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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)
    6 cycles R-CHOP induction
    1 cycle Bexxar consolidation
    4 years quarterly Rituxan maintenance
    Consolidation completed Dec. 2010
    Clinical Remission declared Dec. 2010
    PET/CT - 2/22/2011 - NED
    BMB - 3/2/2011 - PCR-Negative; molecular remission
    CT scans semi-annually, latest 6/2014 - NED continues

  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)
    6 cycles R-CHOP induction
    1 cycle Bexxar consolidation
    4 years quarterly Rituxan maintenance
    Consolidation completed Dec. 2010
    Clinical Remission declared Dec. 2010
    PET/CT - 2/22/2011 - NED
    BMB - 3/2/2011 - PCR-Negative; molecular remission
    CT scans semi-annually, latest 6/2014 - NED continues

  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 (AITL-like) Peripheral T-Cell Lymphoma - NOS, stage 4B. "Innumerable" (50+) tumors + Bone Marrow Involvement.
    08/08 4 cycles CHOP+Etoposide plus 4 cycles Gemcitabine+Navelbine+Doxil.
    02/09 Relapse at first post-chemo scan.
    03/09-06/13 Clinical trial of Romidepsin. NED for 64 (28 day) cycles.
    07/13 Whole bunch of stuff happens.
    08/13 "re-induction" of Romidepsin.
    03/14 - Treatment stopped - lack of response. Nodes resolve spontaneously.
    09/14 Nodes appear suddenly. Bunch more stuff happening.
    10/06/14 Infusion begun with Belinostat.
    10/13/14 Relapse confirmed. Fight resumed.

    "Now, faith is the substance of things to be hoped for, the evidence of things that are not seen" 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 (AITL-like) Peripheral T-Cell Lymphoma - NOS, stage 4B. "Innumerable" (50+) tumors + Bone Marrow Involvement.
    08/08 4 cycles CHOP+Etoposide plus 4 cycles Gemcitabine+Navelbine+Doxil.
    02/09 Relapse at first post-chemo scan.
    03/09-06/13 Clinical trial of Romidepsin. NED for 64 (28 day) cycles.
    07/13 Whole bunch of stuff happens.
    08/13 "re-induction" of Romidepsin.
    03/14 - Treatment stopped - lack of response. Nodes resolve spontaneously.
    09/14 Nodes appear suddenly. Bunch more stuff happening.
    10/06/14 Infusion begun with Belinostat.
    10/13/14 Relapse confirmed. Fight resumed.

    "Now, faith is the substance of things to be hoped for, the evidence of things that are not seen" 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 57
    1987 CIN 111. Cervix lasered, no further problems.

    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. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

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  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 (AITL-like) Peripheral T-Cell Lymphoma - NOS, stage 4B. "Innumerable" (50+) tumors + Bone Marrow Involvement.
    08/08 4 cycles CHOP+Etoposide plus 4 cycles Gemcitabine+Navelbine+Doxil.
    02/09 Relapse at first post-chemo scan.
    03/09-06/13 Clinical trial of Romidepsin. NED for 64 (28 day) cycles.
    07/13 Whole bunch of stuff happens.
    08/13 "re-induction" of Romidepsin.
    03/14 - Treatment stopped - lack of response. Nodes resolve spontaneously.
    09/14 Nodes appear suddenly. Bunch more stuff happening.
    10/06/14 Infusion begun with Belinostat.
    10/13/14 Relapse confirmed. Fight resumed.

    "Now, faith is the substance of things to be hoped for, the evidence of things that are not seen" Hebrews 11:1

  9. #9
    Administrator Top User Didee's Avatar
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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 57
    1987 CIN 111. Cervix lasered, no further problems.

    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. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

    CancerForums User Policy

    http://www.cancerforums.net/threads/...picture-policy

    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 (AITL-like) Peripheral T-Cell Lymphoma - NOS, stage 4B. "Innumerable" (50+) tumors + Bone Marrow Involvement.
    08/08 4 cycles CHOP+Etoposide plus 4 cycles Gemcitabine+Navelbine+Doxil.
    02/09 Relapse at first post-chemo scan.
    03/09-06/13 Clinical trial of Romidepsin. NED for 64 (28 day) cycles.
    07/13 Whole bunch of stuff happens.
    08/13 "re-induction" of Romidepsin.
    03/14 - Treatment stopped - lack of response. Nodes resolve spontaneously.
    09/14 Nodes appear suddenly. Bunch more stuff happening.
    10/06/14 Infusion begun with Belinostat.
    10/13/14 Relapse confirmed. Fight resumed.

