Treatment with Rituximab

[Tac118]

What are the common side effects of this treatment. I will be starting with Rituximab treatment this week

[DriedSeaweed]

The main thing to watch out for is an infusion reaction to the first treatment. But the drug has been around a long time so your healthcare team should be pros at managing it.

For me Rituxan monotherapy caused my blood pressure to rocket up, burning sensation in face and ears, and what looked like a spotty sunburn..

BUT throttling the treatment with some steroids got rid of it all. Last 3 infusions a breeze.

So there can be complications. However, they should be able to handle it and get you sailing again.

[Tac118 in reply to DriedSeaweed]

Thank you so much your helped a lot. After reading about all the possible side effects I started to get worried

[DriedSeaweed in reply to Tac118]

It was a big deal when they were first trying the drug out. But if you have any issues these days your care team has probably seen it all and should know what to do.

Just speak up if something doesn't feel right. Don't be afraid to bother the staff if you feel off. Nip it in the bud!

Also, if you lock this post you may get more responses.

[Tac118 in reply to DriedSeaweed]

I will and thank you for the great advice

[AussieNeil Partner Administrator in reply to Tac118]

Here's how you lock your post to our community only: healthunlocked.com/cllsuppo...

[AussieNeil Partner Administrator]

Hi Tac, and welcome to our community.

While Rituximab monotherapy is used to treat CLL in the USA, there may well be better options for you. There are a few later generation versions of monoclonal CD-20 antibodies, with Obinutuzumab/Gazyva considered more effective. Ibrutinib monotherapy is far more commonly prescribed, plus it avoids the need for hospital visits.

Arranging for a second opinion may either find a much better option for you, or give you reassurance that this is your best treatment option, given your specific circumstances. Living in the USA, you may be eligible for a free, second opinion from a recognised CLL specialist through the excellent CLL Society's Expert Access program. See: cllsociety.org/cll-society-...

If you can provide more information in a reply and ideally update your profile, healthunlocked.com/profile/... then I expect you'll get some very helpful feedback from others in a similar situation to yourself.

Also, in just the last day or so, we had a post where Rituximab monotherapy was discussed, which I hope someone can find for you with more success than me.

Neil

[Tac118 in reply to AussieNeil]

Thank you for your reply regarding my personal status my blood work is stable but my lymph notes are enlarging very quickly and some are very painful I am also very fatigued with night sweats

[Jm954 Administrator in reply to Tac118]

The thing with Rituximab is that it will clear your blood and also a lot of CLL from your bone marrow but might not have much effect on your lymph nodes. I would ask your doctor the question about how it will help your symptoms, especially your large and painful nodes.

I had Rituximab and had a bit of reaction to the first dose which was a tingling feeling. It was stopped then started again. It's usually given over 2 days nice and slow, so be prepared to be there all day. I always felt very tired for a couple of days afterwards but that might have been down to the premeds to stop any reactions.

Best wishes, Jackie

[Tac118 in reply to Jm954]

Thank you for your reply and I will ask my Doctor about the effect on my lymph nodes

[SuzeJc in reply to Jm954]

Hi Jackie, does Rituximab not normally reduce lymph nodes? Not even small ones? I ask this because I've had four infusions over the past three weeks and my WBC has been gradually decreasing and my spleen is much smaller but the tiny nodes in my neck and under my arms haven't budged yet. I know it takes months to continue to work so I have a CT and review booked for a month so I'm hoping these will disappear soon. Thank you.

[Jm954 Administrator in reply to SuzeJc]

Rituximab does not clear the lymph nodes as well as it does the blood and bone marrow. The nodes are a refuge for the CLL cells where they remain and continue to proliferate meaning a treatment of some type will be needed again in the future.

Jackie

[gardening-girl]

Hello Tac, I don't recall that I had any side effects from rituximab. What I do remember is being totally unprepared for my reaction to the pretreatment infusion of Benadryl/diphenhydramine which just about knocked me out. I was working on my laptop when the infusion started and I sort of passed out and my computer slipped off of my lap onto the floor. It made a loud crashing sound and jerked me awake. It was shocking. No one had warned me that I might reach that way.

