Confused - a little advice would be nice

We have been planning to try Rituxan for my daughter, Emmy. I made the appointment and bought the tickets to fly over to Seattle (we live in Idaho) but I spoke with the heamo in Seattle on Friday and now he is being extra conservative and he spent about half of an hour going back and forth about whether we should try it or not. So he gave us the weekend to think about it, but he confused me even more. I was all set and did a bunch of research but now he made me second guess our decision.
Emmy is a very active 13 year old and it is so hard to have to make her give up the things she loves, soccer, horseback riding, volleyball, water sports. Her ITP is now past the 6 month mark so it could go on for years, Rituxan just may give her some time to be a a normal teenager.
We have tried IVIG and Emmy has a bad reaction to it. We tried, steroids they work but she crashes as soon as we tapper her and we've tried methatrexate and dexamethasone. Dex works, but again she crashes when she goes off of it.
Any advice from anyone who's tried Rituxan just might help me with this difficult decision.
It's never easy when it's your child.
Thanks, Shauna

I'm doing Rituxan now - have had three infusions, one to go. And no rise in my counts yet.
The only issue I am having is total paranoia over every little ache or pain I get, thinking that it's one of the horrendous side effects.
First it was noticing a swollen gland under my ear, which I was convinced was because of the JC virus and that I was going to get PML. (But it was probably from a cold because it's gone down now.)
Then it was a weird pain right under my ribs on the right side and I was sure I was having liver damage.
Today it is pain in the joint of my left ring finger and I was concerned that the Rituxan is causing some other autoimmune disorder affecting my joints. (But it is probably from the aggressive mopping I did late last night.)

I am a terrible hypochondriac and a pessimist when it comes to myself though. I'm really hopeful that my counts will be on the upswing soon - but mostly I am scared that if I fail to respond, I put this experimental poison into my body for no reason.

So my advice would be just to feel as confident and comfortable as you can in your decision and, if you are anything like me, be ready for the hypervigilence you might experience after you go through with it while you wait for it to kick in.

The first infusion took pretty much all day and I had a slight reaction to it - subsequent infusions have been easy-breezy, except for some slight burning at the injection site. (They just did a saline flush and started it back up again.)

It really has helped many people.
Best wishes to your daughter.

I would go through with it just because you seem like you are ready for Emmy to go through with this to see if this is the drug that gives her a break for a bit and it may even put her into remission for a long time. You can explain to the dr in Seattle that you've already bought the tickets and that you are comfortable with this move. But you might also want to find out how much experience they have with Rituxan. If they aren't comfortable with it, then it might not be the right time to do it.

I was surprised to find out that even our hospital had only given Rituximab three times earlier this year and it is a Children's hospital in a big city. (We got it at the end of Feb so it was still early in the year.) We were assigned to a specific nurse who had given it a few times before so that she knew what the "normal" reactions were to Rituximab. In fact, when Caitlin started complaining of stomach cramping, she knew it was not what the other kids had experienced so she went and got the dr, who gave her a quick physical and then told them to slow it down and keep all future infusions at a slower rate.

I think its worth a try. Either it works or it doesn't. It might work right away, or it might have a delayed affect. My son had it and he had no negative side effects. He did not respond, but it does seem to me that he might be having a response now, a few months down to road. He's been on NPlate for a few months and is not requiring as much and his counts are going up pretty high. At first he needed 5mcg per kilogram and had a count of around 30k-50k. Now he's down to 2mcg per kilogram and his count is at 338k! Correlation doesn't really necessarily equal causation, but it could be the related. If he gets a remission, then I think we'll know.

Hi Shauna

That must be a hard decision and I know I wouldn't like to be making it. What does Emmy think about it? I don't know much about ITP treatments, but the thing that would put me off Rituxan is that it seems like it can be a fairly hard treatment for an uncertain result - doesn't seem to work for a lot of people, and when it does, it can last ages or not long at all.

