Thalassemia Patients and Friends

Discussion Forums => Thalassemia-related Issues => Topic started by: Sharmin on March 26, 2009, 06:44:31 PM

Title: Rituximab tomorrow
Post by: Sharmin 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
Title: Re: Rituximab tomorrow
Post by: Zaini on March 26, 2009, 06:57:40 PM


                       (http://i125.photobucket.com/albums/p50/kiarakiller/2358.gif)

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

Zaini.
Title: Re: Rituximab tomorrow
Post by: Sharmin 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
Title: Re: Rituximab tomorrow
Post by: nice friend 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 ..
(http://i4.photobucket.com/albums/y138/beerwolves/goodluck.gif)
(http://i295.photobucket.com/albums/mm149/iji_06/goodluck-1.gif)

Best Regards
Take Care
Umair
Title: Re: Rituximab tomorrow
Post by: Sharmin 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
Title: Re: Rituximab tomorrow
Post by: nice friend 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
Title: Re: Rituximab tomorrow
Post by: Andy Battaglia on March 26, 2009, 11:04:23 PM
Make sure he stays well hydrated (Gatorade or something like it). Good luck little A!
Title: Re: Rituximab tomorrow
Post by: Sharmin 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
Title: Re: Rituximab tomorrow
Post by: Sharmin 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
Title: Re: Rituximab tomorrow
Post by: Andy Battaglia 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.
Title: Re: Rituximab tomorrow
Post by: Sharmin 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
Title: Re: Rituximab tomorrow
Post by: Canadian_Family 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.

Title: Re: Rituximab tomorrow
Post by: Sharmin 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
Title: Re: Rituximab tomorrow
Post by: Dori 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...
Title: Re: Rituximab tomorrow
Post by: Andy Battaglia 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.
Title: Re: Rituximab tomorrow
Post by: Sharmin on March 28, 2009, 02:16:16 AM
Thank you all for your support  :hugfriend
Andy, we got through the day - he perked up quite a lot in the afternoon - and he tried every thing in his power to negotiate "speeding up the treatment" with the nurses - but thank god they did not listen to him.  He almost convinced the doctor to let the nurses speed it up - so that he could make it to his game - but finally the doctor said - even though most likely nothing would happen, he did not want to take any risks. 

There were a lot of tears and crying about having to spend 3 days of his spring break in the hospital and missing such an important game - he never used to complain - but I can see that we are in too often recently.but we have been entertaining him all evening so that he feel better - so far he seems better. 

I am so glad that we got through the day without any reactions - I hope and pray that the ritux settles the auto - antibodies this time.  It took 6 weeks for the antibodies to disappear last time so we will know in May how well the treatment has worked.  If it didn't work well then we can try giving him two doses of ritux at the time.  I pray that it won't be necessary. 

Thanks again for your prayers,

Sharmin
Title: Re: Rituximab tomorrow
Post by: Manal on March 28, 2009, 03:57:04 AM
Sharmin, i am happy that everything went well today, i know how hard it was for all of you.

Little A, though you missed the game but you are still our champion and there are still more to come. Your health is so precious to your parent and to us so please don't be sad because what you went through today to beat the antibodies is so important for you in your challenge. i amsure you are going to win your ''game'' with the antibodies as you always do with your hockey

Please take care

manal
Title: Re: Rituximab tomorrow
Post by: Sharmin on March 28, 2009, 04:11:28 AM
Thanks Manal  :hugfriend
Title: Re: Rituximab tomorrow
Post by: nice friend on March 28, 2009, 04:59:20 AM
Hi Sharmin,
i m glad to know that Little-A's Ritux treatmet went well today , i Wish him all the best of everything ,
Little A , there are alot more games has to come but health is more important than anything else , soo dont worry about this one , you're a star for us on both fronts, Best of Luck to  you buddy , and prepare your self for nex game, i want to hear that you scored alot of goals :grin ... Give me a :high5 ....

Quote
Health is the greatest gift, contentment the greatest wealth, faithfulness the best relationship. (Budha)
I Love this Quote ..... Wish you all the best for next game ...

Best Regards
Take Care
Umair

Title: Lil A - hockey tournament update
Post by: Sharmin on March 29, 2009, 02:55:34 AM
Hi everyone - thank you for your support during lil A's ritux treatment - he missed his game yesterday but he played today.

Lil A got the first goal - and his team won 4 - 1 !!  They are in the finals tomorrow!!    :yay

Thanks everyone for your wishes  :grouphug

We couldn't have done this without your support,

Sharmin
Title: Re: Rituximab tomorrow
Post by: Andy Battaglia on March 29, 2009, 03:09:14 AM
 :congrats   to Little A!

There may be a silver lining to missing yesterday's game because little A may be a bit more fresh than the other players who have played 3 days in a row.