    "Now, faith is the substance of things to be hoped for, the evidence of things that are not seen" Hebrews 11:1

  11. #11
    thanks for all your input. This is very hard to figure out what to do. maybe someone can answer this. the one thing I did not think to ask the Doc was what is the prognosis if we don't do this CHOP treatment? If it does not respond after 2 or 3 treatments I have to wonder will 6 be any better? 8 they said they can't do any more than 8 because it would cause heart failure. the doc we've seen is at IU med center in Indianapolis. They are a big research hospital. We were told there is no trials going on at this point and CHOP is our best option. We are in Indiana. My husbands is the only income we have. He's missed so much work already. family has had to give us money just to have gas money to go to these appt. Of course the medicals bils are already piling up. I just want to make him better! I don't care about anything else. I've done some research that suggest the EBV or CMV may be a cause. My rational brain tells me we need to get rid of the EBV/CMV. I will read the links you offered. I can only spend so much time reading this stuff before I'm so depressed all I do is cry. I've found very little will pretty much no positive about AITL.

  12. #12
    oh po18guy, I forgot to say great to hear that you have survived late stage. It is good to hear. I don't understand all of the staging. 4 stages right? I know they said his having night sweats made it a B. If he had, had skin involvement would have brought it stage 4 i think. He has 3 nodes in his neck, they removed one. The PET scan found to very small nodes on each side of the groin that they 'assume' is the AITL. We were also told that stage 3 AITL isn't as bad as if it was a stage 3 Lung, Liver, Breast other types of cancer. I guess I don't understand why. I also don't understand why they say it would have made no difference if we had found it 6 months or a year ago. It would seem to me if your caught it in a stage 1 or 2 that would have been better but they act as if the staging of this isn't that important it just gives them something to measure it by. I am just so confused. Mostly I'm scared to death of losing the man I've spent all of my adult live with.

    thanks to everyone!

  13. #13
    Super Moderator Top User po18guy's Avatar
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    Lymphoma staging is different from solid-tumor cancers such as lung, breast, prostate, etc. Here is how it is staged:

    Stage I (early disease): The cancer is found only in a single lymph node region OR in one organ or area outside the lymph node.

    Stage II (locally advanced disease): The cancer is found in two or more lymph node regions on one side of the diaphragm (the breathing muscle that separates the abdomen from the chest).

    Stage III (advanced disease): The disease involves lymph nodes both above and below the diaphragm.

    Stage IV (widespread disease): The lymphoma cells are found in several parts of one or more organs or tissues (in addition to the lymph nodes). Or, it is in the liver, blood, or bone marrow.

    Also, it is classified by either an "A" "B" or "E" added on to the stage. "A" means that you have no symptoms. "B" means that you have symptoms, such as fevers, weight loss, fatigue, night sweats, etc. "E" means that the cancer has spread to an organ outside of the lymphatic system.

    Still, stage 4E is not as terminal as it sounds. It almost sounds like doctors think that your husband's is indolent (slow growing), from what they are saying. That does not agree with what is known about the nature of AITL. It sounds more like they are thinking of Follicular B-cell lymphoma. In that case, it might not make a difference.

    With many T-cell lymphomas, you do not have a year in which to experience symptoms. T-cell goes much faster than that. To me, this raises the question of whether or not you have a correct diagnosis.
    07/08 DX (AITL-like) Peripheral T-Cell Lymphoma - NOS, stage 4B. "Innumerable" (50+) tumors + Bone Marrow Involvement.
    08/08 4 cycles CHOP+Etoposide plus 4 cycles Gemcitabine+Navelbine+Doxil.
    02/09 Relapse at first post-chemo scan.
    03/09-06/13 Clinical trial of Romidepsin. NED for 64 (28 day) cycles.
    07/13 Whole bunch of stuff happens.
    08/13 "re-induction" of Romidepsin.
    03/14 - Treatment stopped - lack of response. Nodes resolve spontaneously.
    09/14 Nodes appear suddenly. Bunch more stuff happening.
    10/06/14 Infusion begun with Belinostat.
    10/13/14 Relapse confirmed. Fight resumed.

    "Now, faith is the substance of things to be hoped for, the evidence of things that are not seen" Hebrews 11:1

  14. #14
    Thank you so much for explaining the staging to me. Makes much more sense now. Here's what we know about how this hit him. maybe 6 months ago he started becoming really tired. More than usually. we thought at the time it was he was working 6 days a week (nothing new for him has done that most his life) We also thought well maybe with his age he was just having lower testotron levels. then around august or sept he began to have severe numbness in his right fingers. Tried to get him to see a doctor but of course he didn't it went away after a couple months. Sometime between the middle of Nov and before Christmas he found 3 nodes (one on the right and 2 on the left) He did not tell me about them. then Jan 16th he found a 4th one at the base of his neck on the left. He finally told me that day I got him in with family doc very next day. saw surgeon, set up biopsy. On Feb 17th we got the results. We have watched the nodes in his neck grow very rapidly since Jan. the PET scan also found 2 nodes in the groin but the doctors did not fell them. We did have the slides sent to IU Simon Cancer Center and they are looking over them. The doctor there said he really does believe it's AITL. I'm not sure why they said it would not have mattered if we had found it 6 months or a year ago.