I now get the same Benadryl pretreatment with each IVIG infusion and I always warn the infusion nurses not to expect me to respond to anything that they say after the infusion has started. As the Benadryl is infused I can feel it slowly putting me to asleep. I feel it first in my hands which get heaver and heaver, then my arms relax and then.....who knows?.... I'm out.

Let us know how your first infusion goes. I'd love to hear if others have the same response to pretreatment Benadryl.

gardening-girl

[Tac118 in reply to gardening-girl]

Will do, I have never taken bendryl will be interesting Thank you for replying

[DriedSeaweed]

Did they say why they chose rituxan?

For me it was to treat autoimmune issue associated with CLL.

Are they adding anything to it?

Usually, CLL is not treated with rituxan alone.

People here are interested in your story. Curious.

[Tac118 in reply to DriedSeaweed]

They did not tell me why, my current situation is my blood work is stable but my lymph notes are enlarging quickly in my neck and some are painful, within the past month I have developed six very large nodes in my neck along with fatigue and night sweats. To the best of my knowledge there no other medicines added. I have had a recent biopsy on new node which confirmed CLL

[DriedSeaweed in reply to Tac118]

There is a lot of things you can learn about CLL on this site and cllsociety.org

If you can learn more about your treatment regimen others here can share more experience and tips with you.

It is worth the trouble fumbling through these things.

[Tac118 in reply to DriedSeaweed]

Thanks I plan to do that I am already learning so much

[GMa27]

What are your markers?

I had FCR. I don't know why you are just having Rituxin. Ask them.

I loved my IV Benadryl. Felt so relaxed on it! My port was great.

Make sure they administer it very slowly. Should take at least 4+ hours. Ask how long they expect it to be. I had no reactions from it. 💕

[cajunjeff]

I believe most people tolerate rituxumab very well. They start the infusion slow. If one doesn’t show any reaction, they start to speed it up. If a reaction appears, they dial it back.

My first two were quite easy, I sailed through them. My third one I got hives. They would stop the infusion, and then try to restart, which restarted very intolerable hives. I had to switch to ofatumumab, which I got through with zero problem.

But I think I am the exception, not the rule. Most people if they are going to have a reaction is on the first infusion, not the third. And most can work through any reaction. Not me though, I think it’s because I’m special.

Rituxumab monotherapy for Cll is not typical. As Neil wrote, if I was doing monotherapy with a monoclonal antibody, it would be Gazyva, not rituxumab.

[Tac118 in reply to cajunjeff]

Thanks for replying really appreciate your input

[morepork]

Just a generalised comment about Rituxan - I've been around CLL lists -I think it was the ACOR -CLL list - when rituximab was first used - hailed at the time as amazing - and in those older times, people's reactions to it were often labelled "Shake and Bake". I guess newer prophylaxis lessens those sorts of reactions. 😊

[jiffer]

I had Rituximab mono in May of 2019. It brought my counts down significantly and quickly. Besides the infusion reaction on the first day, everything went smoothly. My spleen was enlarged and one of the biggest changes was my new voracious appetite. My spleen has grown once again and my Doc wants to start Rituximab(3 infusions) again at the end of this month with a maintenance infusion every 90 days for possibly 2 years.

[JanChas]

I was treated with Rituximab and Chlorambucil. I don't think I had any side effects from the Rituximab other than bad fatigue but I think the Chlorambucil gave me more side effects with nausea, tiredness and just feeling unwell.

[PuppyMom]

I had a rare but severe reaction to Rituximab. They did pre-treat with Benadryl, anti nausea, Tylenol and a cocktail of other drugs but within 30 seconds of upping the Rituximab to next level my breathing became more and more difficult. The expert Hopkins staff immediately stopped Rituximab gave steroid and other drugs, waited several hours then very slowly began Rituximab again.

New protocol was to pretreat with steroid and other drugs that knocked me out for the day In order to get treatment in.

