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View Full Version : Rituxan tomorrow - any tips?



ScreaminMeanie
04-29-2011, 04:01 AM
My doc says no changes in medications, etc., no restrictions on eating, drinking, etc. Nothing was said by either the infusion center or my doc about driving there and back, and I forgot to ask! :rolleyes1:

Will I be okay to drive there and back, or should I get a ride? Any other tips? I plan to take my cell phone and a couple of books (I read fast) for something to do.

tomntexas
04-29-2011, 06:16 AM
I never had any issues with Rituxin and driving, working, etc was not a problem for me

ScreaminMeanie
04-29-2011, 06:38 AM
OK, good. I was worried about the benadryl making me woozy. I guess they keep you until you're not woozy anymore?

tomntexas
04-29-2011, 06:56 AM
The benadryl never bothered me, but then I took it for years for allergies, so maybe somewhat immune to it. I would think after the rituxin treatment, which was always 3 hours or so for me, that if you felt woosy or whatever just hang around. Each person reacts differently so good you are sensitive and aware of this.

Sangye
04-29-2011, 07:06 AM
Have someone drive you since you don't know how you'll react to either the benadryl or the rtx. The benadryl usually conks me out pretty well only for a few hours but then I'm awake on the way home. But one time it didn't wear off at all and I couldn't stay awake at all for the entire 1.5 hr drive home. "Luckily" the rtx weakens me so badly I already had a driver in place.

ScreaminMeanie
04-29-2011, 07:45 AM
This is exactly what I needed to know. I've got hubby lined up to drop me off and pick me up tomorrow, but I'm hoping that for the subsequent (shorter) visits, I'll be able to drive myself so as not to screw up his work day so badly. (He works 30 miles away from the hospital, in the opposite direction from where we live.)

ArlaMo
04-29-2011, 11:11 AM
I drove myself, to and from, both times. Benadryl doesn't do much to me. I did line hubby up to bring me lunch so I wouldn't have to eat hospital food :tongue1: (was there from 9 until about 2:30.) The cancer center had wifi, so I just brought my laptop and a book to read. My mom came to visit a bit the second time while my little guy was at preschool. Definitely have something to occupy your time.

ScreaminMeanie
04-29-2011, 11:39 AM
Food is the one thing I didn't think about. I know there's a coffee shop/snack bar there, but are you hooked to a machine? Are you able to move around much? If not, I'll just have to wait until I get home to eat. The preds are not going to like that! LOL

ArlaMo
04-29-2011, 12:24 PM
I had a rolling IV. Mine could unplug from the wall for brief periods of time (bathroom, etc.) but I didn't really see anybody doing more than that. Most of the people there were doing chemo - lots of them were asleep!

me2
04-29-2011, 12:38 PM
I had the rolling IV also. Definately figure out the food thing. Where I go , if they keep you more than 4 hours they have to let you order from the cafeteria and they bring it to the room. Good food actually.
Usually I was there just under 4 hours so I ate from snacks that I brought.
For me, the benadryl just made me sleepy for about an hour and then wore off. I drove myself home the two hour drive each time. Ideally though I would think it best to have someone else drive the first time if possible.

Sangye
04-29-2011, 12:52 PM
I doubt that they'll let you go wandering around looking for food. You need to be supervised during these infusions, even if you've had lots of them.

Best of luck to you tomorrow. I hope it goes well and you feel better quickly. :smile1:

pberggren1
04-29-2011, 01:39 PM
If I ever get approved for rtx I think I will just do my infusions at home, lol. I already have a PICC line, pump, and pole and all neccessary supplies, so why not.

ScreaminMeanie
04-29-2011, 11:18 PM
That'll certainly make getting food easier, Phil! LOL

Well, I totally messed up on food. There's nothing at home portable that I can take with me, and there's no time before my appt. this morning to stop on the way there (since I'm riding w/hubby and he's already having to get up earlier than usual). Hopefully I can raid the snack bar or a vending machine before I check in!

Sangye
04-30-2011, 12:14 AM
Phil, doing it at home is not an option. The reason you have to go to an infusion center is that you have to be monitored during the entire infusion. Allergic reactions can be very serious and have to be addressed immediately.

pberggren1
04-30-2011, 02:17 AM
Phil, doing it at home is not an option. The reason you have to go to an infusion center is that you have to be monitored during the entire infusion. Allergic reactions can be very serious and have to be addressed immediately.

I know Sangye. I was just kidding.

delorisdoe
04-30-2011, 03:04 AM
I am begining to learn that nobody gets canadian sarcasm quite like another canadian.

pberggren1
04-30-2011, 04:57 AM
I think you are right there leigh. My sense of humour can be quite sarcastic and dry and totally off the wall.

drz
04-30-2011, 07:10 AM
If I ever get approved for rtx I think I will just do my infusions at home, lol. I already have a PICC line, pump, and pole and all neccessary supplies, so why not.
You will need to have nurse there to montor you and equipment to treat any serious reactions. It is usually easier and safer to do it at a hospital or clinic set up for infusion work.