 :goodluck tomorrow!
Title: Re: Rituximab tomorrow
Post by: nice friend on March 29, 2009, 03:49:43 AM
(http://img151.imageshack.us/img151/8044/congratulations0an8.jpg)
:congrats Little-A, Way to Go .. i m realy proud of you .. keep it up budy you can score more goals....

Best REgards
Take Care
Umair
Title: Re: Rituximab tomorrow
Post by: Sharmin on March 29, 2009, 05:10:53 AM
Thank you Andy and Umair  :hugfriend

I will post the outcome of tomorrows game :)  A lot of snow is expected and the game is in another town - so if the weather is bad we may have to miss it - but I am so glad that today's game went so well :)

Sharmin
Title: Re: Rituximab tomorrow
Post by: nice friend on March 29, 2009, 09:02:22 AM
Sharmin,
Your Welcome  :biggrin , i hope he could join his team tommorow .. Best of Luck for Little-A for next game .. :goodluck ...

Best Regards
Umair
Title: Re: Rituximab tomorrow
Post by: Dori on March 29, 2009, 09:39:38 AM
Bonne Chance & Good Luck today!!!!

 :yaaaaaay
Title: Re: Rituximab tomorrow
Post by: Manal on March 29, 2009, 10:04:14 AM
 :congrats little A . Keep upthe good work champion

manal

 :yay :yay
Title: Re: Rituximab tomorrow
Post by: Zaini on March 29, 2009, 05:48:40 PM
Hey Lil A .

                             (http://i19.photobucket.com/albums/b172/Volcanora/yourock.gif)

Zaini  :wink.



Title: Re: Rituximab tomorrow
Post by: Sharmin on March 29, 2009, 06:25:03 PM
Thank you Dore, Manal and Zaini,

It looks like he is going today! 

Sharmin
Title: Silver Medal
Post by: Sharmin on March 30, 2009, 01:27:39 AM
Lil A and his team won Silver Medals in the tournament:)

 :cheer :cheer :cheer

Sharmin
Title: Re: Rituximab tomorrow
Post by: nice friend on March 30, 2009, 03:14:12 AM
(http://www.lilmsglitter.com/images1/CongratSmiley-LMG2.gif)
Hey Little-A,
i m very glad to hear about your and your team's achievement , and i hope you will contineu to scoring goals and you wil be always goal scorer for your team .. i hope in future you will be main player of you team .. GOOD LUCK BUDDY :goodluck ...

Best Regards
Take Care
Umair
Title: Re: Rituximab tomorrow
Post by: Zaini on March 30, 2009, 05:46:58 AM
Dear sweet Lil A,



                              (http://i422.photobucket.com/albums/pp305/whymom3/Congratulations/WinkingGirl_Congrats1.gif)


Congrats from you sister Lil Z  :wink.

Zaini.
Title: Re: Rituximab tomorrow
Post by: Pareeshay on March 30, 2009, 01:30:55 PM
hey lil A!!
 (http://img151.imageshack.us/img151/8044/congratulations0an8.jpg)
Pareeshay.
Title: Re: Rituximab tomorrow
Post by: Manal on March 30, 2009, 02:04:41 PM
Congratulations dear, i am sooooooooo proud of  you

manal
(http://thumbs.dreamstime.com/thumb_373/1236698127glDTpH.jpg)

 :congrats :yay :yay :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup

Title: Re: Rituximab tomorrow
Post by: Andy Battaglia on March 30, 2009, 02:45:56 PM
Congratulations to Little A and his team for a great season!!! Way to go Guys!!!

:thumbsup  :high5  :congrats  :high5  :thumbsup
Title: Re: Rituximab tomorrow
Post by: Sharmin on March 30, 2009, 02:47:44 PM
Thank you all so much - you are all so sweet.  
Considering how afraid I was of how this weekend would turn out - with ritux etc. everything turned out pretty good.  I have a pretty healthy and happy little boy running around.  

Thank you all for being there  :hugfriend :hugfriend and cheering us on through all of this  :thankyou2

:lovethissite

Sharmin
Title: Re: Rituximab tomorrow
Post by: Kathy11 on March 30, 2009, 10:58:17 PM
Little A :congrats :congrats

I'm so proud of you

Love from Grand ma Kathy
Title: Re: Rituximab tomorrow
Post by: Sharmin on March 31, 2009, 01:12:23 AM
Thank you so much Kathy  :hugfriend :hugfriend

Lil A sends his love to Grandma Kathy  :heartred

Sharmin
Title: Re: Rituximab tomorrow
Post by: Zaini on March 31, 2009, 03:01:51 AM
Hey Lil A,

Now you have aunties and uncles and a grand ma too  :biggrin and and not every one has Grand ma like Kathy,so you are lucky my dear  :wink.

Kathy  :hugfriend

Zaini.
Title: Re: Rituximab tomorrow
Post by: Sharmin on March 31, 2009, 03:32:14 AM
Lil A is very lucky to have such a great family here :)  He says hello to his sis lil Z :)

Sharmin
Title: Re: Rituximab tomorrow
Post by: Kathy11 on March 31, 2009, 07:53:05 AM
To  Zaini,
I love you too ,thank-you :flowers :flowers :flowers :flowers :flowers :flowers :flowers,
I'm grandma to all the little one :biggrin,I'm glad and I do try to identify with you all.



