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Rituxan date

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15 years 5 months ago #7385 by CindyL
Rituxan date was created by CindyL
Well I finally have a date for Rituxan treatments. Now that I've actually got one, I'm a little nervous. It's not until September 15; three days after my next blood test. I guess this means the hospital has given the approval for it to be used with ITP patients. The nurse who called said the first time would take about 4.5 hours and the next 3, as long as there weren't any problems, would take 90 minutes. She said she would have to talk to the doctor about giving me steroids before hand. There wasn't any mention of any other pre-meds. Hopefully, this works!

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15 years 5 months ago #7388 by Lorie85
Replied by Lorie85 on topic Re: Rituxan date
I wish u all the best!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #7390 by Sandi
Replied by Sandi on topic Re: Rituxan date
Cindy - that's great! Don't be nervous; you've done IVIG, same type of thing.

I had Solumedrol as a pre-treatment and actually felt better the day after Rituxan than I did before.

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15 years 5 months ago #7395 by hairball01
Replied by hairball01 on topic Re: Rituxan date
Cindy
To make the Rituxan infusion a little more comfortable, they may add Benadryl to the IV prior to the Riuxan. This may make you drowsy and/or sleepy for an hour....maybe longer. Don't plan on catching up on your reading during this time..... and you'll need a ride home.

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  • server
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  • newcreationchangingdaily
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15 years 5 months ago #7396 by server
Replied by server on topic Re: Rituxan date
congratulations Cindy! The infusion times seem a little quick, from what I had anyway! First one took 6+ hours and the other 3 almost 4 hours each. Yet again, I guess everyone has different stuff! Praying it all goes well with it, and can't wait to hear how it goes.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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15 years 5 months ago #7402 by CindyL
Replied by CindyL on topic Re: Rituxan date
Hairball, I'll probably get my dad to take me to the hospital and then pick me up. I have to be there at 8am.

Server, that's exactly what I was thinking too! I was expecting to be there all day. I did explain to the nurse that I get the IVIG over 6 hours instead of the 3 I used to get. But she said it was a different medication. I'm not sure if I want to do it without pre-meds, though. Oh well, got a couple of weeks before I have to worry about that.

My next blood test is the 12th, and I usually get IVIG the next day. I wonder if I'll get both that week. The 12th is a Sunday, treatment on Monday and Rituxan that Wednesday. Would the dr. order both for the same week?

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  • server
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  • newcreationchangingdaily
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15 years 5 months ago #7406 by server
Replied by server on topic Re: Rituxan date
Cindy, I don't know about IVIG and Rituxan in the same week, but I had NPlate and Rituxan on the same day! I would suggest the pre-meds, in my opinion, it wouldn't hurt. I didn't have trouble driving after the Benedryl, but everyone is different!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #7414 by Sandi
Replied by Sandi on topic Re: Rituxan date
I can't imagine that they'd give Rituxan without the pre-meds. Those are pretty much protocol (here at least). I think they are important.

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15 years 5 months ago #7415 by CindyL
Replied by CindyL on topic Re: Rituxan date
I certainly hope not! That's the one thing I'm really afraid of. I know how I felt after the IVIG; it's not something I want to go through with the Rituxan.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #7416 by Sandi
Replied by Sandi on topic Re: Rituxan date
The main thing about pre-meds with Rituxan is that they can hinder reactions during the infusion. I think more people would have bad reactions during if it weren't for the pre-meds.

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15 years 5 months ago #7418 by SteveC
Replied by SteveC on topic Re: Rituxan date
My Rituxan pre-med @ infusion lab is 2 Tylenol and a Benedryl IV. Within 30m the Benedryl has me so tired I sleep for 2-2.5 hours - sure beats the boredom of a 5h infusion session and I've not had any systemic "reaction" yet (two infusions behind me - 2 ahead).
Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C

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15 years 5 months ago #7423 by CindyL
Replied by CindyL on topic Re: Rituxan date
With the IVIG I get 2 Tylenol, Benadryl and something else. I think it's what Sandi said she got, Solumedrol (sp). I hope I get something more than just some steroid 24hrs before, which is what the nurse mentioned. Maybe when she talks to my doctor, she'll mention the fact that I told her I get reactions to the IVIG and he'll order more pre-meds.

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15 years 5 months ago #7841 by CindyL
Replied by CindyL on topic Re: Rituxan date
So, I just got another call from Dr. D's nurse. I will be getting Decadron over a 24 hour period before the Rituxan. Is this a normal procedure? I see him the week before I get my first dose of Rituxan. Is there anything in particular that I should ask him about? Steven is going with me to that appointment, but won't be going with me when I get the Rituxan.

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15 years 5 months ago #7867 by wildroseao@aol.com
Replied by wildroseao@aol.com on topic Re:Rituxan date
There is some indication that Rituxan + Decadron is more effective than just Rituxan alone.... The benedryl premeds will probably put you to sleep--are you able to get someone to sub for Steve, just to make sure everyone washes their hands and all goes well? To infinity and beyond with those platelets, girl! Ann, Caitlin's Mom

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15 years 5 months ago #7871 by CindyL
Replied by CindyL on topic Re:Rituxan date
Thanks for the reply, Wild. No one is going with me to the actual Rituxan appointment. I know my mom would go if she could. I don't find that Benadryl does much to me. I'll be able to read my book or do puzzles while I'm there. I'm sure I'll do fine! I hope. I'm not even sure if I'll be getting Benadryl. I guess I'll ask Dr. D. about that when I see him.

Have you had Rituxan? Did you do the Decadron over a 24 hour period in advance?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #7877 by Sandi
Replied by Sandi on topic Re:Rituxan date
Cindy - I went alone too. I didn't see the point of having someone else be bored all day.