They also usually have lots snacks available and option to order from the cafeteria if you want but unless it runs over my usual meal time and I need to eat to keep my blood glucose up, I seldom ate much during a transfusion or IV treatment.

How long have you had the PICC line in? They were always in a hurry to take mine out or change it after a few days due to risk of infection. I did get MRSA infection once on my line and that was a pain and complicated my treatment.

pberggren1
04-30-2011, 07:14 AM
You will need to have nurse there to montor you and equipment to treat any serious reactions. It is usually easier and safer to do it at a hospital or clinic set up for infusion work.

They also usually have lots snacks available and option to order from the cafeteria if you want but unless it runs over my usual meal time and I need to eat to keep my blood glucose up, I seldom ate much during a transfusion or IV treatment.

How long have you had the PICC line in? They were always in a hurry to take mine out or change it after a few days due to risk of infection. I did get MRSA infection once on my line and that was a pain and complicated my treatment.

I was just joking about doing at home. I have had the PICC line in for over 8 months now.

drz
04-30-2011, 07:54 AM
I was just joking about doing at home. I have had the PICC line in for over 8 months now.

Glad to hear that. That must be a record for having a PICC line in with out infections?

pberggren1
04-30-2011, 07:59 AM
Glad to hear that. That must be a record for having a PICC line in with out infections?

Hard to say. I have to have mine restitched on Tuesday.

ScreaminMeanie
04-30-2011, 10:25 AM
The food turned out not to be a problem - they ordered a lunch for me, which I devoured. Pretty good food there.

At one point I felt like I my throat was closing up a bit, so they stopped, called my doc, then gave me another benadryl and started me back slowly. By the end they had it up to 150 mg/hour, but I ended up being hooked up to the IV for 6 1/2 hours. Didn't help that the IV kept occluding at my end - the needle was in the side of my wrist below my thumb. Next week we'll definitely pick a different site for the IV.

In retrospect, I don't think I was really having an allergic reaction. I think my throat was just dry. Overall, I'd say it went well. Now I'm just waiting to see if there are any aftereffects.......fingers crossed for NOT!

ScreaminMeanie
05-01-2011, 03:44 AM
Didn't sleep very well last night - probably the solumedrol - but I woke up with no pain for the first time in I can't remember how long. Again, probably the solumedrol, but I'll take it. Got all my errands done this morning and still have some energy left over. Not going to push things any more today, just in case. Fingers crossed I still feel this good tomorrow.....and the day after....and the day after....and the day after...... ;)

Sangye
05-01-2011, 04:21 AM
That's awesome! I hope you get better and stronger every day. :thumbsup::hug3:

ScreaminMeanie
05-01-2011, 10:37 AM
Still feeling pretty good - virtually pain-free all day. Got a little hot/cold thing going on with my feet - 20 minutes of freezing, 20 minutes of sweating, rinse and repeat. That was part of my sleep problem last night. Hope that goes away soon - I'm wearing myself out ripping my socks and shoes off, then putting them back on again (or taking a blanket off, turning the fan on, opening the window; pulling the blanket back up, turning the fan off, closing the window, rinse and repeat). LOL

Kami
05-02-2011, 12:28 PM
:biggrin1:Thanks for posting how you are feeling, I have my first treatment on Wednesday and I am a little nervous so your posts are very encouraging. Thank you! I am glad you are doing so well, I hope you continue to feel good!

ScreaminMeanie
05-02-2011, 11:01 PM
I'm glad I can help someone else with my ramblings! You will do fine. It was so much less of an event than I expected. The worst parts were a) getting the IV needle in (because I have a HUGE needle phobia), and b) the tedium of sitting there for so long. If my IV hadn't kept occluding, I'd have been wandering the halls for a little exercise, but the more I moved around, the more it occluded, so I ended up being very, very still the last 2.5 hours. Have them use a spot that's not right at a joint!

Yesterday had a little of the foot pain come back, but not to the level it had been. Otherwise, felt pretty normal.

gurinbasra
05-02-2011, 11:37 PM
Every time they give me the Benadryl, I pretty much sleep through the whole infusion and I'm groggy by the time I have to leave. I would recommend you get some one to drive you home as you don't know how you're gonna feel and you deserve the attention as you have to go through this treatment - don't do it alone. I wasn't allowed to leave the floor even though I was allowed to move around (only in that unit), so I always bring food & drinks with me and would recommend it.

Good luck, hope you do well with your treatment, if you can't have someone with you during the day, you'll find lots of friends in the nurses and the other people that come and go and you get to hear their stories of what they're hooked up to and why! Let us know how you do and take care of yourself afterwards!