No need to be jealous :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl you are one of their fevorite aunty :hugfriend :hugfriend

we are all so lucky to have each other for moral support.

I agree with Sharmin,   this forum is very helpfull ,we always have someone to share our worries with and this, makes it less troublesome.

Kathy
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 12, 2009, 06:26:43 AM
Dear friends,

I heard something quite amazing last weekend, during the year end hockey party - the parents told me that lil A stood out as the best player on the team.  They were talking about how well he plays, how he scores key goals etc.  The opposing teams often send out one or two players to block lil A, to prevent him from getting to the puck - because they quickly realize that he is a key player on the team.  I was very proud to hear that lil A was considered to be the best player on a team that came in third in our city, and took 2nd place in a tournament involving teams from the entire province.  This tells me that thalassemia can not stop anyone from reaching their personal best - that a thalassemia major child can out play and out perform non thalassemia children.  With proper management - even with this antibody problem that we have dealt with - this disease can be managed and beat.   

One of the great things about knowing that our son is a good athlete - is that it means that he must be healthy.  It also makes him capable and happy - it is great for his self esteem.  We owe most of this to Andy, he has helped us keep lil A healthy in the most difficult of times.  All of the courage and good luck - we get form all of you. 

I wanted to share this success story with all of you - because this success is all of ours  :grouphug

God bless,
Sharmin
Title: Re: Rituximab tomorrow
Post by: T @ r ! Q on April 12, 2009, 09:03:24 AM
Sharmin,

Hats off to you and bravo to lil A on his achievements. He is a source of inspiration and role model for all young Thals and ofcourse you deserve the credit for taking good care of him. Since there is a difference between knowing a path and walking a path and the later is not very easy. This really shows that thals are no longer less than others in any way. All it takes is dedication and sincere commitment. We are very proud of you and your son. :yay
Title: Re: Rituximab tomorrow
Post by: Zaini on April 12, 2009, 09:05:14 AM
Sharmin,

I am so happy for Lil A  :hugfriend I hope every parent and patient in the world would understand that once you accept thalassemia,treat it as it should be,there is no stopping,thals can acheieve anything they aim for  :thumbs .

Zaini.
Title: Re: Rituximab tomorrow
Post by: nice friend on April 12, 2009, 10:34:20 AM
(http://3.bp.blogspot.com/_AugZPnWjSo8/SACs7VgzhaI/AAAAAAAAAVw/jU-P6uYK1iE/s200/Congratulations.gif)
(http://i268.photobucket.com/albums/jj19/beverloo1969/congratulations.jpg)
(http://www.clipartof.com/images/clipart/thumbnail2/17505_star_mascot_cartoon_character_playing_ice_hockey.jpg)
Sharmin,
i m glad to hear this, Little-A is an inspiration for all of us and especialy for those who think that they cant achieve their goals, just bcoze they're thals ,, i m realy inspired to him and his achievement , soo now he's the star player of his team ,, and i can proudly that now we have a star among us ... Best of Luck Little-A , May God Bless you with success in everything that you want to do and He will shower all His blessing up-on you in doing everything... May God Bless you everything that you need ...  Go ahead buddy , you have to set new standards of care treatments and achievements ... :thumbsup ..

Alot of Good Wishes
Best Regards
Take Care
Umair
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 12, 2009, 05:41:49 PM
Thank you all so much - it is all because of your support my friends.  Thals really can do anything that they want to.  I hope that you all achieve all of your goals and dreams  :hugfriend  I will have lil A post a reply to all of the wonderful messages you have all sent to him.

Love,
Sharmin
Title: Re: Rituximab tomorrow
Post by: Pareeshay on April 13, 2009, 08:44:15 AM
Hey Sharmin didi and lil A!
   (http://tbn3.google.com/images?q=tbn:KWKTIwiY2Tdq7M:http://img10.glitterfy.com/graphics/182/congrats_ballon.gif)

soo happy for u :biggrin
best of luck for future :biggrin
xxx
Pareeshay
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 13, 2009, 02:30:03 PM
Thank you so much Pareeshay  :hugfriend :hugfriend

Sharmin
Title: Re: Rituximab tomorrow
Post by: Canadian_Family on April 13, 2009, 09:35:16 PM
Hi Sharmin,

You have every reason to be happy. Your son is a great sport. We wish him continued success in his life.
Title: Re: Rituximab tomorrow
Post by: Manal on April 13, 2009, 11:54:33 PM
Sharmin, i am really so happy and very proud of you and of my sweetie little A, can not imagine how these wonderful news give us all a lot of assurance and support, keep it up. Both of you are an inspiration

Love you so much
manal

 :clapcheergirl :clapcheergirl :clapcheerboy :clapcheerboy :clapcheerboy :congrats :yay :flowers :flowers :flowers :flowers
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 14, 2009, 04:33:56 AM
Thank you Canadian Family and Manal, 
Your encouragement means everything to us  :hugfriend :hugfriend

I hope that Ahmad and Lil Miss A are doing great!