What does Emmy's count look like most of the time and what happens when it is low? I only ask because my son Dougie is also very active and not treating him at all is a very viable option for us. Dougie is 11, nearly 12. His count ranges from 10 to about 50, sitting at about 30 most of the time. He bruises and he gets petechiae, but nothing else. He plays soccer hard, no holds barred; he tries not to head the ball but forgets sometimes. He rides his bike with a helmet on. He has gone to play paintball with his school today, and in a fortnights time, he is going on a watersports activity camp in the Lake District where he will be doing sailing, kayaking, rock climbing, gorge scrambling etc etc. We had to get his consultant to write a letter to confirm that he would be safe doing these things and he was happy to do so. The only things that he has said to stop him doing are boxing and rugby.

What I am trying to say (badly and at length!) is that Dougie has a very normal life, despite ITP, even if he sometimes doesn't think so! Dougie's consultant keeps on saying to be guided by symptoms and not counts, to be aware the count, but more as a "risk" factor than something more solid - bit like not brushing your teeth would put you at risk of tooth decay! I don't think that not treating would work for everyone, but we are very lucky that it does at the moment for Dougie.

Good luck with your decision and with the treatment if you decide to follow that route - hope Emmy is one of its successes!

Ali

Well after much discussion with the doctor we are going to try Vincristine tomorrow instead of Rituxan, but I can't find as much information about it. So I'm a little skeptical about it. Like I said, the doctor seems to be more conservative and is only treating because Emmy is so active. She is currently at 19k with no medication.
Has anyone used this? And how did it work for you?
Thanks, Shauna

Vincristine is a pretty harsh drug. I believe it is a form of chemotheraphy and hair loss is a side effect. Sometimes it works, but many times it doesn't. Then there are the side effects that go along with it. Not many go this route and Caitlin's hematologist has mentioned it but said it is one of the treatments she won't use. There was another child who used this named Mollie and she had a really rough time with it. Mollie is now using Nplate and I believe she is still having some great success with this. (Jennifer-Molliesmom) Hopefully she will pop in and share her experience. If not, you might want to search the old discussion board to read up on this drug and see if you can find Molllie's caringbridge site because I know Jennifer documented her side effects from this. (I hope I have this information right, but I'm pretty sure it was her that used this treatment.)

Yeah, Tim's hemonc won't use it on Kids either because its hard on them...he said it burns the veins and its hard on their system. I don't think it usually causes hair loss, though. Tim's grandma used it alot before they had the better drugs (years ago) and it worked well for her when nothing else didn.

Oh my! Yes, Vincristine is a harsh way to go and rarely works. I'd choose Rituxan over that any day.

Rituxan can have lasting side effects such as neuropathy....not fun. Please research and question that treatment.

Shauna,
How was the dr visit to Seattle Children's? which med did you and the dr agree upon? On a much lighter note, the weather was wonderful here last week and I hope you at least got to spend some time doing some fun sight seeing, shopping, etc!
Many prayers!
LaMonica
mom to Camden-9 (dx 6/09)

We did go with the Vincristine, the doctor decided that we should start with it and do two treatments and if it doesn't work we will think about Rituxan. It was a very quick infusion and virtually no side effects (no hair loss). We did get in some retail therapy which is always a plus. Emmy will have another infusion this week closer to home so we don't have to go to Seattle. Seattle Children's is a great hospital, they were very accommodating.

My daughter is 14 and has had ITP since 12/09. She had Winro twice. Tends to be in the 50,000 range. The 2x she was treated she was at 15,000 and 11,000. Her Dr suggested a combination treatment of Rituxan and Dexamethasone because she wants to do more sports and we were told that this combo treatment works better together and as close to the time being diagnosed as possible. So even though she is usually at an ok level, it seems that if there is a 60-70% chance of remission with this combo, it would be good to try - maybe it will make her life easier and she will not have to go to the DR for as many blood tests/checkups. I am afraid that if we wait then there is less of a chance that this treatment would work. We will be deciding next week as the treatment would be over a 32 day period and ideally should be done before school starts. Any feedback on this would be helpful. Is Rituxan so much worse than all the other drugs that are recommended?

No, there are worse treatments than Rituxan. It is a heavy duty drug, but certainly not the worst. Most people do very well with it.

YAY! We are so thankful Emmy's platelets went up from 16k to 123k in one week from the Vincristine. She is not on anything else. She just got a second dose today, I think the hemo plans on 3 or 4 total treatments, it's a quick 10 minute push infusion. So far the only side effect has been constipation.