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Just finished rituxin - results?????

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15 years 3 weeks ago #8065 by JMcNally
Just finished rituxin - results????? was created by JMcNally
I just had my 4th round of rituxin & now I am speding the wknd again trying not to worry!

Last Thur I was @ 130, today I am at 37!!!!

I am scheduled to start the last of my dexamethasone nxt Thur (4 days @ 40 mg each).

I was wondering if anyone else out there completed a four wk round of rituxin/steriods & if they did, when did they start to see possible results??????

I go back for a count Monday and I am NOT looking forward to it.

I am sick of ALL the meds, it's been over a year & a half & if this doesn't work, I do not know what to do!!! I have tried it all!!!!

My specialist says I will jump around for a while & I feel better after I talk to him, then I see me regular oncologist & he freaks out & I get scared.

Hoping someone out there has some good, positive rituxin stories!!!
THank you - Jessica
  • 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 3 weeks ago #8066 by Sandi
Replied by Sandi on topic Re: Just finished rituxin - results?????
Jessica - 37 is good. 37 is okay. Repeat that.

I know you are frustrated but it is still early. I didn't see any results until the day of my fourth treatment. I went from 3 the week before to 150. Hang in there!
  • server
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15 years 3 weeks ago #8067 by server
Replied by server on topic Re:Just finished rituxin - results?????
Glad the treatments are over for you! I know they aren't THAT bad, but still it's nice to have it over. I had my last Rituxan treatment on 6/4/10. My counts have been all over the board since, from 288 to 33! I go again tomorrow. Wondering what they will be as I have been bruising a little lately. I didn't do the steriods with it though because they don't do a thing for me anyway. I did have NPlate a couple of times with Rituxan but I wouldn't go back to NPlate. The side effects aren't worth it to me. What else have you tried? I'm believing it's gonna work for you! :)

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 3 weeks ago #8068 by wildroseao@aol.com
Replied by wildroseao@aol.com on topic Re:Just finished rituxin - results?????
Hi Jessica--and Emma's Mom, too!

My Caitlin had ITP for a year before trying Rituxan at age 15. IVIg and WinRho were of little help to her, and though Dex pulses took her counts over 100K most times, it only lasted 3-5 weeks before her counts hit retreatment levels (20-30K). It's an inexpensive treatment, but she paid a high price with side effects. Anyway, she was on these pulses for about 10 months before her Rituxan. She didn't have any more steroids after she started Rituxan, but I'm sure she still had residual levels of Dex! I suspect that over time, the docs noted a pattern of better responses when Dex preceded Rituxan--hence, this new protocol, to see if a more deliberate mix of these meds results in a more positive or predictable response.

Had you tried Dex alone, before this? If so, how was the response?

I pulled out the old calendar to give you a read on Caitlin's response to Rituxan alone:

9/24/02 33K and dropping
9/27/02 Started Rituxan
10/1/02 71K
10/4/02 Second Rituxan; 132K
10/8/02 171K; developed mild pneumonia, treated with antibiotics
10/11/02 Third Rituxan
10/15/02 136K
10/18/02 Fourth Rituxan; 103K
10/22/02 115K
11/5/02 104K
11/12/02 140K
11/26/02 225K.....and she's been in the normal range ever since, almost
eight years now!

I'd like to see a scientific comparison on Rituxan alone and with additional meds, relating counts over 100K to remissions of one year or more. Informally, that's the pattern I've noted for people who've had Rituxan alone...if you hit 100K, you get a year or so of remission.

Since they have you taking Dex too, it's hard to tell how much is the Rituxan, and how much is the Dex, and whether you'll follow the same pattern. Still, yo-yoing at the beginning is quite common, so think positive and aim for high numbers when you make your pre-CBC guess next week! Ann, Caitlin's (23) Mom
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15 years 3 weeks ago #8071 by snowtiger071
Replied by snowtiger071 on topic Re:Just finished rituxin - results?????
wow thanks so much for that i just got done with Rituxan myself and so fare nothing, nada, zepo. i went from a 252 from a emergency round of IVIG and feeliing pretty good to bleeding and bruises. i got in to late to get my results back today. i will have them first thing in the morning and frankly i am scared they are back in the single digets again. so its good to hear it may still have worked because so far nothing has worked for long.
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15 years 3 weeks ago #8075 by JMcNally
Replied by JMcNally on topic Re:Just finished rituxin - results?????
Thank you everyone for the wonderful feedback!!!!
I woke up this morning, read this & I am spending this wknd think positive & thinking HIGH counts!!!!!!!!

