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TOPIC: Rituxin treatments

Rituxin treatments 9 years 1 week ago #11422

  • jansig
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My 18 y.o. daughter was diagnosed this summer with ITP. Predisone did not work, neither did IVIG so our next option was Rituxin. However, when they started the treatment she reacted horribly and was then diagnosed with a staph infection caused at her IV site. She then went through a platelet transfusion and also vein removal in her left arm. Fortunately, her platelets rose to over 200,000. Her platelets crashed to 10,000 on December 22nd and she began Rituxin. After 4 treatments they currently are at 89,000. My questions are:

1. Do you think the platelets will continue to rise and if so how long will they stay within normal range?

2. How often can you do Rituxin treatments?

Her hematologist thinks if this doesn't work we should remove her spleen. What do you think??
Thanks for everyone input.

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Rituxin treatments 9 years 1 week ago #11423

  • jupiter1219
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Staph infection at the IV site? Is that why she needed the vein removal? I'm so sorry for your family, that all sounds so horrible.

Rituxan did nothing for our daughter, so I cannot comment on if the levels will continue to rise or how often you can treat with it. BUT, I would suggest holding off on surgery. It's a personal choice that only your family and your doctor can make, but there are more options out there. If surgery doesn't work, it's not like you can put the spleen back.

Unless she's having significant bleeding issues, my advice is to seek out other treatments. There are other types of steroids, WinRho, other immunosuppressants, chemos, and even homeopathic remedies. Surgery should be the last resort, in my humble opinion.
Sabrina
mom to 6 year old DD with Refractory Chronic ITP
diagnosed at 2.5 years old

Treatments tried to date:
IVIg
WinRho
Rituximab - 4 doses
Dexameth - both IV and oral
Prednisone / Solumedrol - too many times to count
Transexamic Acid prior to proceedures

Currently on Promacta, 25mg
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Rituxin treatments 9 years 1 week ago #11425

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The way I'm reading it is that she got the staph infection before Rituxan. Right? 89 after the 4th treatment is good, in my opinion! Sometimes just 1 round of Rituxan is good enough. Sometimes not! Sometimes it takes up to 12 weeks for any thing to happen.I just finished my 2nd round. The first time kept them up for 6+ months. We'll see about this time! There are many other options out there before spleen removal. I would suggest you do some more research first.
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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Rituxin treatments 9 years 1 week ago #11431

  • Sandi
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Jan - I'm going to move you to the adults section tomorrow since your daughter is technically an adult. You'd get more accurate responses there.

To answer your questions, her counts may rise or they may not. Everyone is different, and the goal with ITP is sometimes to maintain safe counts, not necessarily normal counts. 89 is good.

Rituxan is known to last an average of about 12 months. I got 13 months from my first round of infusions, however, after I used Rituxan again, I am now going on 6 years of remission. Some people have been getting long remissions from a second round.

How often can it be used? I don't think there are any long term studies on that. Rituxan has only been around since 1996. I haven't really seen anyone use it more than 2 or 3 times.

If she was only diagnosed this past summer, I would not consider spleen removal. How low do her counts get?
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Rituxin treatments 9 years 1 week ago #11434

  • jansig
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Thanks for responding...my girlfriend said this site would be wonderful. Her count on December 22nd was 10,000. While in the hospital back in August, they went as low as 3,000 maybe even lower. She was in 15 out of 20 days and it was a nightmare so I think I've blocked out some of the facts.

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Re: Rituxin treatments 9 years 1 week ago #11504

  • barrelgal
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Jansig,
As with everyone on this site I can only give my personal experience with Rituxan/ITP and tell you that everyone is different.
I've had Rituxan 3 times (4 weeks each time) I got a 'partial' response which means that rituxan did raise my platelet levels, but not by a lot. I had them spaced out by about 6-8 months eachtime. My counts would typically go up 4 weeks after my first day then continue to rise for the next ~8 weeks, then slowly go down until I decided to treat again (which for me was around the 30K platelet mark so that I would begin to rise agian befor hitting the teens)
I'm no longer using Rituxan, but my Dr would have continued to give it to me had I decided to keep taking it. He never mentioned if there was a 'max amount' of times I would have it in my lifetime.

