I feel i have reached the end of my road.....

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Offline Danielle

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Re: I feel i have reached the end of my road.....
« Reply #45 on: January 31, 2008, 09:38:04 PM »
Were you able to get any, Sajid?  ???

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Offline Ambareen

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Re: I feel i have reached the end of my road.....
« Reply #46 on: February 01, 2008, 12:31:40 PM »
Salaam...

 Thanx a lot Manal, i will keep that in mind and asked my doc. about it as soon as possible...
Ambareen... :)

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Offline §ãJ¡Ð ساجد

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Re: I feel i have reached the end of my road.....
« Reply #47 on: February 01, 2008, 03:19:19 PM »
Hi Danielle,

I will go tomorow for my TransX and since it will be Saturday; hopefully he will vist J.S.F and examine my case. He usually vists on Saturday.

So, let's hope for the best :thumbsup
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Offline Danielle

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Re: I feel i have reached the end of my road.....
« Reply #48 on: February 01, 2008, 10:35:38 PM »
Does that mean you haven't been able to acquire any Desferal?  ???  Please let me know if you cannot get any, because I will see what I can do for you.   :hugfriend

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Offline §ãJ¡Ð ساجد

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Re: I feel i have reached the end of my road.....
« Reply #49 on: February 02, 2008, 12:34:42 PM »
Hi Danielle!

Desferal?!? Oh, I was talking about combination therapy L1 with Desferal. I got the desferal that day and boy! they sure are short! They got about 4000 Desferal instead of what they usually get and they freshed out within 10 days!

Today I had a transfusion and the Hemo visited us but he didn't seem to be convinced in changing anything for me so I am still on Desferal at the usual dose.

Thanks for your generous offer though! :hugfriend
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Offline Hope

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Re: I feel i have reached the end of my road.....
« Reply #50 on: February 04, 2008, 09:11:16 PM »
Sajid,

I think you should talk to your Hemo for more intensive chelation therapy for you. I am not a doctor but a mother with a Thal Major child and after reading available resources on the internet, I truely feel you need much more intense chelation than what you are using now.

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Offline §ãJ¡Ð ساجد

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Re: I feel i have reached the end of my road.....
« Reply #51 on: February 05, 2008, 07:23:41 AM »
Hi Hope!

Thanks for your kind words. I don't think there is anything else that can be done more extensively than what I am getting. After all, I am the only member that takes out the most of the Desferal supply than anyone else at JSF :biggrin. I can't start Kelfer due to low blood counts and I'm allergic to Desferal via I.V

Asurna(Generic Exjade) was a ray of hope but it seems to be more of a gamble than hope.

In the end it all adds up to my health and how am I feeling; and I feel like a million bucks :grin as of now I don't feel sick or anything wrong. So, everything is "Just fine" and I hope that the next S.F readings will be much better, provided I get continuous supply of Desferal.

Thanks again everyone for your concerns. :grouphug
اَسّلامُ علیکم Peace be Upon you
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Offline Hope

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Re: I feel i have reached the end of my road.....
« Reply #52 on: February 05, 2008, 04:22:43 PM »
Sajid,
I hope your next SF reading comes out much lower.

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Offline Eponine

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Re: I feel i have reached the end of my road.....
« Reply #53 on: February 06, 2008, 12:11:35 PM »

 This is the first time that im reading about combining EXJADE and desrafal together, coz in our centre its said to be dangerous to do that...!!!

Hi Ambareen

Many studies are still ongoing regarding the combination therapy of Exjade and Desferal. Some think that there is not much use of it becuase both Exjade and Desferal gets rid of Iron in the liver rather than the heart. So its like taking two different types of medication for the same illness.

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Offline Miaki

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Re: I feel i have reached the end of my road.....
« Reply #54 on: February 06, 2008, 01:41:00 PM »
Hi once again,

I have also not heard of studies with Exjade and Desferal as Epomine mentioned that yes they both work the same organ (liver)

They should, if they have not started already a study of Exjade and L1, Exjade for the liver and L1 for the heart. Now wouldnt that be wonderful  :biggrin

Miaki


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Offline Danielle

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Re: I feel i have reached the end of my road.....
« Reply #55 on: February 07, 2008, 07:23:21 AM »
I thought they found that Exjade removed iron from the heart?  ??? 

Nice to see you around, Miaki.   :hugfriend

Re: I feel i have reached the end of my road.....
« Reply #56 on: February 07, 2008, 03:18:13 PM »
No from all articles and papers submitted up to today, the ONLY chelator which has been proven to remove iron from the heart is L1 (deferiprone)

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Offline Danielle

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Re: I feel i have reached the end of my road.....
« Reply #57 on: February 07, 2008, 06:32:09 PM »
I'm on my laptop while getting blood right now, and since I have been extremely bored out of my mind, I thought I'd read a little more about it, and I found a lot of literature that suggests that Exjade does remove iron from the heart.  :)

Here's one of the articles...

http://www.drugs.com/clinical_trials/once-daily-exjade-shown-remove-toxic-iron-heart-liver-according-data-presented-ash-3005.html

And here's a quote taken from that link:

Quote
At a dose of 30 mg/kg, Exjade lowered both heart and liver iron levels in most patients," said Dr Farrukh Shah, Consultant Haematologist, The Whittington Hospital NHS Trust. "These data add to the growing body of evidence that Exjade successfully removes iron from the heart.

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Offline Zaini

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Re: I feel i have reached the end of my road.....
« Reply #58 on: February 08, 2008, 01:16:54 PM »
L1 and Exjade !!!!

It would be thunderful  :biggrin no more needles.

ZAINI.
^*^Xaini^*^

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Offline maryo0m

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Re: I feel i have reached the end of my road.....
« Reply #59 on: February 10, 2008, 12:40:43 AM »
Hi :wavey
I just wanted to say that no matter what you should never give up I know its hard but you have to think positive and trust me that will change you and the way you feel  :wink

Its great to hear that you took classes Im so proud, But Plz re think about going to do a bone marrow transplant because at your stage it might be risky with so weak bones.

I'll tell you somthing plz plz pllllllllz dont give up I bet ur a strong fighter  :kiss :getwell

wishing u the best
------------Spread your wings and fly-----------

 

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