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Tim and Rituxin again

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14 years 2 months ago #17144 by lucidawn
Tim and Rituxin again was created by lucidawn
This Thursday Tim will start another course of Rituxin. His current hemonc feels its worth a try and says there is a 20% chance of 'cure' the second time if it didn't work the first time. So, that's worth a try I think. He also wants to do a BMB, but I'm thinking no on that one. I just don't see the overwhelming value of it. Any feedback guys? I can't think of a good enough reason to put him through the risks of infection, anesthesia, etc.

Thanks,
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
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14 years 2 months ago #17149 by xray001
Replied by xray001 on topic Re: Tim and Rituxin again
Hey Donna - what are his counts? Why are they trying Rituxan again?

As for the bone marrow, that is probably best left up to Tim.

Danica had a repeat bone marrow before her surgery, and did not have any pain killers or anything, and made it through the procedure with flying colors. (I think perhpas she is a little braver than me, and also, her hemo has done a million of them, and is very good at them)

Good luck with your decision.
Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594
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14 years 2 months ago #17151 by tacmom
Replied by tacmom on topic Re: Tim and Rituxin again
I agree with Michelle..ask Tim if he wants to go through a bone marrow biopsy. Maybe he would like it for the peace of mind before he heads off into adulthood. I would want it just because of the Nplate, to make sure it has not made any changes to his bone marrow.

I do hope Rituxin works. Keep us updated and I pray that he is part of that 20% that it works for the 2nd time around.
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...
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14 years 2 months ago #17156 by alisonp
Replied by alisonp on topic Re: Tim and Rituxin again
My memory must be going - it only seems like yesterday that Tim finished the last round of rituximab! Like Pauline, I am really keeping my fingers crossed that he is in the 20% - good luck!

Ali
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14 years 2 months ago #17194 by lucidawn
Replied by lucidawn on topic Re: Tim and Rituxin again
It looks like we will be delaying the Rituxan/BMB for the time being. Tim's had a few weird symptoms with memory lapses, so we are going to investigate that first.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
Moderators: jaycharness
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