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7 Replies Latest reply: Feb 3, 2011 3:39 PM by brags RSS

cutaneous b-cell lymphoma marginal zone

mariasolit Registered Users
Currently Being Moderated

My 15 year old son is in the process of being diagnosed with Cutaneous B-cell lymphoma marginal zone type.  The has four lesions at this time.  I don't know of anyone who has had this diagnosis and I very anxious to hear from others that perhaps have dealt with this disease.  Please let me know if you or anyone you know has this and how its going.  thanks

maria

  • Re: cutaneous b-cell lymphoma marginal zone
    brags Registered Users
    Currently Being Moderated

    I'm 31 and just got the same diagnosis. Any insights you have, since it looks like you're about two months ahead of me in the process?

  • Re: cutaneous b-cell lymphoma marginal zone
    mariasolit Registered Users
    Currently Being Moderated

    My son is being seen at Stanford.  He has another app at the end of the month but so far the consensus is watchful waiting.  The docs do not feel Ritumab is needed or worth the possible side effects at this point.  How are they planning on treating yours?

    • Re: cutaneous b-cell lymphoma marginal zone
      brags Registered Users
      Currently Being Moderated

      I'm waiting for two additional biopsies to come back before a decision gets made. They mentioned waiting (the lesion was already removed completely), localized radiation, or rituxan depending on the results. I'm being seen at UPMC in Pittsburgh so I'm confident in the doctors, which has helped me so far.

      • Re: cutaneous b-cell lymphoma marginal zone
        mariasolit Registered Users
        Currently Being Moderated

        Thanks for repyling so fast.  My son had three lesions biopsied all with the same diagnosis.  Since then (2 months ago) he has a few more so it will be interesting to see what they say when we see them on Feb. 25.  He has also developed ulcerative colitis at the same time.  No connection so far other than they are both autoimmune disorders.

        • Re: cutaneous b-cell lymphoma marginal zone
          brags Registered Users
          Currently Being Moderated

          Did they have any feeling that there was some autoimmune link going on? This is my third autoimmune related disease in the last 5 years; thyroid, mastocytosis (rare skin problem), and this. I also had some lesions removed in 2007 and 2009 that were diagnosed as pseudolymphoma, or benign lymphoid hyperplasia.

          • Re: cutaneous b-cell lymphoma marginal zone
            mariasolit Registered Users
            Currently Being Moderated

            They really are not sure.  It's frustrating to say the least.  You are the only person I have come accross on this website with Cutaneous B-cell  - are your lesions on your torso?  He had a bone marrow biopsy two weeks ago and thank god it came back negative.

            • Re: cutaneous b-cell lymphoma marginal zone
              brags Registered Users
              Currently Being Moderated

              The one the diagnosis was based on was from my left shoulder, the previous pseudolymphomas were on my left triceps. The other spots they are checking are on each wrist, but my other skid condition also causes small lesions which these could be. How is the program at Stanford? I grew up about 10 minutes from there and just moved to Pittsburgh this year.

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