When to consider Rituximab treatments a "failure?"

This is my very first post on these boards although we'd hardly be considered newbies to ITP. My daughter was diagnosed about 3.5 years ago, but we've recently started seeing a new hematologist. One of the treatments the new doc has tried is 4 weekly rounds of Rituximab and I was just hoping to get others' comments/opinions/experiences with this medicine. Right now, she is about 6 weeks out from her first treatment of it and I am just wondering when we'd normally expect to see results, if there are going to be any.

A little bit about my daughter's story:
As I mentioned, she was diagnosed 3.5 years ago, just around her 3rd birthday while our family was stationed overseas with my husband, who is active duty in the Air Force. The doctors on base fumbled to try to help her and eventually referred us to a foreign off base hematologist after 6 months. The medicines and criteria they used were very different than what we have experienced here in the States and we now realize how inadequate the care was that she received.

Anyhow, since she was diagnosed she has received:
IVIg 7 times
WinRho 4 times
Dexameth 2 times (both in IV and oral for 4 days)
oral Prednisone & Solu Medrol numerous times
and Rituximab 4 times

At first, they just called it ITP and told us she'd "outgrow" it.
Then, it was Chronic ITP
Now, it's Refractory Chronic ITP and we have an appointment this coming week with the surgeon to discuss splenectomy. This isn't the first time surgery has been brought up, but it seems like we've arrived at the last resort since she isn't responding to meds she would a year ago. On her own without treatment, her platelet counts would usually hover around 10-20. These days, she goes all the way down, the lowest so far being 3,000 EVEN with weekly treatments.

It's quite frustrating and we anguished over the thought of even consenting to the Rituximab treatments because it seemed so risky. I fear that even removing the spleen may not help. So, back to my original question: at what point do we consider the Rituximab a failure?

Thanks in advance

It's too soon to consider Rituximab a failure. Weeks 4, 5 and 6 are when a lot of people see a response, but that's a pretty quick response. Some take 7-12 weeks to respond. I'm talking about adults, I can't say for sure if it's the same in children. Some on this board have had what seems to be a Rituxan response several months after their treatment, a slow climb in counts.

Good luck, and I'm sure you'll hear from lots of the other parent.
Erica

Erica is right, it can take up to 12 weeks after the last infusion to see a response. Some have even seen a response after that. I wouldn't consider splenectomy until after that.

Good luck with your daughter, I'm sure it's frustrating. Please know that even chronic, refractory children can obtain long remissions when you least expect it.

Hello and welcome to the boards. Glad you found us! I'm a 46 year old with ITP, so I can't comment on any portion of a childs treatment, but I just wanted to encourage you. One thing I've discovered in my journey with ITP is that there is a whole lot of waiting involved. I'm sure you've experienced that in 3 and 1/2 years already. Just don't let anyone rush you into something unless you have peace about it. Looking forward to hearing more from you.

And of course you probably know that a splenectomy isn't guaranteed to "fix" ITP either and there's no way to know until afterwards. As an adult (47), mine did "fix" it but it returned 10y later. That said, I would do it again because the 10y were good. I was @ zero and refractory to all first line treatments (cept IVIg)and felt the risk necessary (all don't agree with surgery). Regardless, it's a difficult choice and when it's your child, I know it would be even harder. I can only suggest you gather as much info as possible, use us, your doctors and prayer to guide you.

May the peach of our Lord guide you during these difficult times.

Hello, and welcome to the board. Your little precious daughter has had a lot of medication for just a little one. Does she always show active signs of bleeding? This is also important to look at. My platelets have been going up and then falling down to 1000 in a matter a weeks. And after remission for 4 years, I am not responding real well to the Decadron and IVIG and will have to seek another treatment. But, I don't have signs of real active bleeding lately--so I can wait to decide what to do next. I do make the doctor's wait a while before they proceed to the next treament. It's hard to tell what she is responding to if they proceed and give one medication after another.

