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Thread: Questions about CHOP treatment for AITL

  1. #1

    Questions about CHOP treatment for AITL

    My husband was recently diagnosed with AITL. He is 47 yrs old. As we look back he had been having symptoms for 6 months to a year. They have staged it at 3B. There is no involvement of the bone marrow, Liver, spleen, lungs or any other major organs. It presented in his neck with enlarged nodes about 4 months ago. the PET scan did show a couple of nodes in the groin that they aren't sure about since those are there they staged it at 3. with night sweats that brings it to a 3B. He is otherwise healthy always has been.

    Our heads are still spinning. We are to start a treatment of CHOP next week. We will do 6 cycles. Does anyone else have experience with AITL as it seems this is pretty rare. Those who have had a treatment of CHOP can you give any support as to what we are going to be going through? We've been told there is a 30-50% cure rate. my husband see's that as a glass half empty kind of thing.

    How can I best help him through his treatments?

    I'm sorry if I'm not making much sense. My head is so full of questions, anger, emotion it's sometimes hard

  2. #2
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    Hi Flutterbee - sorry you had to find us.

    I did look up AITL, as you said, it's pretty uncommon. CHOP does seem to be a pretty common treatment for it. AITL is apparently pretty aggressive, and you don't have a lot of time to deal with it, nor does retreatment after relapse work all that well - from what I read in a brief literature survey. So basically, don't waste your first, best chance for cure on a treatment that may or may not work.

    As a T-cell lymphoma, there are generally fewer treatments available for AITL, PMBCL, and the like. There just hasn't been as much research done on these as on the more common T-Cell lymphomas. My most honest recommendation would be to find the best specialist you can in this particular variant, and go see him or her. CHOP may be the answer - but I'd sure find that out before entering that treatment protocol. Your very best bet may be a clinical trial through one of the large research and treatment centers like MD Anderson, Fred Hutchinson, Mayo, etc. There must be someone specializing in this disease, somewhere in the US, and that's the person you want to find. Seriously.
    DX May 2010 fNHL - G1, S4
    TX - Clinical Trial through Fred Hutchison Cancer Research Center (U of Washington)
    R-CHOP Induction / Bexxar consolidation / 4 yrs. quarterly Rituxan maintenance
    Consolidation completed Dec. 2010 / Remission declared Dec. 2010, PCR-Negative (Molecular Remision)
    Completed last Rituxan, March 2015 - Remission continues (4 years and counting....)

  3. #3
    Thanks Defens for your help. I'm just so confused about what to do. We've seen a team of doctors at the IU Simon Cancer Center in Indianapolis. It seems he's one of the best in this area. He did not have any trials for us to try at this time. It's the reason we went to him was to see if there was a trial. As awful as this sounds we just don't have the money to move around the country looking for more answers. I'm just so at a lose for what to do. It seems even if we get a remission now it will probably come back. We were told that it would not have mattered if we had found this 6 months or a year ago, looking back we know now that the symptoms were there a year ago. I don't understand why not finding it a year go would not have made a difference. I guess a question I should have asked but didn't think to when we saw the doctors was how long will this treatment prolong your life. You know if your just going to be sick from the CHOP for 5 months for a short term effect is it worth it? I don't know! We have 3 great kids 3 daughters and a son. We have 2 granddaughters and a grandson. oh and 2 granddogs haha my daughter gets upset if I don't include her 'children'. Yeah I'm being silly and making a joke through my tears right now. My husband his the world to the grandchildren. Our girls have always been daddy's girls. Our son has been through so much in his short life of 22 years already. Our youngest daughter and her husband lost his dad to Lung cancer less than 2 years ago. God it was so hard having to tell those kids about this. I'm just a mess right right now. I've been married to this man for 27 years since I was 18. He IS my world! How do you watch the one you love with every part of your being be so sick knowing you will probably lose them. How can I possibly live with out him.
    Sorry I know I seem to just be rambling on. I'm just so lost.

  4. #4
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    It's really rough, I know. I just lost my Mom to metastatic melanoma last year - with her general health, there was really nothing they could do.

    Fortunately, in your situation there IS something you can do! There are treatments - maybe CHOP will do the trick, and it isn't a given that the treatment will be all that horrible. As young as your husband is, he might just sail through it like I did, without much in the way of bad side effects! I worked through my entire four months of treatment, with only a few days off on the actual treatment days.

