Rituximab tomorrow

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Offline Sharmin

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Rituximab tomorrow
« on: March 26, 2009, 06:44:31 PM »
Hi friends,

Lil A will be getting a single dose of rituximab tomorrow.  Since his first treatment with ritux last summer his tx requirement has decreased considerably, every 3 weeks 20cc/kg.  The docs in Oakland feel that it would be better for him to receive less blood - 15cc/kg every four weeks so that we can reduce his iron and cut back on the chelators so that we are not risking toxicity. 

He is getting just the one dose of ritux rather than the full 4 week course.  The hope is that it will work and he will not need to be exposed to too much ritux.  We will need your prayers the remaining antibody issue will clear up with this one dose  - we have come such a long way we hope this takes care of things for good.  Thank you all for your support,

Sharmin
Sharmin

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Offline Zaini

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Re: Rituximab tomorrow
« Reply #1 on: March 26, 2009, 06:57:40 PM »


                       

Good luck to you my friend  :hugfriend i hope this dose of rituximab will take care of all the antibodies.

Zaini.
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Offline Sharmin

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Re: Rituximab tomorrow
« Reply #2 on: March 26, 2009, 07:22:43 PM »
Thanks Zaini,

Ritux does cause us some anxiety, but we are glad that it will only be one dose.  I would really like to see a significant drop in antibody activity and tx requirement soon so that lil A's iron levels will come down for our 1 year follow up in August/09.  My hope is that at that time his exjade dose can be increased to 800mg and his desferal dose can be reduced to a few nights a week - or taken away all together for a while.  The kid needs to grow!  He is 132cm and 27 kg at 10 1/2 years of age.  I think that a reduction in iron levels and desferal will help him grow. 

Thanks again for your wishes  :hugfriend :hugfriend

Sharmin
Sharmin

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Offline nice friend

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Re: Rituximab tomorrow
« Reply #3 on: March 26, 2009, 08:35:33 PM »
Sharmin
Best of Luck for all his treatments , he is in my prayers , always praying for him :pray ..



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.

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Umair

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Offline Sharmin

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Re: Rituximab tomorrow
« Reply #4 on: March 26, 2009, 09:35:41 PM »
Umair,

Thanks bud, lil A sends you a  :high5

Little A has a hockey tournament beginning tomorrow night - right after his ritux.  The doc said he can play if he feels fine after the treatment.  The problem is that he will not admit it if he isn't feeling well because he is very excited to play in the tournament.  They will be very careful by giving him Benedryl and hydrocortisone so that he does not react. 

Sharmin
Sharmin

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Offline nice friend

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Re: Rituximab tomorrow
« Reply #5 on: March 26, 2009, 09:58:55 PM »
Sharmin,
i hope n pray that his Rituximab treatment will go fine and he will be able to play tommorow ..
i wish all go well and he give his 100% and scores more goals than ever he scored :pray ...
 :high5 to you Little-A , Best of luck to you for the tournament and ritux treatment. ...
i hope you will play tommorow and you will score match wiining score as well ..

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 Andy Battaglia

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Re: Rituximab tomorrow
« Reply #6 on: March 26, 2009, 11:04:23 PM »
Make sure he stays well hydrated (Gatorade or something like it). Good luck little A!
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: Rituximab tomorrow
« Reply #7 on: March 26, 2009, 11:26:25 PM »
Thanks Andy,

That's good to know because the coach has been giving the boys Gatorade on the bench.  If the ritux takes too long we may have him play Saturday and Sunday. 

Sharmin
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Offline Sharmin

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Re: Rituximab tomorrow
« Reply #8 on: March 27, 2009, 04:12:50 AM »
Andy,

There is a virus going around in Calgary that is causing severe throat infections and prolonged high fevers - for example, my brother has been sick for over a week with no sign of improvement - his tonsils are severely swollen and his throat is severely infected - we have avoided all contact with him since.  The docs told them that this virus is rampant in our city right now - for this reason - although lil A has had ivig on Wednesday - should we avoid hockey etc after his ritux this weekend because of the chances of picking up these viruses in the locker room etc?  After this tournament hockey season is over until the fall. 

Thanks,
Sharmin
Sharmin

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Offline Andy Battaglia

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Re: Rituximab tomorrow
« Reply #9 on: March 27, 2009, 05:22:03 AM »
Sharmin,

I don't know if there's anymore chance of catching the virus at the hockey game than anywhere else he goes, like school. I think it's important that he washes his hands often and perhaps rinse his nasal passages out with salt water. I'm sure he would also be disappointed if he couldn't play.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: Rituximab tomorrow
« Reply #10 on: March 27, 2009, 05:35:37 AM »
Thanks Andy,

You are right - he would be very disappointed if he missed this tournament.  He has been talking about it all week. 

Sharmin
Sharmin

Re: Rituximab tomorrow
« Reply #11 on: March 27, 2009, 02:03:44 PM »
Hi Sharmin,

Good luck with Rituximab treatment. The virus you talked about prevails in Toronto area too. I think its seasonal. Best of luck with the tournament.

Regards.

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Offline Sharmin

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Re: Rituximab tomorrow
« Reply #12 on: March 27, 2009, 09:00:12 PM »
Thank you all for you support.  We have 2 more hours of ritux left.  In the beginning, benedryl made him really sleepy and his bp dropped quite a bit so the doc slowed down the infusion.  Little A is quite upset b/c this means that he may miss the first game of his tournament - oh, the tears...

The doc said that he was a little concerned about reaction because little A has been exposed to the drug before - so if he was to have a reaction it could have been today.  A nurse has been with us all day - and the doc has been with us too.  I hope that it continues to go well and that the antibody problem is resolved.  It seemed that the antibody was beginning to creep up a little more b/c in two days his hg has dropped from 127 to 116. 

Thanks again everyone - I will let you know how we are at the end of the day.

Sharmin
Sharmin

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Offline Dori

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Re: Rituximab tomorrow
« Reply #13 on: March 27, 2009, 09:16:30 PM »
Poor Little Mister A. Now I am upset too,  but I am sure he will doing well in game 2 of the tournament! :hugfriend  I hope he feels better soon :getwell Also I hope Rituximab will beat the antibody completely. It was not before two weeks again that I noticed that it is actually a miracle that I never had that problem. Hmm, this are not comforting words.  :blush I hope they don't want him to stay in the hospital. I usually try to smile when they are considering that I should stay and I got a lot of more trucs  :wink I hope you can sleep in your own bed tonight Little Mister A!!!!   :sandman Best wishes from the Netherlands, Dore p.s. I hope you like the colour blue...

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Offline Andy Battaglia

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Re: Rituximab tomorrow
« Reply #14 on: March 27, 2009, 11:24:00 PM »
I know little A will be disappointed if he misses his game but rituxan can have very serious side effects that usually happen during its administration, so the doctor made the wisest choice to slow it down a bit and make sure nothing went wrong. I hope the rest of the treatment went smoothly and that little A can be back on the rink as soon as humanly possible.
Andy

All we are saying is give thals a chance.

 

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