Sharmin
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 16, 2009, 05:09:16 AM
We are waiting for the ritux to take effect.  Lil A received 20cc/kg of blood 1 week ago and today (just one week later) his hg was 104.  The antibodies are present - but ritux prevents production of new antibodies (does not effect those present) - and the existing antibodies exist for several weeks.  I hope that the latest ritux treatment is able to block the production of antibodies - and that the existing ones disappear soon.  He is doing well, he is not affected by this. Your prayers will be needed. 

Sharmin
Title: Re: Rituximab tomorrow
Post by: nice friend on April 16, 2009, 06:19:39 AM
A Messaage for Little-A ,
(http://i383.photobucket.com/albums/oo274/Nice_Friend/aprayer.jpg)
Little-A, You're  always in my prayers...

Best Regards
Take Care
Umair
Title: Re: Rituximab tomorrow
Post by: Manal on April 16, 2009, 07:02:49 AM
You and little A are in my prayers, please be strong. when should you test his HB again ??? How long it takes the rituxmab to take its effect Sharmin, did the doctors of Oakland comment on that??

manal
Title: Re: Rituximab tomorrow
Post by: Zaini on April 16, 2009, 07:16:30 AM
Sharmin,

Please be strong,Little A is always in our prayers,i hope this round of ritux will take care of these antibodies, :hugfriend :hugfriend .Wasn't Lil A doing much better then that,now suddenly this huge drop in hb ???
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 16, 2009, 02:53:33 PM
Thank you Umair, Manal, and Zaini,

The existing autoantibodies can be around for a while (even 2 months).  I am hoping that they decrease quickly and the rituxan prevents the formation of more antibodies.  I wonder if we will need to give him the full course of rituxan or try something harsher (I am afraid to do so because it can be dangerous).  I am praying that this will work.  Feeling a little lost right now.  He is getting a blood test and cross match today and transfusion tomorrow - thank god he will be able to get his tx tomorrow because I was afraid that the hospital was not going to be able to fit him in.

Thanks again friends - your prayers and support are everything.

Sharmin  :hugfriend :hugfriend :hugfriend
Title: Re: Rituximab tomorrow
Post by: Zaini on April 16, 2009, 05:22:41 PM
Be Strong Sharmin,i know its easier said then done,but we all are praying for you,i hope a reasonable solution comes out soon,wishing you luck and sending prayers your way.

Zaini.
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 16, 2009, 06:59:41 PM
Thanks Zaini, I don't know what I would do without you  :hugfriend :hugfriend

His hg today was 109 - go figure?  Still not good for 1 week but better than 104.  I hope that this next tx lasts a lot longer. 

Sharmin
Title: Re: Rituximab tomorrow
Post by: Zaini on April 17, 2009, 03:57:31 AM
Quote
  I hope that this next tx lasts a lot longer. 

I hope so too  :hugfriend .I hope there will be a cure available soon  :pray Solution of all the problems.

Zaini.


Title: Re: Rituximab tomorrow
Post by: Manal on April 17, 2009, 01:50:14 PM
Sharmin, any update????

manal
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 17, 2009, 02:02:38 PM
Lil A is going in for a transfusion today.  His hg was a little higher than we originally thought - but still too low this soon after his last tx.  When they do the crossmatch they also look at the antibodies, at that time we will know if the titers are high right now.  Because he has had ritux, more antibody should not be produced so these titers should decrease and diminish over the next month.  He is looking a little bit more coppery than he was a few months ago, I hope that his iron levels have not risen.  We are working hard at chelating him.  I wonder if Oakland would be willing to increase his exjade dose - as I certainly don't want to increase his desferal. 

Sharmin
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 18, 2009, 08:41:19 PM
I am waiting to hear back from Oakland about his exjade dose.  His color looks darker, I am assuming that his iron level is higher again.  We are going to chelate aggressively to get it back down quickly.  I think we may do desferal 7X a week for a while.  Andy, what are your thoughts?

Sharmin
Title: Re: Rituximab tomorrow
Post by: Andy Battaglia on April 18, 2009, 08:46:17 PM
Sharmin,

I think some extra chelation right now would be helpful. It's best to stay on top of it so you're not always fighting an uphill battle. With the added transfusion lately, he does need more chelation. I hope they can raise the Exjade dose. I think that would help a lot.
Title: Re: Rituximab tomorrow
Post by: Manal on April 19, 2009, 12:04:03 AM
Sharmin, how about IV desferal during transfusion,  wouldn't this help??

manal
Title: Re: Rituximab tomorrow
Post by: Andy Battaglia on April 19, 2009, 12:09:23 AM
I don't think the short period that it takes for a transfusion would be long enough to do much good with IV desferal. It's main use is for longer periods of several days at a time or more, because this will make an impact. An extra night of subcutaneous desferal would have a bigger effect on ferritin than a few hours of IV.
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 19, 2009, 06:04:15 AM
For the next few weeks I will give him desferal 6 or 7 days a week - in the meantime I hope to hear back about the exjade dosage - there is room to increase it and I would like for him to be on the full dose. 

