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Maintenance Rituxan Questions

Greetings,

For several years I have felt that Rituxan was my miracle drug! However, over the last year I have begun to wonder if it really is too good to be true. My father was diagnosed with Sjogren's Syndrome, an autoimme disease in his 70s. He developed Follicular NHL Stage 3B at 82, had CHOP and lived to 89 and died of Large B Cell NHL. He never had Rituxan. I was diagnosed with Sjorgren's at the age of 46 and developed NMZL Stage 2A eleven years later. My initial treatment was CVPR followed by maintenance R every two months. Then maintenance R was continued until one year ago. Earlier in the year I had been quite ill with what turned out to be microscopic colitis and two bouts of pneumonia; one bad. When my Onc doscontinnued the R he told me that Rituxan can deplete the B cells and this leads to more frequent and more serious infections. So, for the last year I have had IVIG once a month, until last month when the new schedule was IVIG every 2 months. My gammaglobulins are out of wack: high IG, low IA and low IM. Has anyone who has taken maintenance Rituxan for a long time had a similar experience? My primary doc says that the gamma levels look like a precusor to Multiple Myeloma. Any ideas? 

Comments

  • lindary
    lindary Member Posts: 710
    Rituxan

    I just finished my chemo and, hopefully, will be starting Rituxan maintenance soon. I am waiting to hear from the oncology group that is reviewing all of teh test results. I have follicular & diffuesed large B cell lymphomas and was treated with R-Chop so you can see why I am interested to see what responses you get..

  • Rituxan

    Nell,

    Attached is a rather long clinical paper on the side-effects of Rituxan.  Rituaxan mostly kills cancerous B-cells, a good thing of course, but low B-levels becomes common during treatment.   In fact that is why Rituxan is of value against cancer: it kills CD-20 cells issuing from B cells.  Since mostly just NHLs stain for CD-20, Rituxan is of no use agains most HLs.  My rare, odd stain of HL however (which over the decades has been classed alternatively as NHL and HL) does exhibit CD-20, so I took Rituxan for six months.

    The most relevant section in the artice regarding your questions is that which begins with Cytopenias (the various forms of low blood counts).  Many chemos cause  neutropenia (low white count); it is almost routine in many combination therapies.  Shortly after my first-ever infusion I was admitted into the hospital for three days due to neutropenia, but my Neulasta shots kept my counts normal after that one episode (Neulasta is a white cell colony booster for people on chemo).

    Unless your primary doctor is an oncologist I would not read too much into what he thinks of your gamma levels.

    All chemos, and virtually all drugs, have side-effects.  The famous blurb on virtually any strong drug today is "Your doctor has determined that the beneficial effects of this drug outweigh the potential negative side-effects."  In other words, it is a trade-off, a judgement.  Doctors virtually never have treatment choices that are harmeless.  I am unfamiliar with your specific disease, but why not ask the oncologist if there are alternatives to Rituxan ?  My guess is that there are not, or that the alternatives have much worse side-effects than Rituxan does.

    Rituxan is highly effective in either achieving complete remission, or in keeping many forms of NHL at bay, often for many years or even decades.

    My side effects from R-ABVD included chemo fog, serious weight loss, loss of all sense of taste (regained since), sever neuropathy (loss of sense of touch in hands and feet, partially recovered since), liver enzyme problems, neutropenia, severe fatigue (sleeping 15-17 hours per day), and something called "Flu-like Syndrom," in which a person has muscle aches all the time that feel like flu.  Nonetheless, my motto since I began cancer treatments has always been, 

    I'd rather have side-effects than have cancer.      

    In a perfect world we would have neither, but our world is far form that,

    max

     

    http://www.rxlist.com/rituxan-side-effects-drug-center.htm

     

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  • Dianna2013
    Dianna2013 Member Posts: 15
    lindary said:

    Rituxan

    I just finished my chemo and, hopefully, will be starting Rituxan maintenance soon. I am waiting to hear from the oncology group that is reviewing all of teh test results. I have follicular & diffuesed large B cell lymphomas and was treated with R-Chop so you can see why I am interested to see what responses you get..

    Rituxan

    I have Mantle cell Lymphoma diagnosed, 2013.  I had R-Chop followed with Rituxan every 3 mos. I have two left. A cat scan every six. So far it has helped me. My husband has GPA, Granulomatosis Polyangiitis. He can't tolerate his relapse medicine so he gets a treatment each week for three weeks at every 6 mos. From reading posts, it has been a 'wonder' drug.

    Best Wishes,

    Dianna