Maintenance Rituxan NHL

acs123
acs123 Member Posts: 12
in Lymphoma (Hodgkin and Non-Hodgkin) #1

After initial treatment and during the every 2 month maintenance with Rituxan, are you receiving the same amount of Rituxan at the maintenance visits as you received during treatment? Are some of you receiving a smaller amount of Rituxan during maintenance and if so, how much?

i would really appreciate your input. I am receiving the same amount during maintenance as I received during treatment. (NHL follicular, treatment B-R).

Comments

  • acs123
    acs123 Member Posts: 12
    edited March 2017 #2
    Frequency of maintenance Rituxan

    i am on maintenance Rituxan every 2 months for 2 years (NHL follicular, stage 3). I have read that some maintenance protocols are every three months.  I would appreciate feedback on your protocol as I have only had 2 maintenance treatments so far.

    There is also the question of maintenance vs non-maintenance and while the literature supports maintenance for  longer progression-free survival, I have also seen articles that suggest that a trend could be towards no maintenance. Although I think that those of us on maintenance probably feel safer from a recurrence while we feel that Rituxan is keeping our lymphoma in check.

    My concern centers around the question about whether we can form a resistance to Rituxan, or even a later stage allergic response to it.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    edited March 2017 #3
    Yes

    My 26 infusions were all the same volume of Rituxan solution. I had a strong allergic reaction on my first infusion but no problems after that. My regime was 1 infusion per week for 8 weeks followed by 1 infusion every 8 weeks for 28 months. Each infusion was preceded by a dose of benadryl and acetomenophen.

  • paella
    paella Member Posts: 81
    edited March 2017 #4
    I don't know if I'm on the same dosage...

    ... but I will send my doc an email and ask.

    Paella

  • acs123
    acs123 Member Posts: 12
    edited March 2017 #5
    Maintenance Rituxan

    ShadyGuy and Paella thanks for your responses. Are you both NHL follicular? My first time on the boards so it's gratifying to get replies! Paella, thanks for asking your oncologist about this.

    I had 3 treatments with Bendamustine/Rituxan 3-weekly intervals (oncologist does 4 usually but I had serious rash so didn't have 4th one), then 3 Rituxan a month apart. Next started maintenance on same dose as the treatment dose (650 mls ).  Maintenance given with 25 mls benedryl and 40 mls cortisone. Due to be every 8 weeks for 2 years. Have had 3 maintenance doses.

    I have had a great response to the treatment so I feel really grateful about that.

    Since this last maintenance 10 days ago: 1st day: awake whole night until midday next day (cortisone). 5th, 6th, 7th day did not feel myself, felt out of it (?cortisone), then rest of week tummy ache and still don't feel well. Wondering if this feeling now is due to the Rituxan.

    ShadyGuy, great that you had such a smooth path with your maintenance and I note that you didn't have cortisone with your maintenance.

    Questions: what medication are others having during Rituxan maintenance? and how do you feel on maintenance? I assume that it can also vary from treatment to treatment.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    edited March 2017 #6
    Yes

    i have folliculr stage IV, initially with b symptoms. Very widespread but no major organs involved. My experience was that after the first few infusions, main issue was boredom. I did suffer leg and knee pain and my fingernails got kinda weird. That all went away after treatment ended. Currently NED from lymphoma but having troubling symptoms and hospitalized in January for lumps in groin. But they went away. Next scan in October. Good luck!

  • acs123
    acs123 Member Posts: 12
    edited March 2017 #7
    Thanks!

    Thanks for replying, ShadyGuy. This is my first time on discussion boards and I find it comforting to connect with others in this situation.

    I also had very widespread, weight loss b symptom. My slides show a high proliferation rate (70-80%) which concerns me but grateful to be NED for last 2 scans.

    Sorry to hear about hospitalization and your troubling symptoms. I wish you well and good luck for October scan.

  • paella
    paella Member Posts: 81
    edited March 2017 #8
    Not sure while you're not sleeping - BUT

     

    I was diagnosed in late ’11 with DLBCL and Follicular.  6 rounds of R-EPOCH knocked out the DLBCL but my doc said the Follicular would come back.  It did, about 5 years later and I had 4-plus months of prep for an Autologous Stem Cell Transplant which took place of July 6 of ’16.  You’re right – the cortisone is keeping you from sleeping.   Am now on the Rituximab maintenance (every 3 months for 3 years but still don’t know what dosage) but I don’t think I’m getting steroids with that.  My husband (who was diagnosed with a rare type of pancreatic cancer 5 months ago) gets 24 mgs of steroid over 4 days and he’s up a whole lot those nights.  Naps help.  I recommend OTC Benadryl  and Ativan plus a bad book-on-tape (nothing really good, just a lulling voice…preferably a male voice.  Crazy but it seems to work.)

