Discussion Forums > Working Towards a Cure
The Carao Trial - How effective is it & who benefits most etc.
Zaini:
Thanks Kathy and Ayesha,
Is Dr Usman on the panel of Aga khan?What's his full name? once i tried to get dr Khursheed's appointment ,but i was told that for peads heamatology,i can only visit dr zehra,although i know kids who are under supervision og dr Khursheed.
Zaini.
Gabri:
--- Quote from: sharmin on October 31, 2008, 08:26:55 PM ---Hey guys,
My son's doctor has asked me whether we should begin doing bi weekly transfusions (smaller transfusions, slower rate) or whether we should continue with the monthly ones. This time he received a full transfusion (on Monday it will be 2 weeks) - so hopefully he will go another couple of weeks. After that I am considering the biweekly schedule. Do you guys think that it is a good idea?
--- End quote ---
Hi Shamin,
long time ago I've posted this in an other place. It could help in finding an answer to your question.
I think it will depend where you put your focus on, the cost, blood consumption in a year, quantity of iron load or maybe the time you will spend going to hospital in a year........
I try to make an example.
Supposing we have three thal. major patient each one with same mutation, would mean they need same quantity of blood. But each one have a different frequency to be transfused.
The first (A) will go every 2 weeks receiving 1 unit of blood
The 2. (B) every 3 weeks getting 2 units
The 3. (C) receives every 4 weeks 3 units
Remember, we supposed they have the identical disorder.
Who do you think will have the highest iron loading after a year (52 weeks)????? :huh
Let's make little bit of mathematic
A) 52 weeks : 2 weeks = 26 times he goes to get transfusion
26 x 1 units = 26 units of blood in one year.
Each unit of blood contains 200- 225 mg of iron, so the annual iron load will be 26x 200-225 = 5200-5850 mg
B) 52:3=17,33
17,33 x 2 = 34,66
34,66 x 200-225 = 6932-7798,5 mg
C) 52 : 4 = 13 13 x 3 = 39
39 x 200-225 = 7800-8775 mg
Summery:
Case Frequency of trans. units per trans. times of transf. per year units per year iron load per year
A be-weekly 1 26 26 5200-5850
B three-weekly 2 17,33 34,33 6032-7798,5
C monthly 3 13 39 7800-8775 [/color]
Compared with Thal A), thal C) will receive 13 units more and accumulate 2600-2925 mg iron more within a year. How much it will be in ten years? How much more drug Thal C will need to get same iron level as thal A)? :dunno
I think it is good to have these facts in mind and consider all other factors to make an individual decision. Maybe you can go three-weekly for transfusion.
The relation between frequency of transfusion and iron load was described in medical article from Piomelli et al. Ann. N. Y. Acad.Sci. 445, 256-267 in 1985
God bless you
Gabri
Manal:
Thank you Gabri so much for this clarification, how come I never thought it goes this way. So taking one unit every two weeks means 400mg of iron in a month while taking three units every month means 600mg of iron, so definetly bi monthly is the best
It looks so simple this way but if this should be decreasing iron overload why it is left to patients to decide on their own? i think i have lots of questions but can not put them in words but i have one which is the rate of hemolysis, does it differ in a child than an adult, meaning that after two weeks is one unit suitable for an adult as well as for child
manal
Sharmin:
Gabri,
Thank you kindly:):)
Sharmin
Gabri:
--- Quote from: sharmin on November 02, 2008, 04:18:23 PM ---Gabri,
Thank you kindly:):)
Sharmin
--- End quote ---
You are Welcome, Sharmin
--- Quote from: Manal on November 02, 2008, 03:18:41 PM ---It looks so simple this way but if this should be decreasing iron overload why it is left to patients to decide on their own? i think i have lots of questions but can not put them in words but i have one which is the rate of hemolysis, does it differ in a child than an adult, meaning that after two weeks is one unit suitable for an adult as well as for child
manal
--- End quote ---
Hemolysis is influenced by to many factors. Therefor it is difficult to compare an adult with an child. Some thal majors have higher hemolysis than other thal majors because of differences in mutation, some kinds off medicines let increase hemolysis (for example antibiotic) also some sicknesses like flue, inflammation....
You will see also differences during a lifetime of a man. I heard often that peoples blood consumption varies. You have to consider the height and weight of people and how active they are. Usually children will receive only one unit per transfusion, when they become teens the often will need two or three units because of his adolescence.
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