    Forgot to mention he has also been having night sweats for a few months.
    Last edited by FlutterBee; 03-17-2012 at 06:54 PM.

  15. #15
    Super Moderator Top User po18guy's Avatar
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    Well, the "B" symptoms are there, which makes it generally more serious. Yet, T-cell malignancies are usually aggressive, and treatment at first discovery is almost always the best course. Oncologists would much prefer to treat localized, rather than widespread disease, particularly in the aggressive lymphomas.
    07/08 DX (AITL-like) Peripheral T-Cell Lymphoma - NOS, stage 4B. "Innumerable" (50+) tumors + Bone Marrow Involvement.
    08/08 4 cycles CHOP+Etoposide plus 4 cycles Gemcitabine+Navelbine+Doxil.
    02/09 Relapse at first post-chemo scan.
    03/09-06/13 Clinical trial of Romidepsin. NED for 64 (28 day) cycles.
    07/13 Whole bunch of stuff happens.
    08/13 "re-induction" of Romidepsin.
    03/14 - Treatment stopped - lack of response. Nodes resolve spontaneously.
    09/14 Nodes appear suddenly. Bunch more stuff happening.
    10/06/14 Infusion begun with Belinostat.
    10/13/14 Relapse confirmed. Fight resumed.

    "Now, faith is the substance of things to be hoped for, the evidence of things that are not seen" Hebrews 11:1

  16. #16
    Administrator Top User ChemoMan's Avatar
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    Hi Flutterbee

    By now your head is probably spinning with all the info you have, I can assure you however that here other protocols for your husbands cancer which have not even been mentioned here. Unfortunately with AITL there is not enough evidence to establish a gold standard treatment as yet, and that is your basic problem. The task for you both is to cut through all this information and chose a treatment protocol. I am not going to give you any more information to confuse you at this point but I will point you to Google scholar which will help you gather some evidence together. Whenever you hear of another treatment look it up and get creative with the searches. Hopefully you should be able to get enough evidence together to find the very best treatment.

    Your husband is fighting for his life, but I am here to tell you that this can be done. You need to be strong and support him to believe and achieve his recovery. Don't be overwhelmed, get motivated to find out as much as you can. Knowledge is power in your circumstances.

    Cheers
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

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    but I think I have ended up where I needed to be.

  17. #17
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by ChemoMan View Post
    Don't be overwhelmed, get motivated to find out as much as you can. Knowledge is power in your circumstances.Cheers
    Well said. I would offer that she needs to be assertive, if not aggressive with the medical personnel that she and her husband must deal with. When one is speaking of cancer, "good enough" is simply not good enough. My wife was my angel throughout all of this, pushing for nearer dates, and more testing.
    07/08 DX (AITL-like) Peripheral T-Cell Lymphoma - NOS, stage 4B. "Innumerable" (50+) tumors + Bone Marrow Involvement.
    08/08 4 cycles CHOP+Etoposide plus 4 cycles Gemcitabine+Navelbine+Doxil.
    02/09 Relapse at first post-chemo scan.
    03/09-06/13 Clinical trial of Romidepsin. NED for 64 (28 day) cycles.
    07/13 Whole bunch of stuff happens.
    08/13 "re-induction" of Romidepsin.
    03/14 - Treatment stopped - lack of response. Nodes resolve spontaneously.
    09/14 Nodes appear suddenly. Bunch more stuff happening.
    10/06/14 Infusion begun with Belinostat.
    10/13/14 Relapse confirmed. Fight resumed.

    "Now, faith is the substance of things to be hoped for, the evidence of things that are not seen" Hebrews 11:1

  18. #18
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    Flutterbee, how is your husband now? I'm a 48 y.o. woman Dx with AITL on 5/1/12, currently in RCHOP. Hopefully your husband's disease is responding well to treatment...

    Christy
    aka stripe34

  19. #19
    It's been a while since I checked in, life as been crazy this past year. CHOP failed to get a remission for my husbands AITL. He responded but not fully. My husband opted to wait 3 months and repeat PET scans before he decide what he wanted to do next. We just got repeat PET scans done and it is not good news. He has many more nodes at this time. Including in his neck, chest and stomach. We are now at the point of a stem cell bone marrow transplant of his own stem cells. Does anyone have any info on doing a transplant. We are being told a 50/50 chance it will 'cure' it. IT means some really powerful chemo first. How does anyone know what to do in these situations?

  20. #20
    Christy, Hi, Sorry dealing with this. I've really not been able to fins anyone who has a DX of AITL and to be this young age everything indicates most people are in their 60's. My husbands work is thought to have been the cause but I don't care about the cause I just want him better! How have you done with treatment and what was it staged at?

 
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