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Re: Rituxin treatments 9 years 1 week ago #11509

  • skelenbaas
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Hi,
I don't really know much because my 20 yr old daughter just was diagnosed at the end of October, with platelet levels of 5. Steroids got her up to the 80's but nothing more. She started Rituxan three weeks ago and today was her third infusion. Last week her platelets were 164 and we were so excited. This week they were down to 89. I have the same questions you do. It must have been really hard when your daughter had such a HUGE reaction!! I hope things improve for her now!

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Re: Rituxin treatments 9 years 1 week ago #11520

  • Theresa
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Hi, after hitting 6,000 and trying IVIG and Prednisone to no avail, I finally got a response from the combo Rituxan & Dexamethasone. Platelets started rising slowly over 6 weeks and now they are at 125.

This article discusses this one-two punch approach.

journals.lww.com/oncology-times/Fulltext/2009/02101/ITP__Rituximab_Dexamethasone_Combo_Effective_for.3.aspx

Theresa
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Re: Rituxin treatments 9 years 2 days ago #11620

  • jansig
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Thanks for the info. We finished her Rituxan treatment on January 12th and that day her platelets were up to 89. We are going for blood work tomorrow. I always get nervous about the results. Thanks for the article...

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Re: Rituxin treatments 9 years 2 days ago #11621

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How is your daughter doing? Mine finished her treatment on January 12th and her platelets were at 89. We are going for a blood test tomorrow. I get so anxious about the results.

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Re: Rituxin treatments 8 years 11 months ago #11918

  • AlaskaCat
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Hi Jansig and everyone.
Jansig, I too have an 18 year old (son) with ITP and he was diagnosed this past Fall.
He has been on prednisone since Sept. with the dosages gradually increasing. He has had two IVIG treatments and an Amicar treatment as well. We are facing the Rituximab treatment this week, and needless to say we are very frieghtened by some of the side effects he may or may not get. If it was me, I would have it done, but when it's your child, you just never want to face the risks involved :(
Although my son is considered an adult in the ITP world, we take him to Scottish Rite to a pediatric hematologist. They are so wonderful at Scottish Rite and I think the environment relaxes him as well.
We are trying to look at the positive aspects of the Rituximab and not the negative (very hard to do). At their young age, we want to hold off as long as possible with the splenectomy.
Please keep me informed on how your daughter is doing.
Warmest Regards,
Jackie

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Re: Rituxin treatments 8 years 11 months ago #11922

  • Sandi
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Jackie - it might help to know that most people have no side effects from Rituxan. Although there are a lot of scary ones listed, most find that it's even easier than IVIG. I found the infusions very uneventful and just slept through them due to the pre-meds.
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Re: Rituxin treatments 8 years 11 months ago #11926

  • Rita
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Hello AlaskaCat and everyone,
I am new to this forum. My husband was diagnosed with ITP Sept.10. He is 42. First of all thanks to all of you for all this great info. This has given me such hope and I feel much more at ease. We went through the roller coaster ride of steroids. (pred and decadron). I was very afraid of my husband receiving rituxan bacause of all the side effects etc. He had his 4 infusions starting 12/28/10 through 01/18/11. Like Sandi and many others, he was sleeping most of his infusion time. He had a little allergic reaction (itching in his face and throat )on Infusion 1, 2 and 4. He got more benedryl and the rest of the infusions went well. I am so thankful we went ahead with the rituxan. His platelets have been between 181 and 170 for the last 4 weeks. CindyL, thanks you also very much for sharing your rituxan story, it sure helped and I am so very happy it is working for you.
all my best to all of you
Rita

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Re: Rituxin treatments 8 years 11 months ago #11938

  • jansig
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My daughter finished her 4th treatment of Rituxan and 10 days later her platelets were at 140!!! She will have another blood test next week. How is your daughter doing now that she has finished her treatments. Does her ITP limit her from doing an activity she loves? This is truly a rollercoaster ride.

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Re: Rituxin treatments 8 years 11 months ago #11939

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What treatment are you using now. My girlfriend had Rituxan 3 times spaced at one year intervals and after her 3rd treatment she has maintained normal levels now for 5 years. However, prior to 3 years of Rituxan she first had her spleen removed. I wonder if the combo did it for her.

