IV desferal

Sharmin

4155
Gender:
Little A

Andy,

As you know we are about to start a second round of ritux for little A. The first round was successful in that it he is free from prednisone - previously he required bi weekly transfusions often dropping to hg of 79 within 2 weeks. After the ritux treatment last summer his transfusion requirement is 20cc/kg every 3 to 4 weeks and most of the time his hg is around 10 before tx. The goal is to reduce his tx requirement to 14-16cc/kg every four weeks and a pretx hg of 10.

A second goal is to reduce his iron levels below 1000 so that we can stop or minimize desferal so that he can grow. Right now he is receiving desferal 5X week, 12hrs a day along with daily exjade. This is a lot of chelation and we don't want it long term. Once his tx requirement is lowered (hopefully the ritux will do that - the doc feels that it will because round one was quite effective even thought it wasn't perfect) we are hoping that maintenance will be easier.

My question is whether IV desferal would be a good idea for little A to drastically bring down his iron levels all at once rather than chasing them down for a long time with all of this chelation. His current iron levels are 1545. We can get his iron levels below 1000 quicker this way and this way we can reduce his desferal requirement to 2 or 3 times a week. With reduced tx requirement (hopefully) maintenance will be easier. I hope that I am making sense. Should we discuss IV desferal with our doctor?

Thanks Andy,
Sharmin

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Sharmin

Andy Battaglia

8793
Gender:
Will thal rule you or will you rule thal?

Re: IV desferal

« Reply #1 on: March 08, 2009, 10:12:20 PM »

Sharmin,

Unless the SQUID had showed iron accumulation in the heart I would not suggest IV desferal. The concern about side effects of chelators when iron levels are already low, would keep me cautious. You don't want to take a chance on compromising his hearing. This is one reason that the hydrazone compounds are so interesting. They showed great potential for safety and effectiveness at low iron levels, and by keeping the iron so low, it helped extend the life of red blood cells that are destroyed by iron oxidation. I would really like to learn more about the direction of research into hydrazone.

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Andy

All we are saying is give thals a chance.

nice friend

Thalassemia Major
2836
Gender:
If I Can, Why Not You??... If I Can U TOO !!!...

Re: IV desferal

« Reply #2 on: March 08, 2009, 10:58:42 PM »

Hi Sis ,
Sorry for an out of topic post but i wana say that to Little-A , Best Of Luck Little-A

...

Best Regards
Take Care
Umair

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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

Sharmin

4155
Gender:
Little A

Re: IV desferal

« Reply #3 on: March 09, 2009, 05:09:18 AM »

Andy,
I am also very eager to get information about hydrazone. Even starch desferal would be helpful in getting iron levels down quicker because it would be present in the body 24hrs a day for the entire week. It would change our quality of life so much. I will let you know what the docs in Oakland say about these two possibilities.

Umair,
Thank you for your wishes - Little A sends his best to you as well. He wants to send you a message and he will probably do so in the next day or so. Take good care bro

You will both be happy to know that Little A had a great hockey game tonight - they are in the play offs and Little A scored a goal for Big A and Umair mama

Best,

Sharmin

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Sharmin

Zaini

3448
Gender:
Life is too short to be perfect.

Re: IV desferal

« Reply #4 on: March 09, 2009, 05:20:25 AM »

For our Little Champion,

Your Zaini Masee

.

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^*^Xaini^*^

Kathy11

Re: IV desferal

« Reply #5 on: March 09, 2009, 06:36:12 AM »

To Little A,

I'm so proud of you , you are our little champion.Th goals you scores are for all of us,
Keep up with the good energy,
Lots of love from grandma Kathy

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Dori

1443

Re: IV desferal

« Reply #6 on: March 09, 2009, 07:22:22 AM »

I don't give any advice; I only want to say that I had at the end 5x24hours IV desferal at home. I dont know which pump you use, bt here they use easypump. Every two days a new balloon. It is prepared in the pharmacy. Be sure that they dont increase the volume of desferal when you go to 24hours. I have heard that someone had that problem.

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nice friend

Thalassemia Major
2836
Gender:
If I Can, Why Not You??... If I Can U TOO !!!...

