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Thread: When does DLBCL recur?

  1. #1
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    I'm deleting this because it was too stupid.
    Last edited by schnauzer; 10-04-2011 at 07:52 PM.

  2. #2
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    Hey man. My cousin who was just treated at the Arkansas Myeloma clinic told me that they said the highest chances of relapse were in the first year, but this was following an ASCT, which he just had done. He is DLBCL, had a partial response to RCHOP, then did a chemo treatment called VTD-PACE, followed by SUPER-BEAM, and then the transplant. He had a CR to the VTD-PACE.

    I don't know about the likelihood of relapse after RCHOP only. Seems like I have seen/heard somewhere (either on the forums or in the articles) it was somewhere around 1 year.

    David
    David
    Age 43
    March 1, 2011 - Grade 1 Follicular Lymphoma from node removed from neck.
    2/22 PET/CT scan revealed one additional node in groin - also removed.
    Officially Grade 1 / Stage 3 due to second node.
    No Other Evidence of Disease.
    7/8 PET/CT shows two new small nodes - opposite sides, neck and groin.
    1/06/12 Completed Rituxan x 4 Monotherapy. 2/29/12 NED! Completed 4 additional maintenance doses of Rituxan. 12/12 NED! 6/14 NED!

  3. #3
    Administrator Top User ChemoMan's Avatar
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    Quote Originally Posted by schnauzer View Post
    Anybody know of any data on when DLBCL is most likely to recur after remission? I've heard there's a spike at 18 months.

    The noise is loud recently . . . .
    Hi Schauzer

    Join the club The noise has been deafening for me the last 2 months.

    There is no "spike' as such. the survival graph drops off steeply in the first 3 years then tapers off. This indicates that the relapse rate is greatest in the first 3 years and then becomes less likely.

    You can read all about survival here

    This is the second bout of noise that has had put a strain on my sanity. if you come up with a way to get rid of it please tell us all

    Cheers
    Age 57
    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.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  4. #4
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    David and ChemoMan, thanks for getting back to me. I don't know what my problem is today. I'm going for a run . . . .
    Diagnosed at 57 years old on December 7 '09 with DLBCL, stage III, bulky
    Completed 8 cycles of R CHOP 21 May 24 '10
    Completed 18 sessions of radiation July 21 '10
    NED since May of '10

  5. #5
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    Quote Originally Posted by ChemoMan View Post
    This is the second bout of noise that has had put a strain on my sanity. if you come up with a way to get rid of it please tell us all
    ChemoMan, you're at the three year mark! Now you can relax. You're going to live forever.

    What I should do to cure my noise is to stop looking for scary stuff on the internet. Re your scary stuff, thanks for the link. I don't have HIV/AIDs, so that should improve my odds. Also, all of that data (every bit of it, as far as I can tell) is pre-Rituxan.

    A couple of glasses of cold California chardonnay work wonders. You might experiment with Aussie chard. It's pretty early for me in San Francisco, so I know it's way too early for you.
    Diagnosed at 57 years old on December 7 '09 with DLBCL, stage III, bulky
    Completed 8 cycles of R CHOP 21 May 24 '10
    Completed 18 sessions of radiation July 21 '10
    NED since May of '10

  6. #6
    Senior User rizza's Avatar
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    Must be something in the air. I've felt the same the past month or so.
    30yo female (27 at diagnosis)
    Mediastinal Large B-cell Lymphoma
    Started six cycles of R CHOP 21 on 8th Jan 2010, completed 23rd April 2010
    4 weeks of daily radiation, started on 18th May 2010
    First clear PET scan 5th August 2010!
    2 years cancer free June 2012!
    My blog: http://dlbcljourney.blogspot.com/

  7. #7
    Top User shakifan's Avatar
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    I have no idea about the answer to your question, but hang in there! I think we all live or will live with the fear of relapse every day!
    43 years old
    Peripheral T-Cell Lymphoma, NOS 4B 4/21/2011
    CHOP-21 to begin 4/26/2011 6-8 cycles
    ICE X 2, auto SCT 12/6/11
    www.caringbridge.org/visit/jeannelawson1

    "Y un dia despues de la tormenta, cuando menos piensas sale el sol"-Shakira
    "One day after the storm, when you least expect it the sun will come out."

  8. #8
    Administrator Top User Kermica's Avatar
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    Schnauzer, I live with it everyday and I hate it! When will it get worse? When will it transform? When will it force chemo (which is a stopgap as it will come back stronger)?

    So, I get your concern, all I can cousel is that you park it in the back of your mind and live life to the fullest while you have it and while you can...not much help, I know, but it is what I do every day. Enjoy the chard and the run...those are among the things that matter.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 63
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09

    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.

    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.

    Significant progression detected in PET scan - December 2012

    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.

    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.

    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".

    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.

    June 2014 - started 2 year maintenance Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.

    Remember the Rules!

  9. #9
    Senior User jmarek's Avatar
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    It's definitely some maddening stuff the mental noise. Every once in a while I have the thought in my head that I look forward to my next appointment for reconfirmation because with every little odd ache and pain I get a bit of worry. I really don't want to waste this time with this though. I guess it shows that were all in the same boat.
    Age 40
    Stage 4 Non-Hodgkin s Large B Cell Lymphoma
    Diagnosed on March 30th 2011/Staged on April 6th

    R-CHOP treatments
    First treatment: April 12th
    Eighth treatment: September 8th
    Have been in Remission since 9/2011

    "Yesterday is history, tomorrow is a mystery, and today is a gift, that's why its called the present"
    Dr. Wayne Dyer

  10. #10
    Administrator Top User ChemoMan's Avatar
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    Hi S



    Your way of dealing with the noise is an example for the rest of us (going for a run) You should of let OP stay We all get noise, that's nothing to ashamed of around here
    Age 57
    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.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  11. #11
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    Location
    United Kingdom
    Posts
    283
    Hi all

    The noise is deafening for the relatives of dependants too (in fact I guess for all close relatives).

    Tom lives at College and we only see him on Skype from time to time. The problem is that's where I first saw him coughing in 2009. Didn't know what it was then and didn't find out until we saw him in person a month or so later. So the associations are always there.

    Last week he had some glands come up - but seems like it was infection as they've gone again now. No B symptoms and this is probably just the normal stuff that everyone gets but doesn't think anything of it. It's just that when you are listening so hard to your body, you are bound to hear things!

    Googling symptoms is bad! Occupying your mind is good!

    Hang in there Schnauzer, Chemoman and Rizza

    Cheers
    21 yr old male (Our Son)
    Diffuse Large B-Cell Non Hodgkins Lymphoma
    Stage 1A Mediastinal Mass 8cm x 7cm
    Diagnosed October 09
    Started course of 6 x R-CHOP 14 in Nov 09
    Course complete Jan 2010
    Remission declared March 4th 2010
    Continues in remission March 2014

 
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