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Side Effects of Rituxan

lizalv
Posts: 4
Joined: Mar 2012

I am in remission of non hodkins B cell lymphoma. My oncologist has put me on rituxan for a maintenance plan of two years. Has anyone ever gone through this type of treatment? Could anyone share what kind of side effects you may have experienced, if any?

Thank you much. I am new to all this blogging etc.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I am also in remission. I was treated with R-CVP for 6 sessions.In remission since Oct.2010. I go for my 3rd R tomorrow. We are all different but I find it does wear me down for a couple of weeks afterwards. That is the only real side effect that I have noticed so far. What was your initial diagnoses stage and grade? John (FNHL-4-1A-5/10)

cbpgill26
Posts: 68
Joined: Mar 2012

Retuxin is an IV drug? I thought it was a pill?

allmost60's picture
allmost60
Posts: 3147
Joined: Jul 2010

Yes...mine is given by IV. I haven't heard anyone say they get Rituxan in a pill form. My infusion usually takes 2 1/2 to 3 hours from start to finish. They start it out slow and then slowly increase the drip. So far, so good for me...no re-action to the R during the infusion. I'm usually pretty tired after I come home due to the pre-meds given before the infusion, and then for a couple of weeks after I'm a bit more tired. I get mine every other month, so I think that might be why I'm not quite as energetic as I hoped to be.
Sue (FNHL-2-3A-6/10)

cbpgill26
Posts: 68
Joined: Mar 2012

I am so filled with anxiety. First Chemo on Monday! I am confused is the rituxin given along with regular treatments or separate? Port tomorrow. Dear Lord what a battle. Thanks for your reply. Hugs.

brdlegs's picture
brdlegs
Posts: 3
Joined: May 2012

Hang in there, Rituxan is a wonderful drug. I had 8 treatments one week apart, and it worked well and quickly. The Port will be very helpful no more poking you all the time. May I suggest taking relaxing music or movie to watch during your treatment. Use some visualization also, imagining the bad cells getting zapped and leaving your body forever. It is a battle, but God has promised to always be with us, He will not leave you or forsake you. HUGS to you.

bobmcghee's picture
bobmcghee
Posts: 43
Joined: Apr 2010

I am also in remission of non hodkins B cell lymphoma. Currently 5 down in the 2 year plan. Mostly resulted in some tiredness and a scratchy throat for a few days. After the last one in February I somehow got pleurisy. Onc said he doesn't think it was from the treatment. I wasn't sick but I started a fever that hung around a while. The main thing that bothers me since getting done with R-CHOP and getting my hair back is how thin my formerly thick hair is. I don't know if rituxan can inhibit hair growth but I am curious to see what happens after the next 3 treatments are done.

Take care.

WilliamC80
Posts: 2
Joined: Mar 2012

I am also in remmission from Lymphoma. My chemo has left me with my immune system reduced to near zero. Do you have the same problem?
Bill

allmost60's picture
allmost60
Posts: 3147
Joined: Jul 2010

Hi, and welcome to the group.
Quite a few of us have had, or are currently receiving the 2 year maint of Rituxan. I just finished round 7 of my two year plan on Feb 14th with another year to go.I get my infusion every other month. I never quite got my energy level back to where I'd like it to be. I finished my CVP-R first line chemo treatments a year ago December, and thought by now I'd have more energy, but it's only at about 60% from where it was before chemo. I feel a bit more tired for about 2 weeks after my R infusion and also experience some discomfort in my left hip and knees. I think the hip pain is caused from my BMB(bone marrow biopsy)that was done in June of 2010. My Onc had to go in my left hip 3 times in order to retrieve enough of a sample to send to pathology...terrible experience and very painful. I truely feel she either hit a nerve or did some permanent damage in that area. Also, I knowtice my hair has grown back thick and full and also grows quite fast between hair cuts. Other than that, I'd say my experience with Rituxan has been very favorable. Let us know how things progress with your treatments, and best wishes for a smooth ride. Take care...Sue

Folicular NHL-stage3-grade2-typeA-diagnosed June 2010-age 61 and considered stable.
CT scan scheduled for March 27th...been a year since my last one, so I'm anxious to see if all is well!

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

Hi Liz and welcome!

I am not on rituxan maintenance but it was part of my treatment
(R-EPOCH) for Diffuse Large B Cell Lymphoma (small intestine/mesentery).

I was very fortunate that I didn't have major side effects from my chemo
which completed in October 2011. My main reactions were the typical hair loss,
fatigue and a couple times I "flushed" a little bit. Oh, and I almost forgot
the constipation (vincristine) - how could I forget that! :)

I imagine you'll hear from another "Liz" here (current avatar
10 toes with smiles :)). She recently started Rituxan and has had
reactions to it but I think she's in a small percentage. Most reactions
to Rituxan occur during the first or second treatment and if that happens
is managed my tweaking and medications.