    Also - since your husband has apparently had this for a while, perhaps it isn't as aggressive and virulent (at least the strain he has) as the literature makes it out to be. If the docs don't think earlier diagnosis would have made a difference, that might infer that the disease may not be that aggressive.

    You might look into treatment at one of the NIH (National Institute of Health) - the government-run cancer research and treatment centers. Treatment there is free, and I think there are even ways to get travel and lodging stipends. I still think you would be well-served to at least get one or more additional opinions - you can even have the biopsy slides sent to places like MD Anderson in Texas for another opinion, just to confirm the diagnosis. That's really important on the rare variants.

    Keep us posted. If this is considered curable, then he has a chance to be cured! And don't worry about the statistics, they define general trends, but not individual results. As a young guy, your husband is already stacking the odds in his favor to beat this!
    DX May 2010 fNHL - G1, S4
    TX - Clinical Trial through Fred Hutchison Cancer Research Center (U of Washington)
    R-CHOP Induction / Bexxar consolidation / 4 yrs. quarterly Rituxan maintenance
    Consolidation completed Dec. 2010 / Remission declared Dec. 2010, PCR-Negative (Molecular Remision)
    Completed last Rituxan, March 2015 - Remission continues (4 years and counting....)

  5. #5
    Super Moderator Top User po18guy's Avatar
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    Hello, FlutterBee! I am sorry to have to welcome you here, but welcome you certainly are. AITL is yet another rare sub-type of peripheral T-cell lymphoma. You have probably heard the not-so-good news: Poor prognosis, aggressive, hard to treat, considered incurable, and probably will relapse. Yet, there are late-stage disease survivors around, of which I am one. AITL is a close cousin of the PTCL-NOS (Peripheral T-Cell Not Otherwise Specified) that I was diagnosed with. As defens has said, there is not much time, or many chances to stop this. If the chemo that is decided upon does not show immediate effect, I would stop it at once and go to something else. Otherwise, the chemo is simply damaging your husband, and not the cancer.

    However, there are several new drugs to use against peripheral T-Cell lymphomas. My staging was worse than your husband's, 4E with 50+ nodes and bone marrow involvement. Yet, I received primary treatment that eliminated it. It relapsed immediately, and my prognosis was dropped to "very poor." But, that was over three years ago. I went into a clinical trial and the experimental drug (Istodax) is now on the market. Much progress is being made.

    I strongly urge you to obtain a second, and even third opinion on diagnosis and treatment. Consider traveling to a large, regional cancer center, that has extensive experience with Peripheral T-Cell Lymphomas. They require a specialized knowledge base to successfully combat. Personally, I would prefer a research facility that offers clinical trials.

    Here is a link to an informational document on AITL. It will give you a little more of an idea of what you and your husband are up against. I see that this link does not work, so just copy it and paste it into your browser.

    http://www.lymphoma.org/atf/cf/{aaf3b4e5-2c43-404c-afe5-fd903c87b254}/ANGIOIMMUNOBLASTIC11.11.PDF

    It is posted at the Lymphoma Research Foundation, which is a great organization. At the bottom of their home page, there is a column entitled "Learn". Click on the second choice in that column, "Booklets and fact sheets." That opens a page in which individual types of lymphoma are listed along the right side. Just click on AITL and the pdf booklet will open. They will also mail you that booklet, and another, which is entitled "Understanding Non-Hodkin Lymphoma"

    http://www.lymphoma.org/site/pp.asp?...mK8E&b=6296735

    Prayer is a wonderful and powerful tool to employ at this time. I must credit it for the amazing sequence of events that allow me to be here among the living.

    All the best,

    Jim
    Last edited by po18guy; 03-16-2012 at 06:12 AM. Reason: broken link
    07/08 DX PTCL - NOS, 4B >50 tumors + BMI
    08/08-12/08 4 cycles CHOEP + 4 cycles GND
    02/09 Relapse
    03/09-06/13 Clinical trial of Romidepsin. NED for 64 (28 day) cycles
    07/13 Second relapse. Auto-immune symptoms
    08/13 Romidepsin increased. Failed 02/14
    09/14 Third relapse
    10/06/14 One cycle Belinostat. Ineffective
    10/13/14 AngioImmunoblastic T-Cell Lymphoma found
    10/25/14 Trial of Alisertib (MLN8237). Failed 01/05/14
    01/12/15 Belinostat resumed. Failed 02/23/15
    02/24/15 Pralatrexate started. Failed 04/17/15
    04/09/15 Gene mapping reveals tumor cells are morphing
    04/22/15 Bendamustine/Carboplatin/Etoposide started.



