Burkitts Lymphoma

ExGI
ExGI Member Posts: 9
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Looking for others with this rare cancer or have been through the treatment. I was diagnosed on Feb 12 2009 with Burkitts, a few days before that I was treated with R-Chop which really blasted the tumors (which were many). I had the R-CHOP basically to save my life as we couldn't wait on MAYO any longer. I am now half way through round 2 of 4 of the magrath protocol. Would like to know a good diet to be on and lots of other things. Can share ideas and support.

Jeff

Comments

  • UcityChristy
    UcityChristy Member Posts: 1
    #2
    Burkitts Lumphoma
    Hello,

    I saw your posting while looking for Burkett's Lymphoma. My BIL was recently diagnosed with this as well.

    He has a blog over here. It's a lot of his poetry. He is just in his first round of chemo right now.

    http://www.carepages.com/carepages/GratefulForThisPreciousBody

    wishing you well.

    Christy W.
  • bigstargazer
    bigstargazer Member Posts: 2
    #3
    Burkitts Lymphoma
    I just saw these discussion boards yesterday and joined today. I am a Burkitts survivor. Dx in May 2007. Seven treatments of R-Hyper CVAD (What a trip those were). Remission after treatment 3 in October 2007. Took additional 4 treatments. Quarterly PET scans still clean.

    I found that a high bulk diet with lots of rice and broth and soluble fiber helped with the gut issues. I spent most of my time on a low bacteria diet (sucks). After each week of treatment, my appetite came back to the point most allowable foods were good. I had strong desires to eat lots of seasonings (I think my tastebuds were stressed). Beyond the high bulk stuff, I found my diet to be not that remarkable.

    Hope this helps.
  • rox214
    rox214 Member Posts: 1
    #4
    hey, i was diagnosed with
    hey, i was diagnosed with burkitts on feb 14, almost the same day you weere! ha

    ill be on the 4 of 4 treatments next week, and I pretty much everything i could... while my WBCs were low im put on neutropenic diet (im sure u are too)
    and i try to eat lots of bread to minimize the nausea,.. but when im not in it i eat everything from sushi to everything else, of course trying to maintain a healthy diet,

    How is everything going with your treatments? I hope your treatments are going well. Your almost done! Its been hard for me but its not as bad as i thought it would be. Good luck!
  • ExGI
    ExGI Member Posts: 9
    #5
    rox214 said:

    hey, i was diagnosed with
    hey, i was diagnosed with burkitts on feb 14, almost the same day you weere! ha

    ill be on the 4 of 4 treatments next week, and I pretty much everything i could... while my WBCs were low im put on neutropenic diet (im sure u are too)
    and i try to eat lots of bread to minimize the nausea,.. but when im not in it i eat everything from sushi to everything else, of course trying to maintain a healthy diet,

    How is everything going with your treatments? I hope your treatments are going well. Your almost done! Its been hard for me but its not as bad as i thought it would be. Good luck!

    Burkitt's
    Hi it's been awhile since I was on this board, I have since moved on from chemo and radiation to trying to regain my life back, in this process I and some other burkitts patients have started a website www.burkittslymphoma.org check it out if you have time.
  • merrywinner
    merrywinner Member Posts: 626 Member
    #6
    Mayo
    I hope all is well for you. Can I ask, with no disrespect intended, what couldn't wait on Mayo any longer means? I was diagnosed with non Hodgkin's lymphoma. I called for an appointment on a Thursday evening, was scheduled for the following Tuesday(I can't even get an appt. with my primary that quickly) and have been being cared for there for almost a year and a half. I have had no problems whatsoever with waiting for anything and am extremely impressed with all aspects of my care and their vast and cutting edge knowledge of this disease. I am so sorry to hear there was a problem for you and wish you all the best. If there was a problem I know they would want to be informed of it as their primary focus is on the patient and they don't take kindly to any screw ups.
    Sincerely,
    Mary
  • ExGI
    ExGI Member Posts: 9
    #7
    waiting on mayo answer.
    What waiting on mayo means is my biopsy samples were sent there but my burkitts was doubling in size every 16 hours mayo takes up to 10 days to get accurate results. I would have died by then, they had to treat me with RCHOP to save my life and three days later we got the results from mayo and then had to swap to CODOX M IVAC R right away to treat the Burkitt's because RCHOP is not adequate enough for Burkitt's. They thought I had diffuse large b cell lymphoma but were wrong. We were waiting on results from mayo to determine what I actually had.
  • merrywinner
    merrywinner Member Posts: 626 Member
    #8
    ExGI said:

    waiting on mayo answer.
    What waiting on mayo means is my biopsy samples were sent there but my burkitts was doubling in size every 16 hours mayo takes up to 10 days to get accurate results. I would have died by then, they had to treat me with RCHOP to save my life and three days later we got the results from mayo and then had to swap to CODOX M IVAC R right away to treat the Burkitt's because RCHOP is not adequate enough for Burkitt's. They thought I had diffuse large b cell lymphoma but were wrong. We were waiting on results from mayo to determine what I actually had.

    Wow!
    What a scary thing for you to go through. I hope you are doing OK now. I don't know as much about Burkitt's as I do about Follicular NHL. I do remember my MD mentioning this type and saying the patients can literally sit in the waiting room waiting for their results and when they come back into him its bigger. It sounds like it all worked out in the end but feel bad for the stress you had. Thanks for your reply as I was worried about it and am glad you have found good care.
    Mary

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