Thanks Manal & Andy,

Sharmin
Title: Re: Rituximab tomorrow
Post by: Zaini on April 19, 2009, 09:16:35 AM
Sharmin,

I hope you'll get the reply soon,it would be better to increase the dose of exjade rather then desferal. :goodluck

Zaini.
Title: Re: Rituximab tomorrow
Post by: nice friend on April 19, 2009, 11:32:28 AM
Hi Sharmin,
Quote
it would be better to increase the dose of exjade rather then desferal.
if he is not having any side-effect to Exjade the  :agree wat Zaini has said , increasing dose of Exjade is better than Desferal as Little-A is in growing age, ( i think, id ont to have complete in-detail explaination bcoze you know much more than me ,so only want to shed light on another aspect of it )  GOOD LUCK  :goodluck ...

Best Regards
Take care
Umair
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 19, 2009, 04:38:19 PM
Thanks Zaini & Umair,

I agree, excessive desferal can effect lil A's growth so it's better to increase the exjade.

Sharmin
Title: Re: Rituximab tomorrow
Post by: Manal on April 20, 2009, 01:50:39 AM
Thanks Andy :wink

Sharmin, hope you will soon hear from them

manal
Title: Re: Rituximab tomorrow
Post by: nice friend on April 20, 2009, 08:16:06 AM
Sharmin,
i hope that his result will be finer than it were last time ... hope to hear some good reports of Lil-A realy soon .. :goodluck

Best Regards
Take Care
Umair
Title: Re: Rituximab tomorrow
Post by: Pareeshay on April 20, 2009, 08:40:43 AM
Hey Sharmin didi!

(http://tbn0.google.com/images?q=tbn:WUBIQCcWOJ4PiM:http://www.graphicsarcade.com/glitter_text/good_luck/good_luck_graphics_4.gif)

m praying for lil A!

best,
Pareeshay.
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 20, 2009, 02:09:55 PM
Thanks Manal, Umair and Pareeshay  :hugfriend

Sharmin
Title: Re: Rituximab tomorrow
Post by: Dori on April 23, 2009, 09:55:11 AM
Hello Little A.

GOOD LUCK!!!!!!!!!!!!!!!!! I am sure you can do it as well. I have just heard that my ferritin dropped in 1.5 months from 1500 to 1012. We can beat the iron! (I have had more transfusions during that time, because my hgb is skiiing a little to fast down the hill)

I wrote this to my friends this morning:

Don't let the iron win and manage your life, but fight the fight, be in control and rule over the iron!

I think that my non patients friend believe that I am crazy now, but that's their problem. Maybe some day they will get the picture.

[I used a signature of one of our members too. I wrote it like this: I hope that I soon will understand that deironing is not a burden, but a lifestyle  It will take still many years before I will be able to say "PK def. is not a burden, but a lifestyle". ] Whose signature is this?

Tell your mommy and daddy to take you out for dinner when you are getting the control over the iron.  :winkblue

 :hugfriend

Dore
p.s. Keep scoring goals for your team! I don't do any sport, but everyone always ask me to bike much slower.  :smileblue That's difficult for me  :grin
Title: Re: Rituximab tomorrow
Post by: Zaini on April 23, 2009, 11:55:38 AM
Quote
[I used a signature of one of our members too. I wrote it like this: I hope that I soon will understand that deironing is not a burden, but a lifestyle  It will take still many years before I will be able to say "PK def. is not a burden, but a lifestyle". ] Whose signature is this?

Its Cherianne's signature :) .

Zaini.
Title: Re: Rituximab tomorrow
Post by: nice friend on April 23, 2009, 12:41:06 PM
Hi Sharmin  Sis , where are you ?? , any updates ?? .. please keep us updated ... i hope , you have got that Selenium related PM ... hope to hear from you very soon ..

Best Regards for Lil-A
Take Care
Umair
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 23, 2009, 02:58:27 PM
Thanks Dore and Umair,

Yes, Umair I did receive the PM - thank god lil A's head ache and light sensitivity resolved on Saturday when his headache and nausea went away.   He hasn't complained about anything since then.  I am giving him 50mg of selenium, which is advised by Dr. Vichinsky and which is usually in vitamin supplements such as Osteocare (I am giving them the liquid which doesn't contain selenium and copper that is why I am giving it to him separately.)  Thanks again for the info, I will be sure to reference it.

Dore, what a sweet message I will have lil A read it when he gets home.  It is very inspiring that you were able to lower your ferritin!  I wish you continued success.

