Rituximab

Hi  and welcome to the Online Community, although I am sorry to see you finding us.

I am Mike Thehighlander and yes, I have had this treatment along with a lot of others. 

I did ok with it, but I also had the other chemos along with it. The main issue I experienced was the ever increasing fatigue over the 6 cycles but some simple activity did help this a lot. It is important to drink lots of water as this helps protect your kidneys and you will be pleased to know I was never sick :) 

It would be good to get to know more about you and you could do this by take a little time and fill in some information about yourself and the journey that brought you to us. You can do this by completing your profile it really does help the Community members to help you and get to know you. 

Click on your username and that will take you to your homepage. Look for ‘Edit my Profile’ click on it and start to tell us as much or as little about yourself as you want then click on save before closing the page. 

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You will have lots of questions so please post them.

Hello misspositive,

I received 8 infusions of it (along with some other drugs) last year.  It caused me less problems than most of the other drugs.  They would give me a Benadryl injection first which made me almost unable to keep my eyes open (although I didn't necessarily sleep).  I would say the first 4 treatments or so I didn't really have any side effects.  It was just a drag sitting there for 5-6 hours while it went in.  In the later infusions I started getting a bit nauseous during the infusion.  I think part of it was probably mental.  The first few times I went they would offer you turkey sandwiches during the infusion, which I typically ate with no problems. The last few I had no desire for them.  In fact, it took a couple of months after the chemo for me to want to eat a turkey sandwich again.  But, all in all, it was a small price to pay for the results.  Rituximab was a lot more tolerable for me than some of the other drugs. As with all this stuff, ymmv.

Regards,

bkc

p.s. I found this website to be very helpful with info on chemo drugs and their possible side effects - link

Hi Misspositive

I had Rituximab every two months for two years, following my R-Chop and it was fine, although I did suffer with fatigue throughout.  

When I had it initially, as part of my R-Chop (the "R"), I went very breathless and my heart started beating very fast, so they stopped the R and re-started it again very slowly.  Because of this it look a lot longer to administer, but I was fine.

Jan x

Hi again , some great info from the folks.

I just checked my treatment protocols and I had Rituximab over 96+ hrs x 6 cycles :( but the other drugs I was having had all to be infused slowly, so I had to have 5 days/nights in hospital for all of my cycles.

We are always around to help.

Hi, have your team talked about possible reactions to the drug when it's administered? 50% react and the other half don't, reactions can include - feeling itchy, hives, sore throat or feeling like your throat is narrowing. If you experience any of these tell the nurse straight away as they can be managed and it just means they slow the drip infusion down. I was in the half that reacted and it just meant my treatments took longer.

Fatigue seems to be the other side effect that people report, but again it varies from person to person, take a book, magazine or film to watch as it can take a while.

John  

Hi - I hd this for 6 cycles of R-EPOCH and this was the thing I was most apprehensive about after reading the literature. I had no issues although the team treating me delivered it very slowly initially to check for any Ill effects, I was fine and they speeded it up each cycle bit always keeping a very close eye on me. If you are nervous ask for sometime to stay with you or for easy access, they will understand. Good luck x 

Hi , even though you joined to Community a while back a welcome to you. I also see that you had R-EPOCH and well done getting through the marathon treatment.

It would be very helpful if you could put something into your profile as this does help others when replying to you, but more importantly those looking for support and information as they can read a bit about the journey you and your family are on.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my cancer journey was rather long.

All the best.

I read somewhere that they have a synthetic version of this immunotherapy drug now which is not from rhodents anymore so it causes less reactions  IV administered. Not sure if it goes under a different name or the same....When I was getting my first infusion had also some hives and the nurses panicked so they pumped me full of steroids and stuff also made my hear race, the nurse did not even dare to write down into the report/they could not measure the heart rate.

definitely better than chemo, but you still go to the same place to get it. Still wondering how many people from the waiting rooms back then are still alive, years after...

It can have short term or long term side effects, they gave me loads of disclaimers to sign too. Currently on under skin injection maintenance therapy which is the same drug but they give it to you under the skin in a lot higher dose but it lasts a month or so but lot faster to administer, you have to have a successful IV before first.

It it was amazing to see when it started homing on the cancer, the hives started where I had the skin lesions, and it seems it worked too. Good luck to you

Hi RareC I think the drug you are referring to is Obinutuzumab and is starting to be used in the UK now some people in the FNHL group are currently receiving it. 

John