    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    Hebrews 11:1

  6. #6
    Super Moderator Top User po18guy's Avatar
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    I see that, in all of my jabbering, I forgot to address your main concern. My oncologist will not use CHOP against T-cell lymphomas, as its record against them is poor. Not to suggest that this would be effective against AITL, but I received 4 two-week cycles of EPOCH (aka CHOEP), followed immediately by 4 two-week cycles of GVD (aka GND). Its effectiveness is credited to the use of "two non-overlapping resistance mechanisms." Essentially, the first five drugs attacked the cancer from one direction, while the three drugs that followed attacked it from another. It was rugged going toward the end but here I am, coming up on four years since cancer arrived.
    07/08 DX PTCL - NOS, 4B >50 tumors + BMI
    08/08-12/08 4 cycles CHOEP + 4 cycles GND
    02/09 Relapse
    03/09-06/13 Clinical trial of Romidepsin. NED for 64 (28 day) cycles
    07/13 Second relapse. Auto-immune symptoms
    08/13 Romidepsin increased. Failed 02/14
    09/14 Third relapse
    10/06/14 One cycle Belinostat. Ineffective
    10/13/14 AngioImmunoblastic T-Cell Lymphoma found
    10/25/14 Trial of Alisertib (MLN8237). Failed 01/05/14
    01/12/15 Belinostat resumed. Failed 02/23/15
    02/24/15 Pralatrexate started. Failed 04/17/15
    04/09/15 Gene mapping reveals tumor cells are morphing
    04/22/15 Bendamustine/Carboplatin/Etoposide started.



    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    Hebrews 11:1

  7. #7
    Administrator Top User Didee's Avatar
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    I am one that CHOP worked well on..2 years remission coming up.
    Aussie, age 58
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Out of all the things I have lost, I miss my mind the most.

  8. #8
    Super Moderator Top User po18guy's Avatar
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    Thanks for chiming in. Yes, it still works on some cases. Which sub-type did you have?
    07/08 DX PTCL - NOS, 4B >50 tumors + BMI
    08/08-12/08 4 cycles CHOEP + 4 cycles GND
    02/09 Relapse
    03/09-06/13 Clinical trial of Romidepsin. NED for 64 (28 day) cycles
    07/13 Second relapse. Auto-immune symptoms
    08/13 Romidepsin increased. Failed 02/14
    09/14 Third relapse
    10/06/14 One cycle Belinostat. Ineffective
    10/13/14 AngioImmunoblastic T-Cell Lymphoma found
    10/25/14 Trial of Alisertib (MLN8237). Failed 01/05/14
    01/12/15 Belinostat resumed. Failed 02/23/15
    02/24/15 Pralatrexate started. Failed 04/17/15
    04/09/15 Gene mapping reveals tumor cells are morphing
    04/22/15 Bendamustine/Carboplatin/Etoposide started.



    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    Hebrews 11:1

  9. #9
    Administrator Top User Didee's Avatar
    Join Date
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    NSW Australia
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    As in my sig. PTCL. Stage 2 B I do agree though that CHOP does not work for so many.
    I must say I was rather surprised when I did not relapse after it.
    Aussie, age 58
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Out of all the things I have lost, I miss my mind the most.

  10. #10
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by Didee View Post
    As in my sig. PTCL. Stage 2 B I do agree though that CHOP does not work for so many.
    I must say I was rather surprised when I did not relapse after it.
    Would that be NOS then? All of the rest have some sort of sub-type designator, it would seem. Although NOS encompasses quite a range of unclassified types.
    07/08 DX PTCL - NOS, 4B >50 tumors + BMI
    08/08-12/08 4 cycles CHOEP + 4 cycles GND
    02/09 Relapse
    03/09-06/13 Clinical trial of Romidepsin. NED for 64 (28 day) cycles
    07/13 Second relapse. Auto-immune symptoms
    08/13 Romidepsin increased. Failed 02/14
    09/14 Third relapse
    10/06/14 One cycle Belinostat. Ineffective
    10/13/14 AngioImmunoblastic T-Cell Lymphoma found
    10/25/14 Trial of Alisertib (MLN8237). Failed 01/05/14
    01/12/15 Belinostat resumed. Failed 02/23/15
    02/24/15 Pralatrexate started. Failed 04/17/15
    04/09/15 Gene mapping reveals tumor cells are morphing
    04/22/15 Bendamustine/Carboplatin/Etoposide started.



    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    Hebrews 11:1

 
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