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Rituxan??? Still at single digits with Prednisone

  • pegstirling
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  • My son, Aaron, dx at age 5 (5/2001), though he was in remission for 5 years after a vaccine, came out of remission and lives at 3k. Did 5 years of treatment with but then stopped working, back at 3k. He is basically non responsive to all regular treatmen
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12 years 10 months ago #29399 by pegstirling
Rituxan??? Still at single digits with Prednisone was created by pegstirling
Well, Aaron has been 1K for the last 3 weeks. Had a little tongue bleeding on Wednesday so we started the high dose of prednisone to test it out. 2 days still at 1K and today after 5 days only up to 8K. Scheduled to start 4 rounds of Rituxan. Aaron has does well with the extremely low counts. He didn't even bruise where they did the bone marrow biopsy. The hemos are astonished with how well his body has tolerated 1K. We need dental work and I feel like we need to find something that will work in cases of this and emergencies. Looks like our plan to go to Disney at New Years is going to have to wait unless he has a immediate response to the Rituxan. Ugh. Don't have the time to do all the reading and research I did the first time around. I am at a loss with what exactly to do. I do still want to go back to the homeopath.
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12 years 10 months ago #29459 by alisonp
Replied by alisonp on topic Rituxan??? Still at single digits with Prednisone
Hi Peg,

Dougie's dr is also suggesting that he does rituximab starting in January. Like Aaron, we haven't really treated him before, although his count is normally in the 5-15 sort of range. I am very nervous about it. I'd be really interested to hear how Aaron goes on with it, and I really hope it works for him.

Ali
  • pegstirling
  • Topic Author
  • Offline
  • My son, Aaron, dx at age 5 (5/2001), though he was in remission for 5 years after a vaccine, came out of remission and lives at 3k. Did 5 years of treatment with but then stopped working, back at 3k. He is basically non responsive to all regular treatmen
More
12 years 10 months ago #29464 by pegstirling
Replied by pegstirling on topic Rituxan??? Still at single digits with Prednisone
He will get his first Rituxan treatment tomorrow. So we will keep our fingers crossed. Aaron was in the Child Study through Boston Children's when he was 8 but didn't respond. But, everything is so different this time and he has gone through puberty now so am hoping for a different result than last time. Will keep posted.
The following user(s) said Thank You: firkins
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12 years 10 months ago #29468 by BethF
Replied by BethF on topic Rituxan??? Still at single digits with Prednisone
Peg -

Just wanted to send good wishes your way and I'll be pulling for Rituxan to work for Aaron this time. Brady received Rituxan way back when and it didn't do anything for his count and I've also wondered if time and puberty may change the way he responds if we were to try again.

Lots of luck!
Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)
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12 years 9 months ago - 12 years 9 months ago #29925 by firkins
Replied by firkins on topic Rituxan??? Still at single digits with Prednisone
Hi Peg,
I don't know you but wanted to write to say good luck and I hope this works for Aaron. We are also in the Boston area (Natick) though our daughter goes to MGH where we have a really fabulous hematologist. Hope he gets some response to t his and that the treatment isn't hard for him. Keep us posted.
Firkins

ps Mia tested at 1 a couple of weeks ago -- then WinRho -briefly up to 434!!! now back down to 5. ugh. Considering Rituxan so following Aaron and Dougie and sending prayers for that reason, too....
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.
The following user(s) said Thank You: pegstirling
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