best to the three of you.

    p.s. I had stage IV-B AITL and it is gone. Was not easy, but it was dooable.

    That's excellent to hear -

    That's excellent to hear - congratulations!  What was your treatment, and how long did it take?  My dad has had the first chemo cycle of 6, with 21 days in between each cycle.

    My father's father passed away from lymphoma 30 years ago, so he panicked when he heard that he has the same thing - fortunately, my mom was the one to tell him about all the progress made in treatments over the decades. 

    I'm trying to push for him to be made as comfortable as possible - the chemo has given him sores in his mouth and blisters on his lips, and his legs ache from that restless leg feeling (he's unable to move them to relieve that feeling).

    He described his current pain level as "industrial" but when the nurse checked on him shortly after and asked his pain level, he said it was at zero, even though his face was in a grimace. 

    He's currently in ICU so I'm headed back up there now to check in.

  • po18guy
    po18guy Member Posts: 1,508 Member
    #4
    A lot

    Since 2008, I have had one T-Cell Lymphoma, remission, then a relapse of it, then remission, then another relapse when it mutated into two T-Cell Lymphomas as well as Myelodysplastic Syndrome (precursor to leukemia) in my marrow. A lot of treatment regmiens and drugs, as well as two clinical trials. I was healthy enough to undergo a stem cell tranplant. Not easy, but necessary and do-able.

    The first line therapy against almost all T-Cell Lymphomas is "clinical trial" - if one is available. Most of them are easier than the traditional chemotherapy regimens. His age and/or co-morbidities may exclude him from trials. However, a really sharp research hematologist can usually find a way to either duplicate or approximate the trial regimens.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #5
    Life expectancy

    I am assuming your Dad was born in 1947. The life expectancy at birth for a male born that year in the US is 73.6 years. But that is a virtually meaningless number referred to as “LEB” = Life Expectancy at Birth. This number includes deaths from all causes - dead babies, accidental deaths, plagues etc and does not consider improvements in medical care! As you get older your total life expectancy increases dramatically. My great great grandfather was born in the 1860’s with an LEB of 46 but lived to be 104. He outlived 3 wives. My grandfather had an LEB of 47 but lived to 77. My Mom lived to be 3 months short of 90. Look at all the old people around you! Your Dad may or may not live a long time. Life is an unknown quantity. But do continue to support and care for him. Don’t let anyone or anything discourage you. Life is worth preserving. Make the best of every day. Even a healthy young person should do that!

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