Rituximab tomorrow

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Offline Sharmin

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Re: Rituximab tomorrow
« Reply #120 on: May 15, 2009, 03:52:20 AM »
Thanks Manal and Canadian Family,
 :lovethissite
 :grouphug

BTW, 2 more goals in soccer for lil A tonight.  He was very excited to play and he quickly got ready to play soccer after his transfusion today.  Never discount thals because they can do anything! 


Sharmin

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Offline nice friend

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Re: Rituximab tomorrow
« Reply #121 on: May 15, 2009, 05:05:38 AM »
Sharmin,
Wow, Great News , Super Test Reports , Hg in Fine Range , Ferritin is showing decline trend , i m Glad to know that all , Congrats To LITTLE-A  and a big congrats to you Sis of achieving the goals for wat you was trying really hard .....  :congrats its all bcoze of your hard work  , you're a super mom , Little-A is lucky to have you ... hope to hear more amazing news about little-a in future .. and BTW Congrats Little-A for the Goals buddy , you're truly a star thal in the family :thumbsup

Best Regards
Take Care
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Sharmin

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Re: Rituximab tomorrow
« Reply #122 on: May 15, 2009, 06:48:35 AM »
Thank you Umair,
You are all stars :)  Sometimes it is necessary to talk about thal patients in terms of numbers - hemoglobins, ferritins, etc etc.  and it is essential to maintain these numbers but I guess it is important to remember all of the other wonderful things too :) 
Sharmin

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Offline Zaini

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Re: Rituximab tomorrow
« Reply #123 on: May 15, 2009, 04:24:05 PM »
Sharmin,

I am sooooooooooooooooooo happy for Lil A  :yahoo :yahoo :yahoo I hope Lil Z's SGPT would also be down this time.

Zaini.
^*^Xaini^*^

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Offline Sharmin

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Re: Rituximab tomorrow
« Reply #124 on: May 15, 2009, 09:02:34 PM »
Thank you Zaini  :hugfriend
Lil A's doc didn't think that the SGPT numbers that lil A and lil Z were running lately were of too much concern, but it is nice when the numbers come down.  I hope that lil Z's SGPT value will come down very soon. 

Sharmin
Sharmin

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Offline maha

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Re: Rituximab tomorrow
« Reply #125 on: May 17, 2009, 12:10:21 PM »
Hi Sharmin
I hope this tx also lasts 4weeks if not more. What are normal referal ranges for hb in your hospital? I am asking this because the normal referal ranges  in our hospital(Hassan`s age) for hb are 9.5 - 16. But as a child I remember when I used to run a hb of 10 the doc would say I was anemic and the hb should atleast be 12.

take care
maha

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Offline Dori

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Re: Rituximab tomorrow
« Reply #126 on: May 19, 2009, 07:41:28 PM »

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Offline Poirot

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Re: Rituximab tomorrow
« Reply #127 on: June 19, 2009, 09:42:03 AM »
Sharmin,

We have had two kids in my centre, with a lot of the antibody symptoms and rapid haemolysis, similar to the symptoms of your son. The centre used to have a really, really tough time to cross-match the blood, and they used to get maybe one 80-85% match after cross-matching over 15 packets. Typical pre-tx HB used to be an average of 5-6gms. One kid even underwent the Ritux treatment for a month, or so.

After a lot of counselling (and entreaties and threats!), these two kids have had splenectomies done over the past quarter - I am happy to report that both are doing significantly better. The younger child has her pre-tx HB up to 9gms and more - not sure about the older kid, have not met her in a bit, but she was doing much better the last time I met her. And, the requirement of blood has dropped significantly.

So, this is an alternative that you should keep in mind, if the antibody issue recurs.

Poirot

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Offline Dori

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Re: Rituximab tomorrow
« Reply #128 on: June 19, 2009, 10:41:12 AM »
Personally I would give this always try. Keep in mind that it often doesn't have succes.

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Offline Sharmin

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Re: Rituximab tomorrow
« Reply #129 on: June 19, 2009, 02:38:32 PM »
Hi Poirot,

Thank you for that information.  Actually, fortunately my son responds very well to ritux.  His antibodies titers were very small even when his problem was at its worst his hg would drop to 90 after 2 weeks.  With ritux he receives only 15cc/kg of blood every 3 to 4 weeks - and his pretx hg has been around 110 - that is why we are adding another week to his cycle because his needs have decreased. 

My son's spleen has never been enlarged at all and according to Oakland he would be worse off if he had his spleen removed because his situation is not out of control.  Also, sometimes with splenectomy the short term outcome is good but long term is far worse.  Another reason for us keeping his spleen is that his iron levels are well controlled his ferritin levels are around 1000 right now - and we hope the next test will reveal that they are much lower.  Last time he required only a single dose of ritux and it has completely controlled the problem.  He tolerates ritux very well. 

If the patient has an enlarged spleen and severe hemolysis in that case I would definitely recommend splenectomy. 

Thanks again - all information is helpful,

Sharmin
Sharmin

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Offline Poirot

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Re: Rituximab tomorrow
« Reply #130 on: July 02, 2009, 11:09:48 AM »
That's great, Sharmin.

Splenectomy is also useful in E-Beta Thal major cases.

Cheers

Poirot

 

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