You are in good company here and you'll find a wealth of support.

Wishing you the best and keep us posted.

Hugs,

Jim

cbpgill26
Posts: 68
Joined: Mar 2012

Get back to me privately? I dont know how. Looking for you.

anliperez915's picture
anliperez915
Posts: 739
Joined: Sep 2011

Hi Lizalv, my dx is Splenic Marginal Zone Lymphoma stage 4, tumor in spleen, liver and bone marrow involvement. I had Rituxan treatment in Feb of this year, I did have some side effects but just keep in mind that everybody is different and you might not get the same side effects that I did. On my first treatment I had severe pain in my lower back down to my bottom, I actually had tell them to stop the treatment because I couldn't hack it! The Onc gave me some pretty good pain medicine that knocked me out lol! Second week I got a lovely rash all over my body (except on the face), Onc gave me some Prednisone for a week. Third week I got angioedema and by the fourth week I was just too tired. I dragged myself into the clinic just thanking God it was almost over. Hopefully you will be saved from the stuff that I got and be a normal person like everybody else here and just get the fatigue! I will be keeping you in my prayers and let us know how everything is going for you ok! Take care

Sincerely,
Liz

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Welcome I finished my rituxin for large B cell HNL last Sept. The only problem I had which was really horrible after every infusion was... how do I say this delicately I had terrible constipation the next day or so after and my husband had to give me a enema or sometimes, two for relief. Once the horrible episode was over I never had any other problems. During infusion my restless leg got worse .. My hair came back after chemo very curly. I had someone in my support group last night tell me his Dr. wants him to take rituxin for 5 years. I have never heard more than 2. I was told by Moffit in Tampa Fl that the rituxin gave me an 80% change of not getting the NHL for 7 to 9 years. I NEVER WANT IT BACK!!!!!!! I have been in remission since June 2009 and feel blessed every day!!

nonnie94526
Posts: 2
Joined: Apr 2012

My oncologist, who specializes in non hodgkins and spent the last 15 years researching
non hodgkins for Standord University Hospital says rituxan has only been proven effective for 2 years of treatment. She says additional rituxan can be very harmful to the kidneys and should never, never be taken for more than the two years. Please share this information with your support group.

Good luck to you.

miss maggie
Posts: 929
Joined: Mar 2010

Hello,

What I have learned on this site.

I only had Rituxan once weekly for 4 weeks in 2009. Right now I am in remission. My
oncologist did tell me if my NHL would ever return, she would treat me with Rituxan
again.

There are some of this site that are being treated with Rituxan for 2 years. I can
see why the cut-off is 2 years.

Thanks so much for your helpful news. Maggie

cbpgill26
Posts: 68
Joined: Mar 2012

Knowing nothing but my onocologist said retuxin was a two yr. drug and that was all that was safe?

nonnie94526
Posts: 2
Joined: Apr 2012

I was diagnosed with Non Hodgkin's Lymphoma in February of 1996, over 6 years ago. I had a bone marrow biopsy and was told I had Stage 4 B Cell Lymphoma. My oncologist suggested a two year program using rituxan. At the end of two years, we started the treatment plan all over again. In all, I was given rituxan for 4 1/2 years. I had not felt comfortable with my oncologist for a long time and went to Stanford for another opinion. I changed oncologists at that time and have been going to Stanford ever since. I truly believe my old oncologist was only concerned about making money. My new oncologist said I should have never been on rituxan for more than 2 years. She specializes in Non Hodgkin's lymphoma. I got very very lucky. Since changing, I have not been on any medications and I have had no problems. I see my oncologist every 6 months now for tests, blood work up, etc.

To answer your question, I had no problem with rituxan. I liked to have my treatment early in the morning so as to not use up any more of my day than I had to. My husband and I went out for lunch after every treatment. It never made me sick or made me feel bad. The worst part is sitting there for 4 hours. Just a little tired from the benadryl.

I guess I just want to say always, always, get a second opinion. If you have the right doctor he/she will encourage you to get that second opinion. If you feel uncomfortable with your doctor, get another one and believe me, being diagnosed with Stage 4 Non Hodgkin's Lymphoma is not a death sentence.

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

I guess it depends on how the doctor feels I guess, I too was stage 4 with bone involvement, and maintenance chemo was never on the table for NHL large B cell. So I don't know......

brdlegs's picture
brdlegs
Posts: 3
Joined: May 2012

Thank you for posting. I too was diagnosed with NHL stage 4 in Nov. of 2011. I had 8 treatments of Rituxan and will discuss maintenance therapy with Rituxan at my follow up appointment next Wednesday. I have Splenic Marginal Zone B cell. Thank you for the encouragement. What type of NHL did you have? Also, I have been told that I can never fully get rid of this, rather it can be kept in remission? Does that sound right?

tall floridian's picture
tall floridian
Posts: 86
Joined: Dec 2011

I have my 3rd chemo maintence this month with Rituxan. So far very little side effects other than being tired. I too am on a 2 year program with my cancer in remission thank God.

cbpgill26
Posts: 68
Joined: Mar 2012

Starting Chemo on Monday. Chops when does retuxin start? Is it along with the regular treatments are separate. I to am a floridian and tall. Best Wishes

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi cbpgill,

The Rituxan is given with the rest of your drugs (it's all in separate bags they're not mixed). Your infusion nurse should go over everything with you on Mon. There is usually a cocktail of drugs also given intravenously to curb any side effects, Bendadryl, Pepcid, and a steroid (usually Prednisone or Decadron) I also was given two Tylenol.