Also, please read all you can before you proceed to a splenectomy since she is so young and this is such a permanent procedure. I, myself, since I am 62 will not get the splenectomy because the success rate at my age is not that good; additionally, I have problems with abcess infections which would be hard to control without a spleen.

Hey there,

My name is Jay and I also run the teleconference group, sponsored by the PDSA where we do calls every other month (the next one is in October). I too have dealt with ITP for 6-years (my daughter was diagnosed at 3-1/2 and is now 9-1/2). We have seen a lot of good responses, but I would caution you that, from what I have been told, it is a very different ball game when you have ITP as an adult and as a child. Some of the advice you have gotten is 100% accurate. First, I would caution, from my experience, to try too much at one time (or you will not know what works). Also, the new trend does seem to be treating symptoms, not numbers. Unfortunately my daughter is a bleeder so we have tried it all (including rituximab twice and the splenectomy). The rituximab is a short term fix (once it worked for 6-months, another time 9 months) and the splenectomy has helped to manage it much better, but we still have issues. As I am sure you know, all kids react differently to all treatments so it is important to do the necessary research and try to determine what you think is the best, for your child, right now. If you would like to talk in more detail, I am always available through this discussion board for any questions.

All my best,

Jay

My son was diagnosed with ITP in April 2002, a few months before his third birthday. After 6 months he was given the label Severe Chronic Refractory. He had counts under 20,000 (usually around 6,000) for about 2 and 1/2 years. He had WinRho about 30 times, IVIG 3 times, IV Steroids twice and when he stopped responding we watched and waited. Around the time he started kindergarten his counts started going up on their own. For the next 3 and 1/2 years his counts bounced all over the place. He was usually over 20,000 and sometimes over 50,000. He is now 11 and has been maintaining normal or near normal counts for the last 2 and 1/2 years. His last count (a few weeks ago) was 108,000. I haven't seen any symptoms of ITP in at least 2 years!!

I can't help with your Rituximab question as it was still in trials when Wesley was diagnosed, but wanted to share his story. There is hope for the Chronic kids - even after many years.

Cathy (Mom to Wesley 11 - diagnosed 4/2002)

Thank you everyone for your responses and Jay (as our new moderator, I see), I am sure you will be a wealth of knowledge for us! I find myself teetering back and forth between cautious optimism and complete frustration on a daily basis. I'm glad I've found a place where it's ok to at least talk about it.

We have our appt for a surgical consult this week, but after reading the responses here I feel better about not allowing the docs to pressure us into anything. I do realize that the splenectomy isn't a guaranteed fix and that, along with the possible complications, is why we've been so hesitant even though it's been discussed with so many doctors for a couple of years already. I am so scared of making wrong decisions that will affect my daughter for the rest of her life...or worse, making a decision that could take her life.

Because of his career, my husband is frequently away and it makes things tough to process or to stand up alone against the docs. I feel like they want to help, but also that they want us to be "good little patients" and sometimes things aren't so cut and dry. What works for one kid may not work for ours.

Anyway, I'm thankful to see that people here personally understand what it's like to walk in our shoes. It changes daily, but today is a good platelet count day. She's on steroids for the next few weeks and is actually responding to them right now, so that is nice. I don't really like her taking prednisone but realize that I have to take the good with the bad sometimes. I understand the advise against using too many treatments in the same time frame because of not knowing what is actually working, but often with her counts so low, that is simply the only option.

BUT, now I feel a lot more confident giving the Rituximab more time. Even if it "only" keeps her counts up for a few months, that would still be cause to celebrate to our family. Thanks again!!

I think, from your email, that you have a great feel for what is best (even if it does not always feel that way). The best advice I give to parents is to continue to be your child's advocate. Most Doctors I have dealt with, or had others deal with, are very good, but that does not mean that they are perfect or that they are not prone to change their mind. Because of this, I always encourage parents to really push a "conversation" where everyone is comfortable with a decision. As a parent though, remember, when it comes to giving your kid treatments (or some kind of surgery), you will probably never feel completely okay with it. The key is to try and think about the best thing to do for your kid, today, and do not beat yourself up over what might be.

Hope that helps.

JJ