The Leukemia & Lymphoma Society - Fighting Blood Cancers
6 Replies Latest reply: Jan 6, 2012 11:48 PM by S.Pinchak RSS

Newly diagnosed, T-cell ALL

Cjean36 Registered Users
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Hi, my name is Chris, age 46 and I was just diagnosed with T-cell ALL three months ago. Getting treatment through MDA, and am in remission after first round of HYPER CVAD, just finished roung three. Doctor has told me matter of factly would probably need a SCT due to nature of illness, but may consider POMP protocol? Terrified at SCT process, separation from everyone due to move to out of town hospital, and negative prospects as I have no siblings.  Amazingly hard to find long-term success stories for this type of leukemia with my age.  Anything promising on the horizon?   

  • Re: Newly diagnosed, T-cell ALL
    paralyzed Registered Users
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    Hi Chris

     

     

    Well that suck huh. Lifes turns are not what they should be and suddenly an unwanted trip to a place thats unimaginable.

     

    You are being treated by a great facility and there are many long term survivor stories with ALL. Remember most who post are wanting answers...having a bump in the night etc. The boogyman is left behind for many when they are doing well. Yes...there are exceptions and thank god there are as they talked me off many a ledge. I too find myself reading less frequently and posting less as time goes on..its true.

     

    My wife Linda is the ALL patient...49 years old...Dxed 11/08...Hyper C-Vad...SCT related 10/10 match 4/10. While the SCT process is not the ideal vacation destination, she is now 18 months post transplant and looks like herself..in fact in some ways better. Yes she still feels tired easily but her fears outweighed the process. Invest a year in your recovery and listen to your body. There will be real words of wisdom from the trusted people who have lived through the process you are embarking on. True the may have AML or something different that ALL, but the SCT and what it's meant for equals things up quite a bit.

     

    So Chris...while we havent achieved the Long Term Survival montra yet, there are many who do. With each day we get closer...So are you...you just started later.

     

    Keep us all posted

     

    Jim

  • Re: Newly diagnosed, T-cell ALL
    Lottie Registered Users
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    Hi Chris,

    My name is Lottie and I am the caregiver to my husband, Nate. Nate was diagnosed with preB ALL 12/22/2011 at the age oif 24. Nate underwent a sibling SCT on 3/2/11, and is now doing well and actually back at work.
    Nate has a different type of ALL, and he is a bit younger, but dont let those things scare you. I am quite active on the transplant boards, and there are people there will all different types of leukemia, and some (many) older than you.

    There's a guy on there, Tex, who posts a lot, and he helped me a lot in the beginning when the statistics scared me. He said something along the lines of, even if 99% of people dont make it, that means 1% does, and who's to say that you arent that 1%? Dont think of yourself as a statistic; the doctors cant see the future. They can only tell you the risks and the benefits, and you can decide from there. I do know that the transplant progress is very difficult, and Nate got so sick of being sick that he fell into a deep depression. But, in the end, it has been worth it. And hey, even if it comes back (god forbid) there are some options.

    Oh, and it's true that it's hard to find the success stories because people stop posting. To be honest, once we get 3-4 years out I probably wont be as active either. I'll just want this to be a bad memory. I hope that someday it becomes a bad memory for you, too.

  • Re: Newly diagnosed, T-cell ALL
    irishbechmom Registered Users
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    Hi Cjean36 -   just a quick note. People do tend to drift from here once get better. Life gets back to normal and time runs away.  I just wanted to let you know that there are survivors out there.  I was diagnosed 2/07 I'm still here.  I was 49.  I only did hyper cvad did not have a sct.  If have any question or concerns please post.  Will try to help.Best wishes

  • Re: Newly diagnosed, T-cell ALL
    Fontenrose Registered Users
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    T-cell ALL is just so uncommon in your age group. There are some T-cell kids in the 'my child has cancer' forum, but not even many there. A parent there said that relapse is more common with T-cell than B-cell in the first year, but that once you get past that you are less likely to relapse. (The kids don't go directly to transplant unless the cytogenetics don't look good.) You can search for info on some reactions to the same drugs that are part of the adult protocol in that forum. It's a very active forum, with lots of info.

     

    However, there might be some answers in the Transplant forum, and you could ask questions about your decision there. The success with transplants seem to be so much better than it used to be. If you are not an uncommon ethnic mix, or an athnicity who does not commonly register to donate marrow you should have a good chance of finding a match, or they can use cord blood I believe.

     

    If you post info here on what you decide and why, it might be helpful to those who follow.

  • Re: Newly diagnosed, T-cell ALL
    Hope_Floats Registered Users
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    T cell ALL appears to be uncommon in most age groups.....My son was dx'd with T cell ALL at the end of 2005, he relapsed within 10 months in the CNS and required a transplant which he received at MDA, in 2006.  Your best chance at a cure is an SCT during your first remission.  Not everyone I have encountered have had to have an SCT and are doing well today.  Unfortunately, those have been rare with T cell disease, and they did do the standard 3 year protocol for males.  Although you have no sibling match, I expect they will find you a match, if not there is always the cord blood transplant.  A MUD increases your probability of GVH, but my son developed this and his was a 10/10 sibling match.  The Hyper CVAD protocol is the best for this and was develped there at MDA specifically for T cell disease.  You are in great hands....Who is your leukemia doctor?  My son had Dr. Thomas, if you do go to transplant we loved Dr. De Lima.....He was always upbeat and positive.  I know that back in 2006 there was a pharmaceutical company in California developing a vaccine for T cell disease.  I hadn't checked on them in quite a while and don't know what is going on with that.  I'm sure that if that was ever developed that MDA would have their hands on it.  Wouldn't hurt to ask.....My son is doing well today and we will celebrate his 5 years post transplant!  Wishing you much success on your journey....

     

    Sue

  • Re: Newly diagnosed, T-cell ALL
    S.Pinchak Registered Users
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    Hi Chris,  I was 52 when I was diagnosed with T cell ALL in July 2007.  Had a SCT Dec. 2007  from an unrelated donor.  I was treated at Hackensack University Hosp. in New Jersey.  Saw my oncologist a few months ago and am doing fine.  Hit a few bumps and got through them.  Any questions feel free to ask.   Wishing you the best.  Steve

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