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Thread: Grey Zone Lymphoma

  1. #1
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    Grey Zone Lymphoma

    I was recently diagnosed with this rare form of lymphoma. I was originally misdiagnosed with Hodgkins. This form of cancer is hard to deal with for me because of the lack of numbers associated with it. When I was told Hodgkins I saw %90 survival rates and 40 year remissions. With this I'm just left in the dark and hpping for the best. I am fortunate to be close to NIH who have taken me in to a clinical trial. Hopefully my case along with the others will start to shed some light into this grey zone.
    Age 37
    Diagnosed Feb 8 2011 Grey Zone Lymphoma
    Stage 2
    Just started first round of EPOCH March 12 2011

  2. #2
    Administrator Top User brainman's Avatar
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    Hi Cat 911. I just did a brief google search and from what I see treatment and prognosis seem to be about the same as for Hodgkin's. One source I found gave cure rates of 50-90% depending on the exact sub-type of this cancer (DLBCL that looks like what other lymphoma?).

    Well, I am sure others will know more on this subject than I so I will leave it at that . Good luck.
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  3. #3
    Administrator Top User ChemoMan's Avatar
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    Hi cat911

    Dont worry about tomorrow, you will be Ok. Stats for GZL are similar to DLBCL. We have had people with GZL before, 2 from memory and if I find some time I will search for them. Joepet found one recently so it should be too hard. Stick around anyway your words here will help others in the future, mind you only if you feel up to it.
    Good luck
    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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    Thank you guys! I appreciate any encouragement I can get. I'll keep working o t the last two rules. I didn't panic,so I'll just not worry about the numbers and set mine at %100
    Last edited by Cat 911; 03-16-2011 at 09:18 PM. Reason: typo
    Age 37
    Diagnosed Feb 8 2011 Grey Zone Lymphoma
    Stage 2
    Just started first round of EPOCH March 12 2011

  5. #5
    Hi Cat 911,
    I am a Grey Zone survivor for 3 years now.. They treated me with MACOPB (also known as The Kitchen Sink).. it was a treatment every week for 12 weeks.. They followed up with 17 radiation treatments..
    It's beatable.. There are several of us on FaceBook that are Grey Zone surviors and we are all freinds... We would love to have you.. It is a great place to get support and meet the other famillies.. just do a FaceBook search for Scott Bjerke..


    age 52
    Diagnosed with Grey Zone Lymphoma March 2008
    Stage II
    Treatment: MACOPB and Radiation
    Clean for 3 years. Praise God..
    Age 51 (49 at diagnosis)
    Grey Zone Lymphoma
    Stage 2B located in the chest
    12 weeks of MACOP
    Finished Chemo June 2008
    17 radiation treatments in July 2008
    last scan Feb. 2010
    Still Healed

  6. #6
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    I searched on Fb and there's like 10 of you. Lance Lawson
    Age 37
    Diagnosed Feb 8 2011 Grey Zone Lymphoma
    Stage 2
    Just started first round of EPOCH March 12 2011

  7. #7
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    GZL Survivor

    Hi Cat 911,

    I am also a GZL survivor and had my 1yr remission anniversary last month. I actually had my pathology sent to the NIH for analysis and considered doing the EPOCH-R trial there, but decided to go with the standard R-CHOP instead (6 rounds). I'm currently in complete remission and the mass I had in my stomach, which was originally approx. 10 cms, is now benign tissue of about 3 cms.

    How's your treatment regimen going so far?

  8. #8
    Top User shakifan's Avatar
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    Hi Cat 911,
    Glad to hear you're not planning to panic! I have a different , but rare type, of lymphoma which also had very little written about survival rates etc....I worked myself into a frenzy only to have my onc. tell me is was curable...although at a lower rate than something like Hodgkin's. Not that there aren't hoops to jump through....

    Hang in there-there are so many great people here that understand. Are you a Lawson? I'm a Lawson too (by marriage).
    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."

  9. #9
    Hi Cat 911.. sorry it took so long to reply.. I just now noticed that you did.. look for the Scott Bjerke from Oklahoma..
    Age 51 (49 at diagnosis)
    Grey Zone Lymphoma
    Stage 2B located in the chest
    12 weeks of MACOP
    Finished Chemo June 2008
    17 radiation treatments in July 2008
    last scan Feb. 2010
    Still Healed

 
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