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Re: Rituxin treatments 8 years 11 months ago #11940

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Hi Jackie

I am happy to report, Patricia had a very slight reaction to her 1st Rituxan treatment. At first she was reluctant to even try it, because she had a horrible reaction when they administered it in the hospital. Little did we know, she had the staph infection brewing and that was the cause of her severe reaction.
Anyhow, by her 4th treatment, her platelets rose to 89 and 10 days later to 140. I'm excited to see next weeks results. I will hope that the treatment works for your son.
Has he accepted his diagnosis? My daughter resents having this problem but also does not want to take any responsiblity. I suggested she get on this website to share with other teens. I agree about holding off on the splenectomy altho our current dr. is ready to operate tomorrow. Once the spleen is gone, you have to be careful the rest of your life regarding infections.
Take care and good luck with the treatments.

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Re: Rituxin treatments 8 years 11 months ago #11941

  • abro327
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Hi...I am going to be treated with rituxin for the first time on Friday. I am currently on Predisone, but my doctor wants to try since it is not safe to be on Predisone for long (been on it since Sep.) I am nervous about it. Has anyone experienced any side effects or even positive stable counts since being on it. I am 32 years old (with young boys). I was diagnosed with ITP with my 2nd child and would love a 3rd but unsure now.

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Re: Rituxin treatments 8 years 11 months ago #11943

  • Sandi
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ITP shouldn't stop you from having children - not at all! It's possible to live a totally normal life (besides treatments).

Many people have had long term remissions after Rituxan. I had two rounds and have been in remission for 6 years now (after 8 years of battling ITP). I don't know that I can fully credit Rituxan, but something did it.

Try not to be nervous - it really is pretty easy for the majority. Most reactions occur during the first infusion (if they occur at all), and patients are carefully monitored so the reaction can be stopped quickly. I didn't have any problems during the infusions.
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Re: Rituxin treatments 8 years 11 months ago #11948

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Hi Jackie,
My 20 year old daughter was just diagnosed last October. It's been a tough, although not lengthy, road so far. She was on high doses of prednisone which boosted her up for awhile, but she was having lots of side effects. The doctor wanted to try rituxan. A week ago, she finished her fourth treatment and had a few side effects, like hives, headache, and achy joints, and fever. Other than that, it was fine. We are only a week and a half out, and her platelets are at 69. Our hope is that the rituxan will continue to do its job and she will go into remission. Best wishes for your son. I really had a hard time letting go, and letting God hold her through it.
God's blessings,
Sue

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Re: Rituxin treatments 8 years 11 months ago #11949

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I'm glad it helped, Rita! I'm not quite ready to say I'm in remission, but I am in the normal numbers.

I hope your husbands counts continue to rise.

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Re: Rituxin treatments 8 years 11 months ago #11969

  • srunge
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My 14 year old daughter had Rituxan in September 2010, We just had her blood check yesterday and its at 202k. We thought it may be going down last month because it was at 160k but she had a cold. So happy that it came back up. We're enjoying a little less stress at our house :)
Shauna, mom of Emmy

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Re: Rituxin treatments 8 years 11 months ago #11989

  • skelenbaas
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My daughter is on a roller coaster. I know how you feel about cbc. I am always hopeful, then discouraged when they plummet. The last four weeks we have been 163, 89, 133, 69. The last time, I was prepared for the "normal range", but that did not happen. I felt like the air was let out of my balloon. How is your daughter? You have had a rockier road than we have had.

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Re: Rituxin treatments 8 years 11 months ago #11990

  • skelenbaas
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Great to hear a success story!! :)

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Re: Rituxin treatments 8 years 11 months ago #11997

  • abro327
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Shauna....so nice and comforting to hear that rituxin is working as it should for your daughter. My first treatment is tomorrow morning and am hoping for the same results, but know from reading others' comments that this is not always the case. Best of luck to your family.

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Re: Rituxin treatments 8 years 11 months ago #12015

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this the 3rd week since my 2nd round of Rituxan. Counts are s l o w l y rising. 38, 49, 49 and today.....62! I'll take it!
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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Re: Rituxin treatments 8 years 11 months ago #12033

  • Sandi
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Good for you, Gretchen! I'm happy to hear it!

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