I also had a reaction after treatment I had very bad pain in chest, back, stomach, very similar to heart attach. After a visit to the emergency room that evening after treatment, the ER doctor said I had Gallstones that immediately needed to come out. He wanted to schedule surgery for that week! I called my Oncologist the next day to discuss what happened the previous night. He told me wait on gallbladder surgery, he felt it was a reaction to the Rituximab. The next month after my treatment they dosed me up with extra meds and I never had that problem again.

[Reg722]

I have been on Ritux for about 12 years in and off. The first infusion I had a slight reaction where I got red and some spotty marks. Benedryl helped right away. Since then nothing major . They pre medicate me with Tylenol and Benedryl prior to the infusion. The first infusion is usually longer .I am currently doing a 2 year regimen of rituxamab and I go by myself for my infusion . The only only side effects is I am tired by the time I get home. It’s usually a long day .

Good luck

[SuzeJc]

I just started Rituximab infusions three weeks ago. I was seen as high risk to have infusion reactions because I had a rather large spleen so I was prescribed steroids for a week beforehand and have been given steroids and antihistamine via IV before each infusion and it's gone really smoothly. Just a couple of minor reactions for minutes, nothing scary... you notifiy the nurses if you have any reaction and they stop the infusion and if necessary will give steroids/ medication to stop the reaction. Normally just stopping the infusion will ease the reaction. I was originally diagnosed with CLL and was rediagnosed with marginal zone lymphoma where Rituxan is standard practice as first line treatment. If I had CLL still though I would be pushing to talk discuss other treatment options (as there are far more approved options for CLL). There may be a good reason why they have recommended Rituxan first but always worth checking. Good luck.

[F550 in reply to SuzeJc]

I too was diagnosed with SLL/CLL. Too ibrutinib for a year, then got hypercalcemia and was hospitalized. New diagnosis of NMZL with 6 cycles of Bendamustine+ Rituxan. Now in remission.

Mike

[skunkbay53]

Ask to split the first infusion into 2 days...Slower the better...my husband got a fever after each infusion..He felt tired. But the combination of Ritixun and oral Calquence helped and he now is in a form of remission!

[Tac118 in reply to skunkbay53]

Glad to hear about the remission

[17Pisme]

I have had 12 infusions with Rituxin & never an issue. Boredom was the worst part of the experience since it's a 4 hour ordeal. Bring plenty of reading material & enjoy the nap.

[Tac118 in reply to 17Pisme]

Thank you for the reply

[-Sparky-]

I was given Rituxin in conjunction with bendamustine. Doctor forgot to give me a prescription for dexamethazone starting two days prior. Was to be a five hour infusion but was stopped after 10 minutes. I was in extreme pain and apparently almost needed CPR. Something was administered and I came around about 20-25 minutes later. That afternoon I was fine, however they chose not to give me Neulasta after that. Three weeks later I was hospitalized with what was an infection but after several IV antibiotics and several days for the cultures to come back negative they gave me a blood transfusion. And that turned me around. I believe they felt that I had neutropenia, I'm not sure. But my oncologist admitted that not getting the Neulasta is what caused the problem.

[jcb98311]

Everybody has already answered pretty thoroughly, but I will give you my experiences. I have both CLL and Waldenstroms (WM) (a non-Hodgkins lymphoma). I was started on ibrutinib and 8 infusion sessions of rituximab for the WM. I was told to not take my blood pressure meds the morning of the first infusion due to the possibility of the infusion lowering my blood pressure, but bring them along to take later. Did not happen.

The first session took the following times:

- 30 minutes for the tylenol and benedryl (which lets me sleep through the time).

- 3-4 hours for the infusion itself

- another 30 minutes for checking vitals and making sure no issues before being allowed to leave (by myself)

Fortunately, I had no reaction whatsoever to the rituximab, so all the following (7 more weekly at that time) infusion sessions were in rapid mode done in 1.5 hours for the infusion itself instead of 3-4 hours.

