Having a six to seven hour infusion of Rituxan... - CLL Support

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Having a six to seven hour infusion of Rituxan and something else tomorrow.

RemingtonSteele profile image
13 Replies

I'm looking for suggestions as I'll be at the clinic that long and this is my first time getting treatment. I don't know if I can take a laptop, books, if I'll be able to write, or if I will even feel like doing anything except moaning the whole time.

Also, if anyone has any experience to the first time, I'm curious. I know what to expect (chills, uncontrollable shaking, etc.) from the consultation. I guess a personal experience just kind of helps.

Thanks,

Randy

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RemingtonSteele profile image
RemingtonSteele
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Cllcanada profile image
CllcanadaTop Poster CURE Hero

I have had 12 infusions of rituxan... the first infusion took 4 hours and I experienced rigors [shaking] for about an hour about 12 hours later, which is very unusual...

The premeds will probably make you drowsy and want to nap... but I used an iPad with ear buds to listen to music...

I'm surprised you don't know what other drug you are getting. You should have been given a treatment package, you should read it all completely... it contains valuable information on your treatment and perhaps side effects. When to call your oncologist etc.

Good luck tomorrow the uncertainty is far worse than the actual event. If you have ANY weird feelings notify the oncology nurses immediately!! They are there to help and want to know how you are doing...

Pack a lunch and bring bottled water...hydration is extremely important

chd

RemingtonSteele profile image
RemingtonSteele in reply toCllcanada

I do know, well the paperwork was at home but we went through it and had all my questions about it answered. Bottled water. Good idea! I had not thought about things like that. They never mentioned it either.

jangreen profile image
jangreen

Hi some people cope well with possibly long hours spent in the chemo room but I found it wiped me out. I always hoped for the day to go without a hitch but sometimes real life comes into play. Try to be as calm as possble as I think this helps. Good luck

Oleboyredw-uk profile image
Oleboyredw-uk

My reply might be too late for you, so sorry if so. I took laptop, ipad and book with me, so I could do a bit of work watch some video ad read. Same for each retuximab session. I also took headphones so I didn't disturb anyone else (unlike one person).

Rob

RemingtonSteele profile image
RemingtonSteele in reply toOleboyredw-uk

It isn't too late yet. I'm in the eastern time zone so I have about two hours before I check in. I'll call when they open and see if I can bring the laptop with me. I will have to keep in mind to bring the headphones. I also have some books on a subject I wouldn't mind getting a refresher course.

Yesterday my second time Rituximab.

no trouble at all.

First time also.

I know all kind of trouble is possible, but most people have not. Rituximab is mostly no problem.

Before the first time I also read all possible problems, but I had none, happily!!

During the long time infuse, you can do what you want: read, listen, tablet, laptop and so on. Or simply rest.

All the best to you!

RemingtonSteele profile image
RemingtonSteele in reply to

Just in case, they prescribed Demerol so I'll be taking that with me in a couple of hours. It seems kind of surreal. I was so used to going every three months and staying on the watch-and-wait and this time I'm going to start chemo. It's finally starting to sink in and it is a little scary for some reason I haven't figured out. Maybe it is because the dreaded word "cancer" and the combatant word "chemotherapy" combined.

I'm going to call when they open in about an hour and a half to see if I can bring my laptop. I hope so. I enjoy programming and it is my profession and hobby so it will keep me occupied. If nothing else, I have some books on a subject I wouldn't mind a refresher course.

RemingtonSteele profile image
RemingtonSteele

I wanted to thank everyone. I read every reply and I got more than I expected. This is a wonderful community and I've taken everything to heart. I am a little scared as "zero hour" approaches. To read that so many had no trouble with it is encouraging.

I also know that I am in good hands at the clinic. My doctor is one of the best in the profession in the Atlanta area. He's got a calm reassuring nature about him. There is one phlebotomy nurse who I guess was having a bad day but that was a year ago. The rest of the time, they have been friendly and helpful.

Ugh, it's 6:30 AM. I'm going to find a video and see if I can take my mind off of this a little.

Cheers everyone and thanks again. I'll let you know how I fare this evening.

buckinhard profile image
buckinhard in reply toRemingtonSteele

I haven't had any experience with treatments but I want you and everyone to know when you're getting the infusions, you have all of us right there with you !! Nobody is alone, we are thinking of you and you're in our prayers.

Haileybury profile image
Haileybury

Had my first Rituximab (Rituxan) IV last week. It was no trouble for me and NO REACTIONS during or after. I'm 75. You will be fine. Good luck.

David

By the way, my subsequent blood results show a huge improvement.

RemingtonSteele profile image
RemingtonSteele

They've started the infusion. I've had a couple, maybe three pre-meds and something has already made me groggy before hand. So far, nothing has happened but the nurse has told me to let them know if I experience any itching. I think I'm going to power down and get some sleep. Something has made my reaction times and brain groggy. I'm mistyping a lot and backspacing.

SusanBo profile image
SusanBo

Bring it all as well as something to eat - it's long and boring, barring no adverse effects. The infusion is long and slow for your own safety. It seems to go on forever - it helps to take the pre-meds - they help you get some sleep while infusing. Good luck - hope it works as well for you as it did for us.

RemingtonSteele profile image
RemingtonSteele

I got home a little over three hours ago. They had juice and coffee and I hardly have an appetite anyway so I didn't get hungry. But I will take some bottles in the future for the next long one in a month. Tomorrow I have an appointment for an hour's infusion. The IV plug is still in my hand which hurts when I twist it.

Right now, my stomach feels a little acidity and I'm kind of warm all over and tired. I got up from a nap an hour ago thanks to the phone ringing. I'll be getting a light soda from downstairs I think to see if the fizz will help it feel better.

I'm tired. It's 8:38 PM now and I've slept so much during the treatment but I can sleep some more. I'm going to grab a drink and watch a couple of videos and sleep.

Thanks everyone, you are all so encouraging.

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