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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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  #1  
Old Wed May 4, 2011, 07:36 PM
slip up 2 slip up 2 is offline
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9 years of red blood transfusions

Met a fellow to-day, who has MDS and has had transfusions for 9 years and he is still laughing.....no other medication only red blood....
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  #2  
Old Thu May 5, 2011, 12:19 AM
Neil Cuadra Neil Cuadra is offline
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That's amazing. Any idea how many transfusions he's gotten over the 9 years? If it's a lot and he hasn't needed treatment for iron overload then I wonder where all the iron in that transfused blood went!
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  #3  
Old Thu May 5, 2011, 10:40 AM
slip up 2 slip up 2 is offline
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He said once a week sometimes 2 a week and the odd time once every 2 weeks....I asked him if he had ever taken any other medication..did not want to ask about iron overload...but he said no other...he is Asian, so maybe lots of black tea....I even asked the nurse she said that he was right...
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  #4  
Old Fri May 6, 2011, 12:05 AM
Neel Neel is offline
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thats amazing

9 yrs and once every week makes it arnd 400-450 units, or 120 liters of blood. Thats huge and without any complication. I guess the doctors have to reconsider there thinking in regard to iron over load , maybe iron over load is the fear created by the doctors then, or maybe his boddy is natural iron chealator.

Regards,

Neel
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Father age 64 diagnosed with MDS RAEB-2, with 15%-18% blasts in October 2010. Only had blood and platelet transfusions. Ayurvedic treatment which showed result for arnd 5 months. Started Tahlidomide 100 mg started on 22 nd April 2011. Revolade 50 mg started on 2 nd april 2012.
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  #5  
Old Sun May 8, 2011, 04:18 AM
Helen Robinson Helen Robinson is offline
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9 years of red blood transfusions

Please do not be tempted to ignore iron overload. My husband had 152 transfusions over eight years and he chelated with desferal. After a cardiac arrest he was checked to see if the iron had affected his heart muscle and it was ok. Unfortunately microscopic iron was interfering with the electric signals in the heart and the tachicardia did not respond to treatment. He left us five months ago after 49 years of a wonderful marriage.

Please do all you can to reduce your iron. We tried everything including exjade which caused hepatitus.

Best wishes to everyone on their journey. Enjoy every moment you can and keep positive and smiling.

Helen
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Husband, MDS 5q- 2003. Transfusions,desferal infusions, Revlimid 2007 partial remission. David passed away Nov 2010 with untreatable heart arrythmia probably from iron overload.
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  #6  
Old Mon Jun 6, 2011, 11:42 AM
celebrations celebrations is offline
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Neel and others,
"or maybe his boddy is natural iron chealator."
Was this a joke or have you ever heard sth. about this?
Then please tell me !!!

I know an American with RARS who has been on transfusions for 13years now.
He has got over 700 tx now, taking Exjade every day to chelate. His frequecy is 8-10 days.
I myself had my 101st transfusion a week ago. Frequency all 15-18 days, taking Exjade 1000mg/d.

Iron-overload is a very serious problem when transfusion dependent.
Iron chelation will save your life.

Best wishes, Bergit
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  #7  
Old Mon Jun 6, 2011, 07:11 PM
freedom99 freedom99 is offline
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Location: Leamington, Ontario, Canada
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Mega RBC Transfusions

I can't believe the stories of all thes RBC transfusions.
Totally radical.
What a wacky disease and some wacky bodies.
Makes us all a bit more positive and stand up and be counted amongst the living.
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Wife 63, June 2010 MDS (refr anemia - excess blasts type-2) PLTs 11,000/μl with giant forms 2 TF/wk. Hgb kept at 80g/l with 1TF per 2 weeks. 9% blasts 2 cytogenic abnormalities del(5)(q22q35) + inv(20)(p11.23q11.21) 3 cycles Vidaza no effect. June 2011 to AML WBC to 67 blasts and Aur rods in blood.
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  #8  
Old Sat Jun 11, 2011, 06:48 AM
navn29 navn29 is offline
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Hey NEEl! has ur father responded to d treatment....pls let me knw d address of d doc if he's been a help. My bro is a case of MPN-UC
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  #9  
Old Sat Jun 11, 2011, 11:19 PM
Lori. K Lori. K is offline
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I've been getting Blood transfusions every 4 weeks for red blood cells for 12 years now!!
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25 yrs old, Diagnosed with Pure Red Cell Aplasia in January 1999 At age 13, Monthly blood transfusions of Red blood cells Every 4 weeks, Takes Exjade 1750 MG. Started Horse ATG 6/20/11; Taking Cyclosporine 200MG twice a Day!
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