nodular lymphocyte dominant lymphoma

lucille23
lucille23 Member Posts: 6
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
My 39 yr old son was recently diagnosed with nodular lymphocyte dominant lymphoma after 8 months of testing. He has no symptoms but a mass was discovered below his abdomen during an appendectomy. His appendix burst & it was a nasty infection. I am concerned about which treatment is best & also want to make sure the diagnosis is correct. The diagnosis was made at Cornell in NYC. We have also sent all the tests to Sloan Kettering for a second opinion. We are scheduled to go there on Nov.9,2009. Can anyone give me some advice? I don't know what to expect & if I've made a good choice about a 2nd opinion. Also, my son is healthy. He's a fire officer in Westchester county & was a recovery worker after 9/11. He was there a few days. Can this be a contributing factor? If so, any advice how to proceed? Any & all suggestions/advice/first hand knowledge is greatly appreciated.

Comments

  • donald51
    donald51 Member Posts: 62
    #2
    nodular lymphocyte dominant lymphoma
    Sorry to here about your sons dx. There are treatments available that do very well. Read the following page -> http://www.springerlink.com/content/t175732428202364/ . A second opinion is a very good choice and very important. Can this be a contributing factor? Could be, but also very hard to prove, most likely. Don't look for any help from the government --> http://russiatoday.com/Top_News/2009-08-24/nyc-firemen.html. God Bless you and your son. Stay strong and positive†
  • lucille23
    lucille23 Member Posts: 6
    #3
    donald51 said:

    nodular lymphocyte dominant lymphoma
    Sorry to here about your sons dx. There are treatments available that do very well. Read the following page -> http://www.springerlink.com/content/t175732428202364/ . A second opinion is a very good choice and very important. Can this be a contributing factor? Could be, but also very hard to prove, most likely. Don't look for any help from the government --> http://russiatoday.com/Top_News/2009-08-24/nyc-firemen.html. God Bless you and your son. Stay strong and positive†

    Thank you for your advice.
    Thank you for your advice. Surprisingly, the doctors at Sloan had never encountered a case such as his. In fact, on Fri. we'll find out if he needs another biopsy to further narrow the diagnosis. It may be a transformed version of nlphl which requires a very different treatment. However, the last biopsy was worse than the appendix operation! I appreciate your advice & just having this contact is helpful & supportive. I am also reaching out to spiritual guidance but am doing this in isolation. The church, like the government, can be very unsympathetic. Thank you again!
  • ERIC 60
    ERIC 60 Member Posts: 4
    #4
    They say this is a young

    They say this is a young person disease. I just turned 60 and was told that a mass in my groin has a diagnosis of NLPHL.
    I live in Milwaukee and the doctor can find no case in this city and wants to treat it as he would Hodgkins disease.
    Not sure where to turn or get info on this type of rare cancer.

    eric
  • catwink22
    catwink22 Member Posts: 281
    #5
    ERIC 60 said:

    They say this is a young

    They say this is a young person disease. I just turned 60 and was told that a mass in my groin has a diagnosis of NLPHL.
    I live in Milwaukee and the doctor can find no case in this city and wants to treat it as he would Hodgkins disease.
    Not sure where to turn or get info on this type of rare cancer.

    eric

    Rituxan?
    Hi Eric,
    So sorry for your lack of help in the medical world. Please read this article and show it to your physician. Rituxan is the drug used in R-CHOP. From what I've read (and I am no way a medical professional) it is used effectively and often in the treatment of Non-Hodgkins, this article specifically states NLPHL. Don't give up your search for a physician even if you have to go outside of Milwaukee. Have you tried the local cancer society or St. Luke's Medical Center in Aurora?

    copy & paste:

    http://journals.lww.com/co-oncology/Abstract/2009/09000/The_emerging_role_for_rituximab_in_the_treatment.3.aspx

    Best Wishes to you,
    Cat
  • DT44
    DT44 Member Posts: 6
    #6
    lucille23 said:

    Thank you for your advice.
    Thank you for your advice. Surprisingly, the doctors at Sloan had never encountered a case such as his. In fact, on Fri. we'll find out if he needs another biopsy to further narrow the diagnosis. It may be a transformed version of nlphl which requires a very different treatment. However, the last biopsy was worse than the appendix operation! I appreciate your advice & just having this contact is helpful & supportive. I am also reaching out to spiritual guidance but am doing this in isolation. The church, like the government, can be very unsympathetic. Thank you again!

    NLP
    My son was also diagnosed with NLP. He is going to Sloane and seeing Dr. Matasar, who has a few patients with NLP. You may want to have your son contact him. I am in the process of looking into radiation theraphy, but still doing my research. I wish your son the best of luck. Hang in there.
  • lucille23
    lucille23 Member Posts: 6
    #7
    DT44 said:

    NLP
    My son was also diagnosed with NLP. He is going to Sloane and seeing Dr. Matasar, who has a few patients with NLP. You may want to have your son contact him. I am in the process of looking into radiation theraphy, but still doing my research. I wish your son the best of luck. Hang in there.

    My son ia also seeing Dr.
    My son ia also seeing Dr. Matasar. He completed 12 rounds of chemo & has completed 15 out of 20 rounds of low-dose radiation. How old is your son? My son had no symptoms & it was discovered when his appendix burst. We're not sure how he developed it but he was a first responder at 9/11. Let me know how your son is doing. God bless & stay strong.

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