Recurrance of NHL

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  • yesyes2
    yesyes2 Member Posts: 591
    #22
    unknown said:

    FNHL Recurrence

    FNHL is certainly a disease prone to relapse. Fortunately it is also very treatable. There are so many different therapies that they can try a new one with each recurrence. I have been told that with indolent FNHL there is no such thing as remission in the classic sense. Its always going to be there and could always relapse, though many people go for literally decades and fall prey to traffic accidents, falls, heart problems etc. long before FNHL is serious enough to cause death. One of my Oncologists told me his first patient had FNHL. That was 26 years ago and he still treats that man. Just hang in there and ask questions and don't hesitate to get second or even third opinions. FNHL appears to be a disease on the brink of a cure. Fantastic strides are being made and many in the medical field agree a cure is likely in the near future.

    Someone asked if you can develop immunity to Rituxan. I asked that question at MD Anderson. Answer is yes but its not very likely. However the fact is no one knows for sure how likely it is. The scenario would be that the patient would devlop a strain of b-cell clones clones without the C20 marker. Rituxan would not affect these clones and they could conceivably run amok. It would be a very rare ocurrence. Even if it happened, standard chemo regimens would knock them out. I don't worry about meteor strikes and I put this scenario for Rituxan resistance in the same category.

    Hi everyone,

     

    I haven't been on the board in a long time but wanted to respond to you, GKH.  In January 2008 I was diagnosed with a very rare type of B cell NHL.  It is the same type disease people with solid organ transplants can get.  And it is an aggressive disease.  I was taken off my immune suppression drugs and given Rituxan, 4 weeks and than every 8 wks.  In June 2009 I relapsed, same disease but now CD20 Neg.  I relapsed while on Rituxan maint.  Treated with 6 rounds of RCHOP, remission after second round.  Todate I am still in remission.  Guess I was one of those rare individuals who reached a Rituxan immunity.  However I still receive this drug 4 times a year for my RA.

    I hope all my old time peeps are hanging in there and doing good.

    Best to you all,

    Leslie

  • LaurieKW
    LaurieKW Member Posts: 14
    #23
    wallpa said:

    Hi Myron

    I'm a member of the Yahoo Non-Hodgkin's lymphoma mail group and they have a huge amount of information available. (There are over 600 members--all with NHL.)


    A lot of people think there are two kinds of lymphoma, Hodgkin's and non-Hodgkin's whereas non-Hodgkin's actually encompasses about 40 different kinds of lymphoma. The aggressive kinds are more dangerous at first (some can kill in a matter of months) but when aggressive kinds are successfully treated with chemotherapy, they are much less likely to come back than the indolent varieties.


    From what I've learned, indolent non-Hodgkin's lymphoma almost ALWAYS reoccurs and there are a number of people on that list who have had many more than two reappearances of NHL.


    It has been very educational for me to be on that list. If anyone wants to join but can't figure out how to get to it on Yahoo!, let me know and I will look up the address for you.

    patty

    Hi Patty
     
    i am also new to

    Hi Patty

     

    i am also new to the group - i am recently in remission from  DLBCL and went through 6 cycles of rEPOCH (5 days continuous). Had a set back with the finding of GCT on ovary which was surgically removed and I am quite concerned about recurrence.   I pray a lot - would love the link to the yahoo group to find out how other deal with this.  

  • Unknown
    Unknown
    #24
    yesyes2 said:

    Hi everyone,

     

    I haven't been on the board in a long time but wanted to respond to you, GKH.  In January 2008 I was diagnosed with a very rare type of B cell NHL.  It is the same type disease people with solid organ transplants can get.  And it is an aggressive disease.  I was taken off my immune suppression drugs and given Rituxan, 4 weeks and than every 8 wks.  In June 2009 I relapsed, same disease but now CD20 Neg.  I relapsed while on Rituxan maint.  Treated with 6 rounds of RCHOP, remission after second round.  Todate I am still in remission.  Guess I was one of those rare individuals who reached a Rituxan immunity.  However I still receive this drug 4 times a year for my RA.

    I hope all my old time peeps are hanging in there and doing good.

    Best to you all,

    Leslie

    Glad You Are OK

    My only experience is with FNHL. 

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