I don't think Decadron is a bad idea; it would probably help both the counts and any chance of reactions. However, if you haven't had any during-infusion reactions, you won't now.

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15 years 4 months ago #7880 by wildroseao@aol.com
Replied by wildroseao@aol.com on topic Re:Rituxan date
Hi Cindy--
It was my daughter Caitlin who had Rituxan, 7 years 11 months ago and counting....her counts have been in the average range since then! She had been on Decadron pulses for about 10 months prior to Rituxan, about one pulse every 3-5 weeks depending on how fast her counts dropped, but didn't get any dose immediately before her Rituxan-go-round. They wanted to know if the Rituxan was working...but I'm sure she still had residual levels of steroids! She was one of the early kids to get it, at age 15, but maybe they (researchers) saw a trend in responses, in which folks who'd been on hi-dose steroids got better Rituxan counts???

Well, keep your eyes open as much as possible for the simple things that can go wrong. My CEU classes on 'Preventing Medical Errors' makes me paranoid! You are your own best advocate! Ann, Caitlin's (23) Mom

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15 years 4 months ago #7888 by SteveC
Replied by SteveC on topic Re: Rituxan date
I infused Rutixan on a Friday followed Mon/Tue by the IVIg. I pre med with two tylenol and a Benedryl IV without incident. Several years ago I infused IVIg and had a reaction of light headed, sweats etc so I'm glad for the pre med. The Benedryl IV puts me to sleep for two hours so the time passes more quickly - bonus in my opinion.
Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C

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15 years 4 months ago #7890 by CindyL
Replied by CindyL on topic Re: Rituxan date
Thanks for the replies, guys! I guess now that I'm actually going to get it, I'm getting a little nervous. More along the lines of, what if it doesn't work; what's next? I have a couple of questions for the doc when I see him next Wednesday. One of the big questions is, who's paying for it?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 4 months ago #7899 by Sandi
Replied by Sandi on topic Re: Rituxan date
Cindy - if it doesn't work, you are no worse off than you are now.

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  • Melinda
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15 years 4 months ago #7911 by Melinda
Replied by Melinda on topic Re: Rituxan date
You know what Cindy - I'd be nervous too :)
Something new - don't know what to expect - of course you are going to be nervous. My fingers are crossed all goes well and you will end up with a great ocunt when all is said and done! My friend had 8 infusions - she has had normal counts for 4 years now I think.

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15 years 4 months ago #7925 by CindyL
Replied by CindyL on topic Re: Rituxan date
Sandi, that is so true! You know what's funny? You've been in remission as long as I've had ITP. I remember you had your Rituxan treatment the same year I joined.

Thanks, Melinda, that makes me feel better! I guess I've just always gone into a treatment with an "oh well" kind of attitude, but this is a bit more serious. And I know my hema dr. has really pushed hard for me and a couple of others to get it. Well, we'll see what happens and hope for the best. With any luck, I'll be one of the ones who can post "success!"

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 4 months ago #7934 by Sandi
Replied by Sandi on topic Re: Rituxan date
I hope you do have success. That would be a nice break for you!

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15 years 4 months ago #7937 by eklein
Replied by eklein on topic Re: Rituxan date
Cindy, are you invulnerable to IV Benadryl? Because it is like benadryl from Krypton.

When I had Rituxan I had prepared a little home nest for myself for afterwards, with beverage and books and tv remote and blankets, because even if you don't have any big problems (and most people don't) you probably will feel tired from the ordeal of it.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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15 years 4 months ago #7939 by CindyL
Replied by CindyL on topic Re: Rituxan date
Erica, I don't usually get drowsy until I get home. Then I just sit on the couch and veg! :lol: Which I'll probably do after the Rituxan too!

Question? Are Decadron and Dexamethasone the same thing? I have to take this every six hours starting 24 hours before my Rituxan treatment.

I ran into the other girl that my doc was pushing the Rituxan for yesterday. She's already done her four weeks. It's brought her count up to over 10, so she's happy.

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  • server
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15 years 4 months ago #7940 by server
Replied by server on topic Re: Rituxan date
Hi! :) You're getting closer and closer. It's gonna be alright ya know? I didn't do the Decadron before hand, just the Benadryl and Tylenol. The Benadryl made me a little sleepy, but I did get some reading in. The hospital gave me lunch, but I did bring some snacks too. M&M's were good! No one ever went with me and I even went to work after the treatments. I'm a waitress and work evenings on Fridays. I say keep an upbeat attitude and expect the best!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 4 months ago #7943 by Sandi
Replied by Sandi on topic Re: Rituxan date
Yes, Decadron and Dexamethasone are the same thing.

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15 years 4 months ago #7972 by SteveC
Replied by SteveC on topic Re: Rituxan date
My MD administered IVIg (2 days) & Rituaxan in the same week. Pre med and no problem other than the IVIg only boosted me for 7 days (I had hoped for 2 weeks).
Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C

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15 years 4 months ago #7976 by CindyL
Replied by CindyL on topic Re: Rituxan date
Thanks, Sandi! I was a little confused when the nurse mentioned Decadron and I got Dexamethasone.

So I could get both the IVIG and Rituxan next week. That's one of the questions I have for my doc when I see him on Wednesday.

Yep, it's getting closer. I know what to expect, from reading here, so I'm ok that way.
The other girl who did it said she did fine, so I'm hoping for the same results. Will keep you posted.

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15 years 4 months ago #7978 by SteveC
Replied by SteveC on topic Re: Rituxan date
I suggest you request the pre med in advance via your MD. Then if the MD wasn't inclined re pre med you can argue your point of view and hopefully resolve the issue well in advance of the infusion.
Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C

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