Here we go AGAIN

Okay, it has been a long long time since I have been on this site, but not because we have been doing great. Don't get me wrong things up until this week have been okay. Brief history here now:

In 1999 my son, Colin was diagnosed with ITP at a count of 2k. We did all the first line meds and after 1 year were told he was chronic. IVIG was our go to at that time, it worked well. Fast forward 2 years and we again suffer from low counts and receive another 6 months of treatment every couple weeks with IVIG. In 2003 we have another brief episode of low counts and note that Colin has become quite a bleeder.

In 2008 Colin became very ill and was in the hospital for over 3 weeks, we could get his platelets up briefly but then his white count dropped and would not come up. When it did we suffered low platelets and tried everything, vincristine, whin rho, IVIG, prednisone, decadron pulse, 6MP. Eventually it did and we had no problems until 2010, Colin had no platelets and IVIG would not work, nothing did until we tried Rituxan, he got a response 6 weeks after his first infusion. It lasted 18 months, and here we are now. Colin has a count of 3k and he is actively oozing from his nose and mouth. We have started Amicar and he got his first dose of Rituxan yesterday. We were advised that it may not work as well this time, I am again in a scary place. He is 14 and we have had a long time to deal with all of this, but that does not make this any easier. I really hate this ITP and am feeling overwhelmed at the moment. Just needed to vent I guess. Sorry.

Hey -
I think I remember you from the old board at some point - I have a 15-year old (Brady) who has had ITP since 2002.

I'm sorry you're going through all of this again. It must be difficult to think you're done with ITP and then keep coming back to it.

Brady didn't respond to Rituxan the first time, so we have not tried again. But I wanted to say that there are a number of people who post here who have had success with Rituxan - similar remissions to Colin - and then their platelets drop and they have great success with Rituxan again. I think that Sandi, who is on here quite a lot and has lots of ITP wisdom, is one of those people. So, hang in there and we'll be pulling for Colin to get a sustained remission out of this round of Rituxan.

Thank you.

Many people who have a good response to Rituxan like your son did have an even better response the second time. My counts after my first Rituxan round lasted 14 months. I have had a 7 year remission since having Rituxan a second time. I'd say that is an excellent response. I have seen this occur for other people also. You have every reason to hope for a good outcome this time!

Beth - I think I remember you. I have not been on here for years. Aaron was diagnosed in 2000 and is 16 now. He has been in remission for the last 5 years and I went back to work so I stopped coming to this site, but never forgot and tried to keep my membership going. Aaron just came out of remission so we are back here unfortunately.

Aaron was in the child Rituxan study back in 2004. He did not have an response but would consider it again since it seemed (back the) that teenagers and adults had better responses. Now he is older and almost through puberty (slow, he has been in puberty for 2 years, come on now). If we need to treat, I prefer alternative methods first but if he needed conventional, I would do Rituxan. Good luck to Colin.

We did the Rituxan and it has been 3 weeks since the last dose. His counts only rose to 17,000. We have decided to not do any more treatment unless it becomes an emergent situation. We will be going on a trip to Europe next week and I am a bit nervous, but we have the green light to go from his hematologist.