    Best - Paella

     

     

     

  • acs123
    acs123 Member Posts: 12
    #9
    Rituxan maintenance

    Thanks for your reply, Paella. You've had a lot to cope with in your treatments and it's good to hear that you've reached the maintenance stage.

    I'm interested to see that you are on 3-monthly Rituxan for 3 years. Do you know others with follicular on this maintenance schedule? I am on 2-monthly for 2 years

  • yesyes2
    yesyes2 Member Posts: 591
    #10
    Rituxan Dosage

    Hi ACS123,  

    Sorry that you have a need to be here.  But welcome to the group.. It is my experience and from what I have read on Rituxan, that for cancer treatment the dosage is based on a formula using the patients weight and body mass, for my treatments it was agound 700 mg per infusion.  Many chemo agents use this same formula.  For RA use it is a straight 1,000 mgs per application.   I have been receiving this drug since Jan. 2008 and have not heard of people becoming resistant to it.  You can have an allergic reaction to any medication at any time.  The most common time is during the first round, but the staff administering the drug is always prepared.

    I hope this has helped answer your concerns/questions.  Best to you.

    Leslie

  • DTDG
    DTDG Member Posts: 12
    edited March 2017 #11
    What stage was your DLBCL

    Paella,

    I never comment on this, but my husband is fighing DLBCL Stage 4.  We actually go tomorrow to get results of all his scans to see if he is in remission after 8 cycles of R-EPOCH.  Just was wondering what stage was your DLBCL when you found out?  The doctor did mention to him once he was in remission, he would be a candiate for a stem cell transplant as well because he is at high risk for it to return. Just nervous about tomorrow and our future.

  • mrsspies
    mrsspies Member Posts: 3
    #12
    Rituxan maintenance after R-hyper cvad-araC

    Had chemo for a week every 28 days-for 6 months, then placed on Rituxan maintenance every other month for two years. With 3 more treatments to go, suddenly don't feel well for a week afterwards. Doctor says this is to be expected. Wondering if I should stop-are they beginning to damage organs?Being treated for mantle cell lymphoma

  • lindary
    lindary Member Posts: 711 Member
    edited March 2017 #13
    Rituxan

    My experience with Rituxan is this:

    6 cycles of R-chop which means I was getting Rituxan every 3 weeks. Last one was May 2015. 

    Rituxan only June 2015.

    3 cycles of RICE so Rituxan every 3 weeks. Last one Oct 2015.

    Rituxan early Nov 2015 and late Jan 2016. (Pre-SCT - then SCT cancelled)

    Official start of my Rituxan maintenance is March 2016, every 8 weeks. Technically I have been getting Rituxan on a regular basis for a little over 2 years. 

    I have not had any problems after a treatment except for being a little more tired for about a week afterwards. Except once. That time I felt foggy headed, more than just a little more tired and didn't fell like eating. That was the one time I didn't keep up on drinking water the 3 - 5 days after the treatment. Normally I will drink 1 - 2 liters of water for up to 5 days after the treatment but that week was veyr busy at work and I didn't do this. When I asked my chemo nurse about it she said the lack of flushing could have cuased my issues. Haven't had it happen since but I also make sure to drink my water. 

     

     

     

  • DTDG
    DTDG Member Posts: 12
    #14
    What kind of lymphoma

    Lindary what kind of lymphoma was you diagnosed  and the stage? just wondering about the RICE regimen as my husband has done 8 cycles of R-EPOCH and now the lympnodes are enlarged again. He is being treated for stage 4 DLBCL and has not been in remission yet.

  • lindary
    lindary Member Posts: 711 Member
    #15
    lymphoma

    I have follicular non-hodgkins and was told it was stage 4. If you haven't heard this before staging doesn't mean much with lyphoma. Six day before my second cycle of R-Chop I ended up in the ER with a perforated bowel. It was one of those good news-bad news things. Good news the enlarged node had shrunk quite a bit. Bad news, it had adhered to the bowel and tore a hole in it when it shrunk. So cycle 2 was delayed 3 weeks. I bring this up because I always wonder if things might have gone different if this had not happened. 

    Anyway so after 6th cycle the CT scan showed the node was still larger than what they felt it should be. That is when they decided to do the 3 cycles of RICE as a pre-treatment to get ready for SCT. 

    RICE was 3.5 days in the hospital. That is because 1 of the drugs takes 3 days to administer it. They monitor water intake, eating, basic vitals on a regular basis. Day & night, of course. For me I spent the day on my company laptop working. After supper I switched to my personal laptop for fun stuff. One thing I should have done, but didn't, was to make sure I was taking 15-20 mins walks 3- 4 times a day. With so much "relaxing" phusically I was weaker than I should have been each time I went back home. 

     

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