ScreaminMeanie
05-03-2011, 12:36 AM
I could have driven home, no problem, but everybody reacts differently to the cocktail of meds they give you. It's definitely a good idea to have someone lined up to take you and pick you up your first time. After that, you can judge how you'll feel at the end and whether you are comfortable driving yourself. I definitely plan to drive myself there and back for the rest of the infusions.

Chris G
05-03-2011, 02:25 AM
I'm so glad it went well! Are you still feeling well? Sleeping any better?

ScreaminMeanie
05-03-2011, 03:51 AM
Feet hurt a little more than yesterday (still not as bad as before the treatment), and overall I feel a little better than I have been. The solumedrol no-sleep thing was just the one night, thankfully!

(I've put up "No Parking" signs in case Sangye's truck is thinking of coming this way. ;) )

Sangye
05-03-2011, 03:57 AM
ROTFL Hilarious (and why didn't I think of that?) Don't worry, the truck is safely parked at my house/on me. Good time for everyone else to go get rtx. :wink1:

LisaMarie
05-04-2011, 05:44 AM
You must have forgot to keep it there last August ...because it came to visit me and would not leave...so please keep it secure at your parking lot on tight lock and key when I have to do RTX again.....hope it is aleast turned off and not bothering you

Sangye
05-04-2011, 05:50 AM
Oh yeah, last August it might have driven away while I was involved with the vertigo and hearing loss thing. The Wegs symptoms were doing pretty good at that point. Good reminder to make sure I secure the truck somewhere.

The rtx truck isn't bugging me right now, but the Wegs dog seems to be biting at my heels. Maybe we could get the dog involved in chasing the truck??? :laugh:

Kami
05-04-2011, 01:03 PM
Well big day tomorrow! I think I am set, I have snacks and someone to drive. I am a bit nervous, I didn't much care for the IV treatments when I did the cytoxan so not really looking forward to this either especially with the benadryl and steriods but I am hopeful that it won't be as bad as I am imagining. Thanks for all the good information and well wishes! Screamin', glad you are feeling good! Back soon with updates. Thanks everyone for your support!! Kami Oh I think I found a tow truck in case I need one! :w00t:

Sangye
05-04-2011, 01:07 PM
Best of luck, Kami. You'll be fine. :smile1:

ScreaminMeanie
05-04-2011, 10:39 PM
It will not be as bad as you imagine! Relax, and let the nurses hook you up with the good stuff. ;)

Kami
05-05-2011, 11:21 AM
Well I am home, not too bad. I made it thru the first hour and a half and then my throat started to feel really scratchy and my ear started to itch so they stopped it and called my doctor. He said that was kind of common. They gave me some more benadryl and tylenol, waited 15 minutes and started it up again at the slowest speed. I did just fine after that, increasing the speed every 30 minutes. Long day and really tired but otherwise doing good. Kind of feels like when the novacane wears off after a trip to the dentist. lol Thanks everyone!! Have a good night! Kami

ScreaminMeanie
05-05-2011, 11:28 AM
Yay!!! Glad you made it through okay! I was pretty wiped out after I got home from the first one, too. I think a lot of that was that I wore myself out worrying about what might happen. We're both getting through the next 3 infusions with NO hiccups, and will come out the other side with the Wegs dog on the run! Right? Right!

Kami
05-05-2011, 11:38 AM
I think the extra benadryl helped wipe me out a bit too.
Right!! Run Spot Run!!!!!!!!! :)

Sangye
05-05-2011, 12:04 PM
So glad it went well for you, Kami! Rest and take care of yourself. :smile1:

pberggren1
05-05-2011, 03:34 PM
Kami, do you know how much rtx you get with each infusion? I am supposed to get 700mg if I get approved.

Chris G
05-05-2011, 11:46 PM
Glad it went well Kami. Keep us updated on how you're feeling.

Sangye
05-06-2011, 12:25 AM
The dose for rtx is 375mg/sq. meter for everyone. They calculate how much you are given using your weight.

Interestingly, in reading the detailed dosing pamphlet for rtx I learned that the dose is the same for those with NHL (Non-Hodgkin's Lymphoma--type of cancer) and Wegs. With ctx, Weggies get a much lower dose of ctx than is used to treat cancer.

Kami
05-06-2011, 12:42 PM
Kami, do you know how much rtx you get with each infusion? I am supposed to get 700mg if I get approved.

Hi Phil, I had 691 mg. Good luck, I hope you get good news soon!

ScreaminMeanie
05-06-2011, 11:42 PM
I got a 500 mL bag, but I don't know how many mg of RTX that was. I'm assuming that is the 375 mg/m squared that is the recommended dose. I'm also going to ask today how much solumedrol they're giving me (in prednisone equivalent so it will make sense to me).

