Rituximab concerns

Early hours of the morning and I can't sleep. I start FLair trial Monday morning with FCR arm. Have a chest infection but taking antibiotics so will hopefully go ahead, I can't do another week of waiting!! At my recent appt. with oncologist she told me that I would start with just the chemo tablets as my white count was high and needed to bring down below 100 before rituximab infusion. I had appt. Tuesday and she told me that due to trial protocol I have to start chemo and rituximab at same time so going ahead Monday. I am really worried as she is talking about dripping it into me to monitor reaction, so now of course I am expecting a terrible reaction but what sort I don't know. There must have been a reason for her earlier concerns? Also will it go ahead if my chest doesn't clear up?

Sally (U.K.)

25 Replies

oldestnewest
  • Sally - Are you going to take allopurinol to protect the kidneys from Tumor Lysis Syndrome (rapid die off of cells)? I would ask about that. I got it the first time I got rituxan, but not the next two times or with Gazyva. They can infuse rituxan VERY slowly if necessary. My first infusion was split over two days. Ask if that is possible also. I had no reaction to rituxan the three times I was treated with it.

    Just be sure to tell your infusion nurse if you even think ANYTHING is slightly off, even an itchy ear. They can usually adjust premeds and slow the infusion to avoid a full blown reaction if they have a heads up. Drink LOTS of water before, during, and after your infusion to flush the rituxan and dying cells out of your system.

    If you are still really concerned, talk to your doctor this week and ask your questions. I think that in the UK you would get FCR if you weren't in the trial. Since that's the trial arm you got, if you really don't feel comfortable starting the trial Monday, you aren't required to participate in it. You could just go with FCR when you and your doctor feel you are ready to start treatment.

  • Hi Pkenn

    I started allopurinol last night Wednesday and I am having infusion over two days. I will make sure I drink lots of water and be on the look out for any reaction, my daughter is coming with me so she will be on alert. I had already considered delaying due to chest infection as I realise FCR is standard treatment so will see how I feel Monday.

    Thank you for your reassuring comments.

  • Everybody has Rituximab dripped into them the first time as it is well known to cause a reaction. These are totally manageable. The reaction can be scary so tell the nurse if you feel unwell in any way.

    They will give you antihistamine and steroid and saline before you start to help stop any reaction. Me, I had a grade 4 reaction. Still here and in remission.

    Rituximab causes this reaction in some because it is so good at its job. Your lympocycte count will drop dramatically.

    You can do it. It will make you better.

  • Thanks devonrr, you're right, I can do it.

  • It's understandable Sally that everything is going through your mind. I think a lot of us can relate.

    The chemotherapy nurses are very experienced and know exactly what to do if you do experience a reaction. Not everyone does. They do rely on you to let them know about anything unusual however trivial you think. Spread over two days and infused slowly is a good way to start. It's a scary thing for anyone to actually start treatment let alone go through and get through, but we do as evidenced by some of the posts

    On here.

    Good luck for Monday, as long as you are better of course. I'm sure you'll do well.

    My best wishes are sent.

    Sue

    Forgot to say take something to do, read or tablet.

    Something to eat maybe and drink. The hanging around can be a bit tedious at times!

  • Hi Sally,

    The first dose of Rituximab is a relatively small one compared to the normal dosages. It will be dripped into you very slowly over several hours in order to monitor for any signs of reaction. After around the first hour, if everything is ok the drip rate will be increased in increments. You will be given pre-meds of anti-histamine, steroids and paracetamol.

    At the end of my trial dose of Rituximab I developed severe shaking. I immediately called a nurse as directed and was quickly given additional drugs to bring it under control.

    I had to go back the following day for a full dose of Rituximab. Fearing the worst, I was very apprehensive. This time I was given a double dose of anti-histamine and the drip rate was very slowly increased over a period of about 6 hours. Much to my relief, I had no adverse reaction at all other than feeling drowsy from the anti-histamine.

    On subsequent rounds of FCR, I had normal doseages of pre-meds and the Rituximab was started off very slowly gradually increasing. I completed 5 rounds of FCR without any further problems related to Rituximab. The chemo nurses are well experienced in dealing with adverse reactions and will be checking on you every 15 mins at the start. You have no need to be afraid, easily said but true!

    Hope everything goes well.

  • I did not get steroids with rituxan, just tylenol and IV Benadryl (loopy time). I really did not have any reaction and was at work (teaching third graders) the next day.

  • Just like the disease everyone is different. Lucky you. But you missed the steriods and their reaction well known as "ants in the pants". Those few seconds of tingling in the nether regions. Strange but funny.

  • Something to look forward to!

  • So sorry I missed that! LOL! I did get steroids with Gazyva more recently and had no reaction at all, including the desire to clean my house from top to bottom. I was hoping for that one. I often have opposite reactions to drugs, and have run into my share of doctors who must have slept through the lecture about patients like me. A couple have actually told me that it is impossible for codine related meds to make me hyper. I guess I was just imagining the 48 hours of being totally wired that just one pill gives me. Gaubapentin, Tramadol, also high on my one pill was enough for a lifetime list.

  • I am on Flair and was randomised to FCR, which I started last April. I'd advise that you stay on the trial no matter what, as I believe the trial runs more tests than the standard NHS protocol would pay for, so your consultant has more info to play with. Having a trial nurse is like having a coach available to you whenever you need it.