Re: IV desferal

« Reply #7 on: March 09, 2009, 02:46:35 PM »

Hey buddies ,
wat a big family Bro,Sis, Bhanja, Mama, Masee and Grandma. wow, thats wat called E-Family

... Just kidding ,...

Dore ,
Thanx for the advice, if you're talking about me, that wat kind of pump i m using, then, i m using syringe pump, company " Medis Italy " and Product Name " Infusa-T ". but now i m planing to start Desferal, IV .

for the advice again ,

Sharmin Sis ,
i m glad to hear that Little-A is contnously scoring goals in every match , Way to go Little-A

and please convey my message to Little-A ,
Hi Litlle-A ,

buddy , for the wishes , its nice to hear that you will right a message for me, i m wating for your message very eagerly , soo please dont forget yaar(buddy) ... oh Yes BTW

Buddy for keeping the habbit alive of scoring goals in every match , way to go buddy , keep it up ,i believe that, one day you will be a professional Ice Hockey player and the Star of this game , and i m sure abt it ... soo , Take good care of your self buddy .. and find A in emoticons below :

Editied : Star*

Best Regards
Take Care
Umair

« Last Edit: March 09, 2009, 04:05:44 PM by nice friend »

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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

Andy Battaglia

8793
Gender:
Will thal rule you or will you rule thal?

Re: IV desferal

« Reply #8 on: March 09, 2009, 03:09:08 PM »

Hey little A, way to go! The Flames could have used your scoring touch last night.

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Andy

All we are saying is give thals a chance.

Sharmin

4155
Gender:
Little A

Re: IV desferal

« Reply #9 on: March 09, 2009, 04:23:17 PM »

Zaini, Kathy, Andy and Umair,

Thank you all so much for your encouragement

He loves playing hockey so much and he gives it his all when he is playing.

He is so proud of himself to be good at hockey:) A few more games in the playoffs and then soccer starts!

Sharmin

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Sharmin

nice friend

Thalassemia Major
2836
Gender:
If I Can, Why Not You??... If I Can U TOO !!!...

Re: IV desferal

« Reply #10 on: March 09, 2009, 04:34:28 PM »

Logged

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

Manal

3100
Gender:
mother of thal intermedia child

Re: IV desferal

« Reply #11 on: March 09, 2009, 10:48:27 PM »

Congratulations little A , i am always proud of you

manal

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Sharmin

4155
Gender:
Little A

Re: IV desferal

« Reply #12 on: March 10, 2009, 07:49:26 PM »

Thank you Manal

Sharmin

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Sharmin

nice friend

Thalassemia Major
2836
Gender:
If I Can, Why Not You??... If I Can U TOO !!!...

Re: IV desferal

« Reply #13 on: March 13, 2009, 08:15:17 PM »

Hi buddies ,
here's a question but bfore that a little contextual introduction :

according to my weight ( 43kg ) i m allowed to take 3 desferal a day .. i m right ??

today when i went to nearest doc's clinic to poke in the canual/Branuala ( watever it called ) they mixed 2 injections in 100ml normal saline . now it is near to finish now . and i want to make last one for today but want to keep it running till time come's to start next day's dose of 3 desferal , (bcoze if it will stop there would b a big chance of needle blockage) .for this purpose i want to make remained 1 desferal ( for today's dose ) in 100ml .. is it wil be right

... or i can make 2 desferal in 100ml and it will not harm me ??.... please andy and all who is reading this message reply ASAP bcoze 1st 2 desferal are near to finish ... question are :

can i make 1 desferal in 100ml ??
or can i take 4 desferals a day for only today

my weight is 43kg ...

Umair

Logged

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

Andy Battaglia

8793
Gender:
Will thal rule you or will you rule thal?

Re: IV desferal

« Reply #14 on: March 13, 2009, 08:29:19 PM »

You could really take 4 vials every day if you wanted. It is not an extreme amount and with desferal, the amount you can safely take is much higher than the average daily dose that people take. It will be no problem for you to take it today. Lisa sometimes took 4 grams (8 vials) in one day.

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Andy

All we are saying is give thals a chance.