Sandi - you are right 37 is good!!!! I am going to keep repaeting that and I am going to start saying 137 is even better (that will be my thought for Monday's count)!

I have done IVIG,NPlate (stoppingthat, trying to have another child and you CANNOT get pregnant on it), spleen is gone, and tons of steroids......Want it all gone!
I am also trying some holistic approaches: accupuncture, pure goji juice, dikon radishes, lots of greens (kale, spinach, broccoli), prohibotic pills.....

Snowtiger - good luck to you, praying your counts are on the way up.....

Ann - You have gotten back to me on a number of topics( all my pregnancy questions) and I thank you so much! You have some much useful information to share & I cannot thank you enough! I have done the DEX before but not alone, it's been w/ platelet tranfusions & IVIG.....I cannot stand the side effects of either steriod, they are awful!!!!! Looking at your daughters success rate, this is what I am aiming for!!!! When I was first diagnose (almost 16yrs ago) I went into remission for 8 yrs, had a quick relapse and then I was fune again for 6 1/2 yrs....the dr feels confident about this wirking b/c I have been in such long remissions b/f.

Thank you again to everyone!!!!!!!!!!!!!!!!!!!!!! Have a wonderful wknd!!!!!!
.

Thank you again everyone & I will let you know how it goes.
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15 years 3 weeks ago #8100 by Michelle
Replied by Michelle on topic Re:Just finished rituxin - results?????
I don't think my Hemo mixes treatments. I was doing Dex pulses but Hemo stopped those before the Rituxan. I was off everything when I started Rituxan and I was at 20. I saw a response on the day of the fourth infusion, if I remember correctly. Then my numbers bounced around a little but continued to rise for the most part. Last count was in the 150's two weeks ago. I go back to the lab next week.

Some people have gotten a really late rise out of the Rituxan.
I completely agree with the advice about thinking positively.

Best Wishes to you!

-Chelle
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15 years 3 weeks ago #8149 by JMcNally
Replied by JMcNally on topic Re:Just finished rituxin - results?????
What were your side effects of the Nplate???? i stopped it because I do not like being committed to the doctors office every week and I was told if I ever got pregnant on NPlate it could damage the fetus!!!! Just curious what your side effects were! Thank you
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15 years 3 weeks ago #8150 by JMcNally
Replied by JMcNally on topic Re:Just finished rituxin - results?????
Heading to the hemo this afternoon, thinking positive, but ready to deal w/ low numbers (I cut myself yest & it took a while for it to stop bleeding). I have one more pulse of the Dex this week and then hopefully I will start to see redults.
Thank you again for all the feedback!

Jessica
  • server
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15 years 3 weeks ago #8154 by server
Replied by server on topic Re:Just finished rituxin - results?????
the side effects of NPlate for me were intense joint/muscle pain. It was enough to mess with my sleeping and even made me cry sometimes. I wouldn't go back to NPlate for anything. Everyone is different though!

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 3 weeks ago #8190 by sskeens
Replied by sskeens on topic Re:Just finished rituxin - results?????
Hi,

My husband was on retuxin for 6 treatments and weren't doing a thing. So the doc took him off of that treatment and wants to start Nplate. I noticed you have tried Nplate, what were the side effects?
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15 years 3 weeks ago #8200 by JMcNally
Replied by JMcNally on topic Re:Just finished rituxin - results?????
I was up to 42 yesterday!!!!!!!!!!!!!!!!!
Moving on up from 37, lets hope & pray it is the rituxin working!!!!!

Gretchen thank you for getting back to me about the side effects you experienced from the NPlate.

To my last post (didn't get your name), I was on NPlate for a while & recently stopped. I stopped b/c I was told that if I got pregnant on the NPlate it could damage a fetus. I also would drop dramatically if the dr skipped a dose one week. I did not like being committed to going to the dr every week for a shot, wanted to find something more long term, hoping rituxin works for me! Sorry to hear it did not work for your husband.
I did not have any side effects, but if you read all the posts on here there are others that did, hope this helps. Good Luck!!!