Rituxan just doesn't like me!

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  • hjarchower
    hjarchower Member Posts: 14
    #22
    Rituxan - Can you be put under sedation to receive it?

    I'm in Stage 4 Waldenstrom Macroglobulinemia and this week completed my 6 months of Bendamustine and that wonderful shot of Nulexa. I'm a severe IBS-D patient along with Chronic Migraines. Needless to say, I am having a blast so far. (We all know it could be a lot worse, so I smile). 

    I have tried on 3 occasions to get the Rituxan in my system and it is not working. After a hour or two I feel my belly is going to EXPLODE. We are trying again at a pace of 50, instead of the 200 and 100 we've tried in the past.

    Has anyone heard of getting placed under sedation for this treatment? 

     

    Thanks in advance for any feedback   

     

     

    Howard

     

    2018-02-08

  • ebolastar
    ebolastar Member Posts: 1
    edited February 2018 #23
    Rituximab (Trenda) Problems

    Liz,

    I too have a problem is Rituxan. I am about to start my 6th cycle of Bendamustine-Rituxan. This is given over a two day period every 28 days. The first treatment of Rituxan was terrible. Took 8 hours at a very slow drip sometimes having to stop completely. The 2nd cucle was supposed to go faster. That did not happen with negative reactions showing up as nausea, headache, coughing. The second infusion took 5-6 hours. The infusion nurses expect the first Rituxan to go slowly and by treatment 2-3 they expect your body to tolerate a much more rapid infusion. Not so for me. Every time I get Rituxan it is a 6 hour treatment at minimum

    To counter all of this I am to take these drugs 2 hours prior to the Rituxan infusion.

    1. Ranitidine (150MG)

    2. Doxepin (25 MG)

    3. Dexamethasone ((4) 5MG tablets)

    At the infusion clinic additional drugs are also given. (benadryl)  At one point I took a Rituxan infusion with out the benefit of the 2 hour prior treatment drugs.  That went badly. Uncontrollable body tremors, chills, nausea. 

    In general, the pre-Rituxan drugs seem to make the treatment bearable for me. Immediately following the treatment I feel good. Still riding high on the steroids and supression drugs. At days 3-5 post treatment, the crash and constipation kicks in. I plan on spending most of the next week in bed sleeping, napping, taking Miralax and drinking lots of fruit juice. Have absolutely NO energy. Gradually my energy comes back, platlets build back up and White Blood Cell count comes up (with the help of Neulasta)......just in time for another treatment.

     

  • illead
    illead Member Posts: 884 Member
    #24
    Blast from the past

    Hi ebolastar,

    Well you are posting to an old thread but no worries, it is good info plus it gives some of us oldtimers a reminder of our old friends who we haven't heard from in a long time. Liz, Donna, Vinny, Maggie. Dear John (cobra) and more and of course lest we forget sweet Sue.  We hope they are all doing well.

    Thanks for the memories, Wink

    Becky

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #25
    illead said:

    Blast from the past

    Hi ebolastar,

    Well you are posting to an old thread but no worries, it is good info plus it gives some of us oldtimers a reminder of our old friends who we haven't heard from in a long time. Liz, Donna, Vinny, Maggie. Dear John (cobra) and more and of course lest we forget sweet Sue.  We hope they are all doing well.

    Thanks for the memories, Wink

    Becky

    Blast

    Gee Becky, that was a stroll down memory lane...

    I so wish Sue would check in, if only once, from that Oregon riverbank....

    max

  • po18guy
    po18guy Member Posts: 1,505 Member
    #26
    A possible alternative...

    Is Ofatumumab, also called  Arzerra. It is a monoclonal antibody like Rituxan, but is considered to be more potent. It may have to be used "off-label" but a cutting edge hematologist should not have a real difficulty with that. I received it as part of a clinical trial against graft-versus-host-disease from a stem cell transplant. I also received Diphenhydramine HCI (in the US known as Benadryl) along with my infusions. No such problems.

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