(Today, my tote bag will have plenty of snacks along with water and books!)

Kami
05-07-2011, 03:27 AM
Hope you have a good day ScreaminMeanie!!
I had 691 mg Rituxan in a 1000 ml bag. 50ml methylprednisolone, 50 ml of Benadryl, 600 mg of Tylenol and then another 25 of Benadryl and another 600 of tylenol when I started to have a reaction.
I am taking more snacks next time too! lol

Sangye
05-07-2011, 04:11 AM
How much pred are you on, Kami?

Dr Seo said he wouldn't give less than 80mg solumedrol (methylprednisolone) with rtx to prevent reaction. I get 100mg. I'm only on 2.5 mg oral pred. If you're on higher dose pred, you might not need as much solumedrol during the infusion.

ScreaminMeanie
05-07-2011, 08:23 AM
Second infusion went without a hiccup! I found out they're giving me 100mg solumedrol, and 750mg of Rituxan. Because of last week, they repeated the first infusion schedule, so it took about 4.5 hours to do the whole 500mL bag. Next week, since I had no problems, they'll go faster. Yay!

Sangye
05-07-2011, 08:36 AM
That's great! I'm so happy you're doing so well with it. You're halfway done!

Kami
05-07-2011, 11:12 AM
How much pred are you on, Kami?

Dr Seo said he wouldn't give less than 80mg solumedrol (methylprednisolone) with rtx to prevent reaction. I get 100mg. I'm only on 2.5 mg oral pred. If you're on higher dose pred, you might not need as much solumedrol during the infusion.
I am on 20 mg prenisone until Sunday then I go down to 10 mg and then June 8 I go to 5 mg and then on July 8th I go off of it again as long as all goes well I guess.

Kami
05-07-2011, 11:15 AM
So glad it went well!!!

ScreaminMeanie
05-07-2011, 11:16 AM
Kami, have you noticed any improvements in your symptoms yet? My arthritis symptoms have definitely improved already, and the lesions have almost completely cleared up.

Kami
05-13-2011, 03:07 AM
I have been offline for a few days, feels good to be back! I had my second treatment yesterday and all went well, no reactions, yay!!!!!! Found out my max rate is 400mg/hour but I never got that fast at 690 mg but got up to 350 I think without a problem. Took our own lunch this time much better than the patient lunches they give you, a cold soggy turkey sandwich that must have been in the fridge for days! :( Otherwise I really like the clinic where I go. Next time I might take a DVD as thier list is a bit slim, watched NCIS most of the day :)

Saw my blood doctor on Tuesday and just thought that I would share what he said about Rituxan. I told him I had been unable to find any information on long term effects all i could find was information on infusion reactions and he said it is because there aren't any long term issues, infusion reaction are very common and the biggest problem there is with Rituxan. He has used it a lot for the last 15 years for the treatment of auto immune blood disorders and he has seen no long term problems with it. He says he feels that it is very safe long term because he should have encountered problems by now. He gave the example as like what happened with phen-phen if anyone remembers that. I thought that was very good news for us!! :) yay!!!!!

Also saw my Rhuemy on Tuesday and he has decided to keep me at 20mg pred for another month until the rituxan has more time to kick in, then taper me to 10mg. Other than that all seems to be going good.

I don't have RA or lesions so I can't comment on improvement that way but I did notice last night when I sat down and turned the tv on I could actually read the program guide. It's still a bit fuzzy but I couldn't read it at all on Monday night when I watched tv. Yay! I am so happy to see improvement this way, I have been very frustrated fighting with my eyes at work, driving, everything!! I do feel pretty wiped out a lot lately and they said yesterday that is a side effect of the rituxan and should improve.

So mostly positive here lately. Hope everyone else is doing good. I think of everyone here often now and it is great to feel a part of such a big "family" if you will. Thank you! Take care! Kami

ScreaminMeanie
05-13-2011, 03:30 AM
Oh, Kami, that's AWESOME to hear! I've had a lot of problems on and off with my eyes but it seems to be allergy-related (as a result of being immune-suppressed), not WG related. In any case, the little problems I've had make me ever so much more sympathetic to your vision problems. I'm SO glad you're getting some improvement!

Sangye
05-13-2011, 03:59 AM
Kami, that is great news. SO happy you're doing well already. :hug3:

As far as the long-term problems with rtx, yes they've used it for over 10 yrs for Non-Hodgkins Lymphoma. That would be what a hematologist (blood doctor) knows about. But it's only been used for less than 5 years with Wegs. That's the unknown--will it affect us differently or cause some problem that wouldn't happen with NHL? No one knows.

I don't dwell on this uncertainty but just wanted to let you know that's the reason for the Wegs specialists using rtx with caution.