I have Follicular Non-Hodgkin and was treated with Rituxan only for two years, no "chemo". I had an allergic reaction the first time I was given the Rituxan, which I understand is common. It was explained to me that the cells die so fast that the body can't get rid of them at that pace, so they slowed down the drip and gave me Demoral which stopped it. Not to scare you, just to let you know they have it under control.

Most people have minimal side effects and it only happened to me the first time. The rest of the two years were uneventful.

Wishing you the best!
Cat

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Cat,
I am sure you don't remember,but you and Merrywinner were the first to respond to me about 2 years ago when I first posted. I know one thing,I was scared to death.Funny how we remember stuff like that,HuH? Most probably do remember who responded to them first as well. I guess that is the most important post at the time. John

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Oh yes John I remember your first post lol! You were so concerned about the statistics, boy have we come a long way!

I do remember my first post too, I think Merrywinner and Dixiegirl - Beth were the first responders for me. How funny that the term "first responder" seems to fit so well! I was definitely anxious about my treatment and they so helped me calm down. Wonder how they're all doing?

Ha ha I liked your "welcome wagon" title too in your other post, also seems to fit so well! If we only knew then what we know now right?
Cat

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Cat,
I also remember seeing your previous picture with the little girl and thought for the longest time it was your daughter. Then you said it was your grand daughter. Talking about looking young!!!. John

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Ha Ha! Thanks John!! It's amazing what you can do to photos nowadays! O believe me, I probably look a lot older in real person. (Hence the dark lighting lol) I certainly feel as though I have aged a ton in the last 3 years, thank goodness for Loreal!
Cat

Avantgardener's picture
Avantgardener
Posts: 31
Joined: Apr 2012

Good morning! I have the marginal zone B cell lymphoma, diagnosed on 4/13/12, and I had my first Rituxan infusion that same day. I'm scheduled to have it once per week for 4 sessions - I've had 3 so far, with the last one due this coming Friday. After that we'll see how things look; I might have more but not sure yet.

I've had almost no side effects from it and feel very well. Immediately after the infusions I get a slight headache and have a little bit of a "spacey" feeling and some tiredness. Tylenol takes care of the headache, and I find that if I lie down and rest for a couple of hours I'm OK afterwards. I've also had very mild chills right after the infusion, but it's very manageable, and again if I just lie down I'm OK pretty quickly. The very first session I had a low grade fever of about 100 degrees for maybe an hour, but that never happened again.

I'm not a medical professional, and this is based solely on my reading, but my understanding is this: Rituxan is not chemo in the way that most people think of it - it's a genetically engineered antibody that attaches to the CD20 protein that is on your body's B cells, which are a type of white blood cell that is part of your immune system. The antibody attaches to the protein like a key in a lock, and once that happens the B cells go to the spleen and are destroyed. It targets both healthy and malignant cells, the idea being that in time it will wipe out all of your B cells and your body's own stem cells will then make a new crop that is (hopefully) healthy. Rituxan also seems to have some beneficial effect on T cells, which isn't understood as well. Rituxan doesn't utilize the very toxic chemicals used in more traditional chemo treatments, such as CHOP. Since it works in such a different way, the side effects are minimal for most people, although in rare cases they can be very serious. You can read all about this on the Web, it's easy to find.

By now you must have at least started your treatments. How did it go? I hope you're feeling well and that it's working for you.

Best of luck, I will be thinking of you.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 996
Joined: May 2012

Based upon my limited reading, Avantgardner is exactly right regarding Rituxan, and how it works as a monoclonal antibody. My main side-effect with it was muscle pain and feeling like I had the flu most of the time. Have a device for checking your temp, since a normal temp essentially rules out flu. I required Loritabs, but there may be lesser ways of dealing with flu-like symptoms. I have read differing things about how long it can be amdinistered. It may be that since a maintenance routine is at a lower dose and frequency, that treatment can go longer, but I am not certain. Rituxan is also perscribed for rumatoid arthritis, but I am not sure of the FDA recommended duration. As I have written elsewhere, chemocare.com is an excellent source of info on all of the FDA approved chemo drugs used in the US. I hope you do very well with the treatment, and have no side effects. Max

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