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Rituxan Retreatment-Not always successful

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15 years 6 months ago #1783 by hairball01
Rituxan Retreatment-Not always successful was created by hairball01
My 1st 4-week Rituxan regimen was in mid-2008. It was a success. In late 2009 I tried 3 months of N-plate and the results were marginal at best. I Just complete my 2nd 4-week Rituxan regimen on 2/1/10 and so far..... it has been a total failure. Research on the web indicated up to 60% of those opting for retreatment will not be successful. I am currently on 20mg Prednisone until we can develop Plan B.

I am anxious to hear from those who have had a retreatment, was it a success? If not, what was the alternative treatment.
  • server
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  • newcreationchangingdaily
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15 years 6 months ago #1790 by server
I'm just starting my first treatment next Tuesday. Praying it works for me! Wish I could help you now, we'll have to see what happens 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 6 months ago #1827 by Nisse
I just had my first treatment today. Went well. Not sure what will happen. Hoping and praying it works. But they told me I might not see a response for a couple of weeks. And I read somwhere it could take up to 12 weeks. Good Luck!
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15 years 6 months ago #1837 by server
Nisse, no side effects from the treatment?

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 6 months ago #1849 by Nisse
No!! (touch Wood) The nurse told me it is tolerable. Of course, I have the big pamphlet of papers telling me all the horrible things that could happen. That is in the back of my mind, but I have it say it was pretty easy today. They gave me benadryl and Dex (not sure of the spelling, but it's a steriod). These help with the infusion reactions. ANd they gave the rituxin really slowly. I think it lasted 5 hours. I just really hate having to wait so long for a response. good or bad.
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15 years 6 months ago #1894 by server
Whew! I'm glad for you! I'm believing that it will go easy for me too. The nurse said it should take 3 1/2 to 4 hours, but I think they will give me platelets first so there's another 1 1/2. I'm planning on it taking all day. Get my mind-set ready, then if it's shorter.....bonus! Gotta remember to bring snacks and something to read!

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 6 months ago #1899 by Nisse
I brought a bunch of stuff to do and didn't do any of it..lol The benadryl knocked me out so I was in and out of sleep half the time. The other half I walked around. HAte sitting in one place too long. It really flew by. I looked at it as a little break from my daughters. I love my chrildren, don't get me wrong. But someone wating on me for a couple of hours was nice :) Let me know how you make out next week!
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15 years 6 months ago #1973 by hairball01
Replied by hairball01 on topic Re:Rituxan Retreatment-Not always successful
Hairball01 Sez; I've been doing more Rituxan research from the manufacturers data et.al. it seems to take a 'median' of 50 days before the beneficial effects become apparent. This is like about 2 months of waiting....maybe longer. In the meantime I've been on Prednisone to keep the count up and this tends to mask the onset of the Rituxan treatment. Then the 4-week treatment regimen adds more time to the waiting i.e, when does the clock start? I may not recognize the Rituxan 'kick-in' date till the end of March. On the plus side, my initial Rituxan treatment in '08 lasted over 6 months before the count started to fall.
  • 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 6 months ago #2021 by Sandi
My response to Rituxan took 21 days. Counts went from 3 one week to 150 the next.
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15 years 6 months ago #2114 by NatalieM
Replied by NatalieM on topic Re:Rituxan Retreatment-Not always successful
I began my first round of rituxan last year around the beginning of March. Now, this year I remain with counts above 250. My last check was in December and I had 278! I go back this week to get a current count. I am crossing my fingers that my counts are still up! Stay confident and be patient...it can take a little while for the Rituxan to work. I know that I did not see results for a few weeks and then BAM! A great surprise for me. I am nervous, however, that my good luck will soon run out as the average remission with rituxan is a year. I really hope it continues to work for me! I have heard people say that their 2nd round lasted 5 plus years...so don't count that out! Does anyone have any other information on the 2nd round of rituxan? As you may remember from the old forum, I'm the hypochondriac who freaks out about EVERYTHING. So, as you can imagine all I've been thinking about all week is my trip back to the hemo on Thursday! eeeeek! So...any advice would be great :)

Thanks,
Natalie
Counts- 278 12/2009

*Here's to high platelets!*
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15 years 6 months ago #2119 by teach
Is rituxan an option for a person who has had a splenectomy? I had a treatment of some kind six years ago that didn't work. Found out that whatever I had does not work if one has had a splenectomy. Dr. just didn't check everything closely. I don't know if the treatment was Rituxan.
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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 6 months ago #2128 by Sandi
The only treatment that shouldn't be used after splenectomy is Win-Rho. Rituxan, yes, it can be used after splenectomy.
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15 years 6 months ago #2135 by hairball01
Replied by hairball01 on topic Re:Rituxan Retreatment-Not always successful
Natalie,
You are encouraging... Results of my first Rutuxan regimen in '08 only got my count into the 70-80k range, and it lasted about 6-8 months. Anything above this will be a bonus. I'll be seeing my Hemo Doc on 3/29. This will be 12 weeks after the 1st infusion. Hope it works.
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15 years 6 months ago #2467 by tortie
I hope it kicks in for you, have you tried imuran?
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15 years 6 months ago #2496 by hairball01
Replied by hairball01 on topic Re:Rituxan Retreatment-Not always successful
Teach
I had a spenectomy a few year back that did nothing to inprove the count. Even did the radioimaging to look for a phantom spleen. That's when the Rituxan regimen worked and kept the count in the 80's for about 6 months. One size does not fit all.
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15 years 6 months ago #2497 by hairball01
Replied by hairball01 on topic Re:Rituxan Retreatment-Not always successful
Tortie
Saw the Hemo doc this am. Count was 156 but I have been on 20mg Prednisone for 2 weeks. We're not sure (or cannot determine) how much the Prednisone contributed to the count. We're decreasing the Prednisone to 15mg till next monday to see the effect. In reference to Imuran, I have not tried it but I will ask my Doc about it.
General Problem with ITP Meds: Most were originally developed to treat Arthritis, cancers, organ transplants, et.al. Now they are being used 'Off-Lable' with FDA approval for ITP. N-Plate and the related spin-offs may be the exception.

We generally have three choices:
1)Supress the immune system with eg. Prednisone
2) Generate more platelets than we lose, eg.N-Plate
3) Kill or reduce the C20 cells that consume the platlets, eg. Rituxan.
Lotsaluck finding the one that works best for you.
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15 years 5 months ago #2884 by Erick the Red
Replied by Erick the Red on topic Re:Rituxan Retreatment-Not always successful
The American Society of Hematologists posts this information on Rituximab: "Several publications suggest that about 60% of patients respond to Rituximab, with approximately 40% achieving complete response. Responses generally occur after 1 to 2 weeks to 6 to 8 weeks and last from 2 months in partial responders to 5 years or longer in 15% to 20% of initially treated patients." After the third of four weekly treatments, my count dropped to 5,000 from 8,000. Not very encouraging. The fourth treatment kept in the Califormia Pacific Ambulatory Care Unit from 2 p.m. until nearly 9 p.m. -- for a three-hour infusion. So much for the efficiency of hospitals. What the future holds I have no idea.
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15 years 5 months ago #2900 by hairball01
Replied by hairball01 on topic Re:Rituxan Retreatment-Not always successful
Red Erick
From the mfg'rs info, only about 1/3 of the retreatments are successful. So far its been over 3 months and nothing had happened. However the info is based on NHL patients and not those of us w/ITP. Some of my other info comes from the Cancer Soc. Thanks for the data.