Just had another 4 infusions in July, which is apparently the protocol for WM. All my blood work is back to normal range, even though recent bone marrow biopsy still shows 70% involvement (down from 90%).

[LenfromSoCal]

After 8 1/2 years of being on watch and wait, I was exhibiting symptoms such as an enlarged spleen, fatigue, and night sweats which prompted my CLL specialist to initiate treatment. (a very scary proposition at the time)! I did not, however have any enlarged of painful lymph nodes

My initial treatment plan called for infusions of Obinituzimab (Gazyva) in concert with a later addition Ibrutinib). On the first day of the Gazyva infusion, I was exhibiting signs of bradycardia where my heart rate became very erratic dropping down as low as 26bpm! After the first day, I was taken off of Gazyva. I had never had any previous heat problems, and my heart rate normalized after a few hours away from the drug . My treatment plan was revised utilizing Rituximab as a mono therapy to see how I react. The Ibrutinib was also not recommended because of the potential for Atrial Fibrulation.

Except for the medications that are given prior to the infusion to mitigate any infusion reactions, which can typically tire you out , I did not have any negative reactions from the Rituximab. and I have been on a maintenance regime of Rituxan every 3 months for over 2 years now, and the rapid infusion of this drug takes about an hour and half.

Everone's CLL and body reacts differently. For me, my CLL exhibits a strong expression of CD20 antigen, and the Rituxan has been very effective.. In my last visit/infusion in June, my CLL specialist said my labs look "near perfect". I love hearing that! As stated here by many, there are a lot of newer medications available to us, and we are all hopeful that we will continue to be blessed with treatments that will eventually eradicate the disease from our bodies. Sorry about the long dissertation, but the point that I want to make is that Rituximab has been around for nearly 20 years and is largely well tolerated. My best to you, and please feel free to contact me if you have any questions.

[Tac118 in reply to LenfromSoCal]

Thank you your reply the information you provided was very helpful, my best to you

[Mik_]

Hi Tac118,

I am not sure if asked about Rituxan mono-therapy. I have a couple months mono-therapy about 8 years ago. There was not any major side effect. I remember the headache, bad taste especially during infusion, some skin irritation and slight thermal deregulation. Everything was in expected range. Everything was gone in about 3-4 weeks after. Just remember they used mice genes that close to humans, so don't be very suspicious, you will smell rats :). It is not nice, however, compared to any chemotherapy the side effects are very minor.

The main issue to set up proper speed of infusion to avoid vomiting and body rejection, especially first time. Report nurse if you feel uncomfortable.

[Hidden]

During the 1st infusion, a reaction is possible. Uncontrolled shaking, shattering, but stay calm. It will pass. Your 1st infusion is usually the longest, mine last approx 7 hrs.

The usually add something to the infusion that makes you sleepy, so take a nap.

The night after the 1st infusion, extreme nausea, high fever, & sweating is common. This will pass.

In subsequent infusions, these are less likely. Also, they should gradually get shorter.

That being said, I usually felt like my old self for a few days following an infusion. Clear thoughts, energetic.

Enjoy it!

[Scentifolia]

So many people replying here seem to have very little or no problem with Rituximab, and I hope the same will be true for you. However, do be alert for reactions, and let your nurse know straight away if anything feels unusual. I was hospitalised for several days after my first infusion - my heart rate and temperature rocketed and my blood pressure plummeted. I kept having a pre-anaphylactic reaction - my throat and palate would swell and become numb, so they had to keep stopping, giving me more paracetamol and anti-histamine, and restarting. I also had extreme pain in my pelvis, with back spasms - never had that before or since thankfully. I have now had four infusions as part of monthly FCR treatments, and I really hate having it. They now give it to me very slowly, so each infusion takes at least 8 or 9 hours, and it seems like a very long day. I always feel thoroughly wretched and sick after it, but also, very oddly, ravenously hungry. I hope I am just the exception to the general rule of good tolerance, but do be alert to any reactions. I hope you’ll be fine - good luck!

Rose