The Leukemia & Lymphoma Society - Fighting Blood Cancers
8 Replies Latest reply: Jun 20, 2012 11:30 PM by RoyPatti RSS

Anyone getting maintenance Rituxan for over 2 years?

TLJ Registered Users
Currently Being Moderated

In 2005 I was treated with CHOP-R for transformed NHL.  I could never bounce back completley so I found another oncologist after a year and half and he suggested I stay on Rituxan until next relspse.

 

Fast forward to now: The first year I had high doses every 4 months and then the second year I was put on an every 6 months schedule so as of now I have had two and half years of it.  It started making me so sick that I refused the last treatment due in October.  I began having such chronic pain everywhere in my body.  My oncologist insists it is not the Rituxan but since missing that treatment I am doing well.

 

I would like to hear from others that have gone over the two year Rituxan treatment.   I love my oncologist but he is very stuborn and stated that if I stopped I would not live.  The complicating factor for me is  I transformed from follicular to aggresive.  Stage 4. I am now 56 years old and would like to live a little longer.

 

I have been doing my research and basically found that it is still not known if this is the way to go.  Some articles state by staying on it, it  may cause resistance.  My oncologist feels if I do wait for recurrance that each time it comes back it comes back more aggresive. I am open to getting a second opinion but not sure where to go. I live in Texas.

 

Would love to have others provide me with their experience  and education.  Seems like there is just not enough studies done on continuous use yet. 

 

Thanks to everyone for all the support on this site.

  • Re: Anyone getting maintenance Rituxan for over 2 years?
    goodchatt Registered Users
    Currently Being Moderated

    TLJ

     

    I agree with you.. more study needed

     

    Thank goodness for Rituxan..  it has help thousands.. maybe millions.. 

     

    I do feel maybe after a break in time.. not sure what the length of time would be..

    I think Rituxan may work again..  It seem your body is aready doing better..

     

    I think from my experience with Rituxan.. over the years.. I need 6 months.. and if I can

    go longer I do..  I can tell if Rituxan is working.. if I still get some affects from it on the first

    treatment.. Like feeling cold.. or chills.. now have extra blankets ready.. and keep warm from

    the start of treatment..  I still feel a bit stiff in the joints.. from Rituxan.. but after a couple weeks

    I do better.  My counts and nodes shrink back to a comfortable level..

     

    Like you posted.. It seem the only way some time we can get infomation is from another poster

    on these forums.. I have found doctors and health staff to be slippery on these issues.

    I feel they have the good idea.. but each and person and each doctor.. seem to have a plan some times.

     

    keep us updated.. on your experience.. I know I am interested and many more as well.. good topic..

     

    good luck..

    • Re: Anyone getting maintenance Rituxan for over 2 years?
      hilton8433 Registered Users
      Currently Being Moderated

      Hello,

      I also did R-CHOP and then a 2 year Rituxan maintenance treatment, 4 times every 6 months.  I was told by my onc that they wouldn't treat me with Rituxan maintenance for over 2 years because there is just not enough evidence to say it will continue to keep you in remission, and they don't know about the negative side effects.  I always wanted to stay on it b/c I had no problems from it, and it was nice having some type of treatment every now and then.  So I am just surprised to hear that some onc's want to extend the 2 year maintenance therapy, without knowing if it's helping or harming.  Good luck in your decision.

      • Re: Anyone getting maintenance Rituxan for over 2 years?
        veralew Registered Users
        Currently Being Moderated

        Was diagnosed with hemolytic anemia and NHL July 2009.  Had several blood transfusions, 6 initial chop/rituxan treatments. Then, every 6 months rituxan for one year and subsequently rituxan maintenance every 3 months.  Will be continuing rituxan maintenance every 3 months until I get a relapse. It will be 3 years this July since my initial diagnosis.  Not many side effects so far.  Oncologist told me that since it was so difficult to stabilize me after my first diagnosis, had hemoglobin under 6, and almost did do make it, he felt that maintenance was the key to keep me in remission as long as possible for chemo would be stronger when I get a relapse and tougher to get through.  Have blood tests every 3 months and CAT every year. So far so good.

         

        No trials or studies as to maintenance beyond 2 years as FDA approval is only for 2 years.  Not too happy about continuing maintenance every 3 months, very costly too.  Can't get any information on long term maintenance past the 2 years.

         

        If anyone knows of someone else continuing to get maintenance past 3 years, I'd like to hear about it.

         

        Best to everyone!

    • Re: Anyone getting maintenance Rituxan for over 2 years?
      RoyPatti Registered Users
      Currently Being Moderated

      diagnosed in 1995, back when I got CHOP, it worked and then years later I went on Rituxan when I come out of remission.   My latest use of Rituxan was getting a dose every 3 months for 2 years, a total of 8 treatments.  There is evidence that it is keeping people in remission for "longer" periods of time.  Some do, some don't.  However, it seems when I am finished with the so called "maintenance" period, I always have a reoccurance.  I went through a month of radiation, the whole month of January 2012,  to treat a lump that was removed from my "buttocks", yep, my butt!  It was called "marginal" zone, which I'm still not sure what that means?  Anyway, here I go again, because I just found another lump on my leg, had it removed this past Friday for a biopsy, today is Wednesday, and I'm still sitting on the edge of my chair waiting for "THE CALL".  Is it, or isn't it?  It WAS a lymphnode that was removed.  I am going stir crazy waiting for pathology results.  Next time I am going to ask "how long" until pathology completes the report, because I have no idea, just a guess of  7 - 10 days, which seems like at eternity.  I am afraid to leave the phone, because I don't want to miss the call.  I am unable to function on a daily basis, and can not make any plans to look forward to, until these results come in.  I am frozen in time, and seem to be wasting it.  I which the medical field would be more sensitive to the "waiting" period.  Good luck to you, and I hope more drugs are approved to help us get through this.  My best to you.

  • Re: Anyone getting maintenance Rituxan for over 2 years?
    veralew Registered Users
    Currently Being Moderated

    I posted the same question March of this year.  Was diagnosed in July 2009 and  having maintenance every 3 months since my initial 6 R-Chop treatment.  Doctor also says if I don't continue treatment relapse because more frequent and stronger does of drugs are needed to get stabilized. 

     

    I notice your post is dated 2005.  How are you doing?

     

    Vera

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