    Rituximab was always an infusion for me. My blood counts beforehand meant they planned to give it to me over 2 days for cycle 1. I got a reaction within 15 mins, told the team immediately and they just took over and dealt with it - no fuss, no danger to me and routine for them.

    After a 15 minute wait (and another anti-histamine through IV, I think...) they turned me back on at a much slower rate and it went in without any further problems whatsoever. After that I had no issues with Ritux for the rest of my chemo period and they increased the speed every time.

    Go with the flow. I was lucky enough to get MRD negative at the end. Good luck on Monday!

  • Thank you, I will go with trial as I understand I may get more tests and nurse on hand.

  • Hi Sally

    It's all been said by our helpful folks who have been there, I haven't.

    So I just want to say good luck with the treatment and look forward to feeling well again. Do keep in touch when you feel up to it.

    Best wishes

    Bubnjay1

  • Thank you yes I will keep you posted. Just saying out loud on here really helps with anxieties as there is always someone to give good advice having been through the same experience.

  • Sally

    You have been given details re Rituximab infusions in some cases like mine an overnight stay in hospital was standard for the first Rituximab infusion and it was given in two sessions and monitored.

    I was surprised that you medic said originally that Rituximab would not be given with the FC arm because Rituximab targets the B cells and most of us have counts well above 100 when we start treatment.

    Anyway you will be monitored closely.

    Best wishes

    Geoff

  • Thanks Geoff, the research nurse said she was surprised as well and had to point out to consultant that she wasn't following protocol.

  • Please don't worry, it will be fine.

    My experience with a wbc of more than 600 was ok. I had the steriods, antihistamine and paracetemol as premeds then a small dose of R very, very slowly over several hours on the first day with it all repeated, and the rest of the dose, on the next day. I didn't have any reaction but it is important if you feel strange in any way to let the staff know. The premeds will make you feel a bit dopey and sleepy so try to stay awake for the first couple of infusions.

    You'll be there quite a while so I would take some nice little snacks with you, grapes are perfect if you like them, a drink you like and something easy to read. The staff will probably come round with tea/coffee but might not be as you like it (lukewarm) and food is a bit hit and miss on these units in the NHS.

    All the best, let us know how it all goes.

  • Thank you for the advice I feel a lot better about it now. I will be armed with my kindle reading Peter James and drinks and snacks, I've experienced the hospital food before!!

  • I had only the fludarabine and the cytoxin infusions for the first round as my oncologist was concerned about tumor load. I did not have a high WBC, but I had very infiltrated bone marrow, an enlarged spleen, and enlarged lymph nodes. I was also taking two tablets of allopurinol per day as well. I didn't have any problems. For the next round of FCR, I received the Rituximab slowly but had no problems. By my last round two weeks ago, I received rapid Rituximab (one hour infusion) and I was fine.

    Can you get another opinion about the Rituximab and tumor load? It seems like study protocols should be flexible. After all, there can be delays in receiving FCR due to low white blood cells counts. Many oncologists have to tweak schedules and dosing due to the patient's tolerance of a specific drug.

    Good luck with your treatment. As other people have posted, the infusion nurses are highly trained in administering Rituximab.

  • I am in the US. Diagnosed 5+ years ago and began FCR in November. Monday will be day 1 of round 5 of 6 planned rounds. Will second what many others have said - try not to worry about the Rituxan. Yes, you might have some reaction the first time but the infusion nurses know what to do - just keep them informed of ANY change you notice - for me it was a headache and chills. They stopped the infusion, adjusted pre-med and restarted at a slower rate with no problems. Had no reaction on subsequent rounds. In my case I am fortunate that response has been great with really no side effects other than feeling really crappy on the 2 days following my last infusion each round. Best of luck to you.

  • I've just finished FCR on Flair trial. I had a white blood count over 100 and they gave me the Rituximab over 2 days via drip. I had no problems at all with it. I just felt sleepy and normally had a nice snooze. They gave me the chemotherapy at the same time. There was such a difference after even one round to the nodes in my neck and after a couple of weeks I felt lighter and brighter. Amazing. Go for it! The only problem I had was nausea with the chemo tablets but now that I'm finished it was all worth it.

  • I have completed the FCR protocol (6 months of treatment) a year and half ago and I believe can be very helpful to you with a bunch of information. I live in Florida and if you feel you'd like to talk privately possibly via email I would love to try to help you in the beginning of your process. (email address deleted - Admin) My name is John

    For your own security never disclose your email address in posts/replies on any Internet site. You are likely to attract spammers. Members are recommended to contact each other safely via this site's Private Message facility.

    Sending and receiving Private Messages: support.healthunlocked.com/...

    Viewing Private Messages: support.healthunlocked.com/...

    - Admin

  • Good luck and stay strong.

    Onwards and upwards

    Mike

  • Very best of wishes to you. I do hope that the chest clears up.

    Peggy

  • First round of rituxan began at 1:30 pm , wrapped up 2:30 am ... 13 hours. Side effects: fever, chills, nausea and dropping blood pressure. I had about 18 more rounds of rituxan with no adverse reactions and usually complete in about 3 hours.

    I had rituxan weekly for 5 weeks, initially. I ran low grade fever during the evenings, had varying night sweats, and lots of fatigue during those first 5 weeks. Oh, and I lost about 18 lbs. I was on rituxan & revlimid.

    I am now at 3 years on ibrutinib for SLL and doing fine.

    LynnB

You may also like...