The Carao Trial - How effective is it & who benefits most etc.

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.

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? 

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)??

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

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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)? 
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

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

Gabri,

Thank you kindly:) 

Sharmin

Gabri,

Thank you kindly:) 

Sharmin

You are Welcome, Sharmin

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

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. 

Thanks Gabri

manal

Zaini,

The nurses at our hospital confirmed that the standard in Canada is to transfuse a child Little A's size 80cc/hr during the first 15minutes and then increase to it to 90cc/hr after that.  Although higher rates are safe, it is preferred to adhere to this standard as it allows you to stay in control of the situation.  For example, if the child did not react well to the blood - you would know before a significant amount of blood has been administered.  Also, it is easier on the child's heart to transfuse slowly.  The nurses were not able to confirm if there is any association with the size of needle used for a child this size - and the possible damage to red cells if the speed were to be increased (I believe that I have heard this before) - so that is something I will need to confirm. 

Sharmin

Sharmin,

Thanks for the info,my daughter's transfusion is on coming saturday,and i am determined to give her a slow transfusion,i'll manage to go for 3 hours per unit,i just want to check if hb stays longer that way,she is still on carao,and her grand father has asked his friend to order more,but to tell you the truth i am a bit confused now,what with every one emphasising on biweekly transfusions and i was trying to extend the interval during her transfusions,although bi weekly transfusions are not an option for us due to cost problems,but i keep wondering if it was better to let her transfuse every three weeks  .
We have an appointment with her hemo today,can you suggest any question i should be asking,it's in the afternoon,sorry for the late question.

Zaini.

Zaini,

Since your daughter is intermedia I would not suggest more frequent transfusions. It should be based on her Hb each time.

Zaini,

For now I think that the most important thing to manage is the volume and rate of blood transfusion.  If you are on the 4 week schedule make sure that she is getting 14 - 16cc/kg (to the nearest whole number).  The rate should begin at 80cc/kg and after the first 15 minutes it can be 90cc/kg.  Here we hang one unit of blood up to 4 hours. 

In our son's case we are trying to limit his transfusions to whole units for now rather than breaking into a second unit for a few ccs of blood -  we are trying to limit his exposure to donors because of his past experience with antibodies.  For that reason, it is worth it for us to go in every 2 to 3 weeks because we are getting a smaller volume of blood each time. 

For most children the recommendation is still what I listed above.  I will talk to the docs in Oakland about this during our next appointment.  My curiosity about this was raised when I spoke with parents in NY and further when I listened to Dr. Wood and Dr. Vichinsky's lectures.
Most of the benefits my own perception, the accepted standard is still the monthly transfusions. 

I will let you know what they say in Oakland about this:)  I really hope that they pay attention to the rate from now on:)

Sharmin

Thanks very much for your input Andy and Sharmin,

We visited her hemo today,and it was after 5 months,and for once she accepted that our daughter is doing great Alhumdulillah,and she gave me the credit for it,it was a nice change of tone,i told her about carao,she wasn't much interested but she didn't throw any sarcasm either,i told her that all my knowledge comes from THIS forum and she wrote down the site's address.She asked me to meet a couple whose daughter was diagnosed with thal 6 months back,and told me that i should ask more moms at hospital to join the forum,i told her that i have done so but unfortunately no one has joined till yet.When i told her that some of our members went to Singapore conference she was really impressed.

She said no to increaseing ferriprox dosage,saying that your daughter is doing fine with the current dose so stick to it,now what should i do,previously we were doing desferal 3 nights per week,but now i have started 4 nights,to which she didn't object..

Zaini.

Zaini,

I am glad that you had a productive conversation with Zainab's hematologist.  I hope to see more people from your hospital join our site, it will make a big difference in their lives. 

You should be very proud of yourself for taking care of your little girl the way you have, may god give you the courage and strength to continue doing what you do.  May our little angel continue to grow and thrive:)  I am very proud of you:) 

I agree with you, desferal has fewer side effects and is the 'safest' chelating drug, therefore if you are going to increase a drug for chelation it is better to increase the desferal rather than the L1 - because Zainab is tolerating the dose she is currently at so we should not mess around with that.  Little A is on daily exjade and desferal 5X a week, 12 hours a day.  This is the dose that the docs in Oakland put him on.  Once his ferritin is below 1000 he will be on 3X a week desferal, and once his ferritin reaches 600 he will be on exjade alone.   

We have a SQUID booked for February, let's hope for the best.    The antibody screen on his last blood test came back as NEGATIVE last time, so let's hope that it stays that way and his transfusion requirement remains low.... 

I think that it would benefit your daughter to have her ferritin levels below 1000 before she enters adolescence - the years in which children grow and develop.  That is why I am being very aggressive with my son's chelation right now because I want him to grow and develop normally - and I don't want iron to be deposited in (most importantly his heart, liver, pancreas) his hormone producing glands during these years.  I think that this should be a priority in all kids in this age group - to get the iron levels as low as safely possible.  We are lucky that our kids are on combination therapy - 4 or 5 days of desferal is quite low and they can (god willing) escape most of the side effects of the drug - while maintaining good hg levels.   

Sharmin

Thanks a lot Sharmin,I couldn't have done it with out you and with out this forum  ,I am trying hard to get her ferritin down,to keep it below 1000 all the time,right now there is a bit availability issue with desferal,just pray that we get desferal as soon as possible,i keep bugging my hubby,but he can't do much if it's not available in the market.

When did you last check Little A's ferritin? best of luck with the SQUID.

Zaini.

Zaini,

How long has this issue been going on, the difficulty in obtaining desferal?  Do you have any desferal at all? 

I also don't know if I agree with the doc that ferritin needs to be below 1000 before beginning exjade.  I commented in the following thread:

http://www.thalassemiapatientsandfriends.com/index.php?topic=2271.msg20389#new

Please keep us posted on the desferal issue.  Desferal is the safest and best understood chelator, I hope it continues to be available. 

Sharmin

There should be something done to solve this problem Zaini, i assume many are suffering from the same situation. Some people would not tolerate Asunra/exjade for a reason or another and desferal should be available . Is there a any governamental place where you can send a petition oranything telling them that even if Asunra is cheap, some people for medical reasons will not stopusing desferal.

There  should be something done her. We can not repeat again what happened with Sajid

manal