Sharmin  :hugfriend :hugfriend
Title: Re: Rituximab tomorrow
Post by: nice friend on April 23, 2009, 04:12:03 PM
Sharmin ,
 :) its nice to hear that things wasn't that much serious  and vanished off very quickly ... :goodluck Lil-A

Best Regards
Umair
Title: Re: Rituximab tomorrow
Post by: Manal on April 25, 2009, 11:59:19 PM
Sharmin

Did you test the Hb after the last transfusion?????????/

manal
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 26, 2009, 12:19:45 AM
Hi Manal,

Thank you so much:) The morning after the last transfusion his hg was 149. m We haven't tested since then - so far he looks good.  His next blood test will be May 6th and transfusion is booked for May 8th.  I am hoping that the antibodies will decrease by then because of the last rituximab treatment - the antibodies he would have had before rituximab should be breaking down now.    I am hoping for the best. 

Sharmin  :hugfriend

Title: Re: Rituximab tomorrow
Post by: Manal on April 26, 2009, 12:24:31 AM
He is in my prayers Sharmin and i really hope that everything will go the best it can be :hugfriend

manal

Title: Re: Rituximab tomorrow
Post by: Andy Battaglia on April 26, 2009, 12:33:04 AM
I'm really hoping that little A's previous transfusion was just a case of not all units of blood are equal and that it broke down faster than normal because of that. Perhaps it was a bit older or perhaps not all donors are equal. We will soon see if it was an isolated occurrence.
Title: Re: Rituximab tomorrow
Post by: Zaini on April 26, 2009, 06:55:46 AM
Quote
We will soon see if it was an isolated occurrence.

I hope that's the case,my prayers are with you and Little A  :hugfriend

Zaini.
Title: Re: Rituximab tomorrow
Post by: Sharmin on April 26, 2009, 07:40:01 AM
Thank you  :hugfriend
Title: Re: Rituximab tomorrow
Post by: T @ r ! Q on April 26, 2009, 07:46:07 AM
Good luck lil A, i hope things get well for you soon.
Title: Re: Rituximab tomorrow
Post by: nice friend on April 27, 2009, 08:40:02 AM
Quote
I hope that's the case,my prayers are with you and Little A
Quote
Good luck lil A, i hope things get well for you soon.
Thinking and praying the same for you Lil-A , Best of Luck ...

Best Regards
Take Care
Umair
Title: Re: Rituximab tomorrow
Post by: marziya on April 28, 2009, 11:37:13 AM
Praying for lil A .Hope he responds well.
Title: Re: Rituximab tomorrow
Post by: Dori on May 05, 2009, 12:36:11 PM
The morning after the last transfusion his hg was 149. m We haven't tested since then - so far he looks good.  His next blood test will be May 6th and transfusion is booked for May 8th.

Sharmin  :hugfriend



Do you always check your son's hgb after a blood transfusion? We have never done this, but especially this weeks I am very curiious about the after tx level of hgb.

I hope he is doing well,

Dore
Title: Re: Rituximab tomorrow
Post by: Manal on May 05, 2009, 03:36:32 PM
Sharmin,

Wishing you all the luck tomorrow in the hb test,please keep updated

manal
Title: Re: Rituximab tomorrow
Post by: Sharmin on May 05, 2009, 10:32:28 PM
Thank you my dear friends, he seems to have done well during the last 3 weeks.  I will post his hg tomorrow.  He had his last tx on April 17th and he is booked for tx on May 9. 

I hope that you all are doing well - love to everyone :)
Title: Re: Rituximab tomorrow
Post by: Canadian_Family on May 05, 2009, 11:42:59 PM
Hi Sharmin,

Great news, we are crossing our fingers for the good news tomorrow. Best of luck.

Title: Re: Rituximab tomorrow
Post by: Sharmin on May 06, 2009, 09:15:53 PM
Thanks Canadian Family  :hugfriend

Lil A's hemoglobin today (3 weeks post) is 109.  We are waiting to see when the doctor wants to transfuse him.  He is booked for Friday but I think that he may be good until next week.  Hoping for the best - thank you all for your prayers and constant support.

Love you all,

Sharmin
Title: Re: Rituximab tomorrow
Post by: Sharmin on May 06, 2009, 09:39:27 PM
Hi guys - the doc said to wait until next week to transfuse :)

Sharmin
Title: Re: Rituximab tomorrow
Post by: Zaini on May 07, 2009, 04:31:38 AM
Hi Sharmin,

Thats good ,i am happy for Lil A,four weeks post transfusion is a good interval ,isn't it.I hope he'll continue to do well. :hugfriend

Zaini.
Title: Re: Rituximab tomorrow
Post by: Sharmin on May 07, 2009, 05:12:54 AM
Hi Sharmin,

Thats good ,i am happy for Lil A,four weeks post transfusion is a good interval ,isn't it.I hope he'll continue to do well. :hugfriend

Zaini.

Thank you Zaini  :hugfriend

Yes, 4 weeks is ideal.  My hope is that he can go four weeks with a smaller volume of blood soon - but I am just very glad that he may be able to have a good hg at 4 weeks.  I hope and pray that his hg is close to 100 next week.    I am really looking forward to having his iron levels come down further and to be able to sustain him on exjade.  I hope to stop using desferal now. 

Sharmin
Title: Re: Rituximab tomorrow
Post by: Dori on May 07, 2009, 07:52:05 AM
I am glad for the outcome! 4 weeks must be so great! Enjoy this 4th week!

 :hugfriend

p.s. tomorrow it's my turn to have one....with an only 16 days interval (<5.3 mmol/l)
Title: Re: Rituximab tomorrow
Post by: Manal on May 07, 2009, 06:02:45 PM
Congratulations dear for the good news, i hope that soon you can reach a less volume each time he transfuse, best of luck :hugfriend

manal
Title: Re: Rituximab tomorrow
Post by: Sharmin on May 08, 2009, 03:44:28 PM
Manal,

Thanks my friend  :hugfriend  He seems to be doing well.  He is sooooo obsessed with soccer these days - he even keeps his soccer ball next to his bed at night and he gets upset if it is raining (because soccer has to be cancelled when it rains). 

I hope that Ahmad is doing better.  Is he looking less tired? 

Sharmin
Title: Re: Rituximab tomorrow
Post by: Manal on May 08, 2009, 04:06:59 PM
You are welcome Sharmin :hugfriend, today is much better but it seems that his HB has dropped because he looks very pale

manal
Title: Re: Rituximab tomorrow
Post by: Sharmin on May 08, 2009, 11:56:16 PM
Manal,

I am glad that he is doing better.  I hope that his hg has not dropped too much, sometimes they appear lower than they are when they are sick.  Lil A sometimes looks pale when he is sick even though his hg is okay.  I hope that he completely recovers soon.

Sharmin
Title: Re: Rituximab tomorrow
Post by: Sharmin on May 12, 2009, 12:50:19 AM
Lil A has a blood test tomorrow - this is the fourth week since his last tx (at 3 weeks his hg was 109).  I hope that his hg is good and that they do not find any antibodies when they do the cross match. 

He was sick for two days this weekend - fever and headache but he doesn't look very anemic (hoping....). 

Thank you all for your support - I hope that everyone is doing great :) 

Sharmin
Title: Re: Rituximab tomorrow
Post by: Manal on May 12, 2009, 04:11:51 AM
Best of luck Sharmin,  :hugfriend

manal
Title: Re: Rituximab tomorrow
Post by: Zaini on May 12, 2009, 06:32:00 AM
 :goodluck :hugfriend

Zaini.
Title: Re: Rituximab tomorrow
Post by: Sharmin on May 12, 2009, 04:17:03 PM
Thank you everyone for your wishes.  His hg today after 4 weeks is 114.  That is strange considering that his hg last week was 109 (one of them must be an error).  He will receive a transfusion on Thursday because we already cross matched him, assuming that he would be low today.  To be honest his color is still looking really good.  I am guessing that he could have gone another week or two before needed a transfusion. 

Thanks again for the support,

Sharmin
Title: Re: Rituximab tomorrow
Post by: Canadian_Family on May 12, 2009, 04:30:25 PM
Great News Sharmin. I am so glad that Little A is doing well.
Title: Re: Rituximab tomorrow
Post by: Sharmin on May 12, 2009, 04:42:05 PM
Thank you Canadian Family, I hope that lil Ms. A is doing really well too :)
Title: Re: Rituximab tomorrow
Post by: Andy Battaglia on May 12, 2009, 07:05:34 PM
It's looking really good. I hope this means the second round of Ritux is working.
Title: Re: Rituximab tomorrow
Post by: Sharmin on May 12, 2009, 09:11:34 PM
Thank you Andy,
We owe it all to you  :thankyou2

Sharmin
Title: Re: Rituximab tomorrow
Post by: Manal on May 12, 2009, 11:28:06 PM
Wwoooooooooo Sharmin :happydance, i am really soooooooo happy, it always makes me happy hearing good news about our children

manal

 :yay :cheer :cheer :cheer
Title: Re: Rituximab tomorrow
Post by: Dori on May 13, 2009, 06:02:45 AM
I am glad. I had a question: is r. a kind of steriod? Like presnison? Why i ask? I know this medication is used my aplastic anemia patients.

AdiĆ³s, Dore
Title: Re: Rituximab tomorrow
Post by: Zaini on May 13, 2009, 08:34:53 AM
That's really really good Sharmin  :hugfriend getting transfusion after 5-6 weeks would be every thal's dream :) I am really happy for Lil A  :hugfriend.

Zaini.
Title: Re: Rituximab tomorrow
Post by: Sharmin on May 13, 2009, 02:54:14 PM
Thank you Manal, Dore and Zaini  :hugfriend
I hope that this continues to be the case. 

Dore, rituximab is not a steroid,  it is a protein which is itself an antibody specific for Bcells (the cells that create antibodies).  I hope that this makes sense.

Sharmin

Title: Re: Rituximab tomorrow
Post by: Dori on May 14, 2009, 07:02:35 AM
Thank you Manal, Dore and Zaini  :hugfriend
I hope that this continues to be the case. 

Dore, rituximab is not a steroid,  it is a protein which is itself an antibody specific for Bcells (the cells that create antibodies).  I hope that this makes sense.

Sharmin


Si. I found it's used by non-hodgington (spelling) too. It's an interesting medication.
Title: Update
Post by: Sharmin on May 14, 2009, 04:49:25 PM
Hi friends,
Lil A is waiting for his transfusion.  His ferritin is 1085 and his ALT is down again, it is now 28.  The doc thinks that it may be a good idea to lower his tx volume.  That would help to lower his ferritin level further.  If his ferritin falls below 1000 we can decrease his desferal.  I really hope that we can do that soon.  I also hope that we can eventually give him the max dose of exjade soon and take the desferal away.  My hope is that this time his auto antibodies remain suppressed. 

Before the tx he is having another blood test to confirm the hg (it was 114 on Tuesday).

Thanks again everyone for your support  :hugfriend

Sharmin
Title: Re: Rituximab tomorrow
Post by: Dori on May 14, 2009, 07:38:57 PM
GOOD LUCK!!! I hope the tx will go easy and quick? What's the speed? mine is 90ml/h = 3hrs
Title: Re: Rituximab tomorrow
Post by: Sharmin on May 14, 2009, 08:12:38 PM
Thanks Door.  He is getting blood 90ml/hr as well.  He is getting 413ml of blood today.  So far the tx has gone well.  How are you?  Hope things are better. 
Title: Re: Rituximab tomorrow
Post by: Sharmin on May 14, 2009, 09:12:30 PM
The blood test today revealed that his hg today is 110 - still really good for 4 weeks post :) Thank god:)
Title: Re: Rituximab tomorrow
Post by: Manal on May 14, 2009, 11:05:20 PM
Sharmin, why didn't you postpone the transfusion since he was 11????

I am also happy to know about the ferritin, soon he will be under the 1000s :yes

manal
Title: Re: Rituximab tomorrow
Post by: Sharmin on May 14, 2009, 11:56:55 PM
Hi Manal,
Ideally I would have waited another week or two to transfuse, but at four weeks the docs assumed that his hg would be lower and so they did a crossmatch.  When he is crossmatched they take a lot of blood (because it is harder to find a match for him) - they felt that the 114 hg from Tuesday may have been wrong.  Today the doctor asked for a second blood test to see if the hg was still in the same range - at this time the IV was already on.  When the hg came back as 110 the doctor decided to transfuse 15cc/kg rather than 20cc/kg.  If we waited another week we would have to do another crossmatch and I didn't want them to waste so much blood. 

Hopefully this transfusion will last him 4 weeks or more.  I am pretty happy about things right now.  It is nice to see his ferritin come down even before the transfusion volume and frequency decreased, that is a good sign.  I hope that the ferritin continues to decline.  The lower ALT value also indicates that we can increase his exjade. 

We owe all of this to the support we get on this site!  Thank god we had access to all of this information!

Sharmin
Title: Re: Rituximab tomorrow
Post by: Canadian_Family on May 15, 2009, 12:14:44 AM
Great News Sharmin, I can imagine how relieved you must be feeling.

This website definitely making difference in so many ways and what a wonderful group we have.


Title: Re: Rituximab tomorrow
Post by: Manal on May 15, 2009, 12:25:10 AM
Yes i definetly agree :happyyes :happyyes

Hats off to each and every member here :clap :clap :clap :clap :clap :clap

manal  :grouphug
Title: Re: Rituximab tomorrow
Post by: Sharmin 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! 


Title: Re: Rituximab tomorrow
Post by: nice friend 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
Title: Re: Rituximab tomorrow
Post by: Sharmin 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 :) 
Title: Re: Rituximab tomorrow
Post by: Zaini 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.
Title: Re: Rituximab tomorrow
Post by: Sharmin 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
Title: Re: Rituximab tomorrow
Post by: maha 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
Title: Re: Rituximab tomorrow
Post by: Dori on May 19, 2009, 07:41:28 PM
Sharmin,

Did you read this article: http://www.thalassemiapatientsandfriends.com/index.php?topic=2867.0  :shocked
Title: Re: Rituximab tomorrow
Post by: Poirot 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
Title: Re: Rituximab tomorrow
Post by: Dori 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.
Title: Re: Rituximab tomorrow
Post by: Sharmin 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
Title: Re: Rituximab tomorrow
Post by: Poirot on July 02, 2009, 11:09:48 AM
That's great, Sharmin.

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

Cheers

Poirot