• Welcome, Guest. Please login or register.
    October 16, 2018, 12:36:07 PM

  • Login with username, password and session length

Sajid's dove

Tell everyone they can now find this site by typing this into their browser:

thalpal.com

Click to visit us on Facebook


If you have any problems registering or signing in, please send an email to: andy@thalpal.com
Please do not send questions about thalassemia to this address.


Administrators
Andy
Danielle

Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2018





54793 Posts in 5812 Topics by 6051 Members
Latest Member: fatiguessemia

Forum Tip: 
You can now simply type thalpal.com into your browser and it will take you to this site. Tell your friends about this easy-to-remember name.
www.thalpal.com
« previous next »
Pages: 1 Go Down Print
Author Topic: hydroxyurea , why not recommended ?  (Read 4894 times)
gabriellavanessa
New Member
*
Offline Offline

Posts: 18


« on: July 05, 2014, 12:21:12 PM »

hi andy,

my name is lucky, from jakarat,indonesia. One of my child, youngest is thal intermedia, with double heterozigot mutation HbE and Condon 41-42. First I know for Hydroxyurea from Cure2Children Foundation, dr. Lawrence, by email, ask me to try this medicine, before go for BMT. Because this medicine need supervisor, so i consult to my doctor in jakarta, indonesia , Prof.Dr. Bondan. This doctor straightly refuse to use this drug. After that, i send email to Dr. Quah, at NUH Hospital in singapore. From email, dr.Quah agree if i tried this med first. So to make sure, i went to sing, to have a consultation. But again, after we meet, he is not agreed 100%. He said other country used this drug just for economy reason, cause blood transfusion is expensive.

My questions are :
1. Still bothering me, and still make me confuse, do i need to try this med ? cause i see from all article in internet, there is so many person, with thal intermedia, cure with this med.
2. Have any doctor in jakarta,indonesia ,can supervise my child while take this med ?

thanks before ,andy, all your done in this forum, is amazing. thanks to God, can know you, and you share information to us , without return.

thanks
lucky
Logged
Andy Battaglia
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8476


Will thal rule you or will you rule thal?


« Reply #1 on: July 05, 2014, 01:02:02 PM »

Hi Lucky,

Is your child transfusing? What is the normal Hb of the child?

The doctors are wrong and wrong about hydroxyurea, but I need the above info to properly advise you.
Logged

Andy

All we are saying is give thals a chance.
gabriellavanessa
New Member
*
Offline Offline

Posts: 18


« Reply #2 on: July 06, 2014, 03:35:40 AM »

Hi andy,

thanks for reply, now my child almost every 2 month need transfusion, start from february last year. Normal hb around 6.5 g/dl - 7.5 g/dl . She got her first transfusion at 2 year 7 month, now already 6 year old, and already 10 times got transfusion till now.

fyi, now i still find the doctor in jakarta, who can supervise me for take this drug,but not yet found. If cannot find the right doctor, may be I'll encourage my self to supervise my child. I can get the drug in here. And I read so many article that you post about hydroxyurea, but same term i don't understand. Is there simple way for me to do it , if finally i must supervise my child.
 
thanks
lucky
« Last Edit: July 06, 2014, 04:26:28 AM by gabriellavanessa » Logged
Andy Battaglia
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8476


Will thal rule you or will you rule thal?


« Reply #3 on: July 08, 2014, 09:15:47 AM »

The phenotype is intermedia and your child is a good candidate for hydroxyurea. This drug is much more effective in patients who can maintain and Hb of at least 6-7 and the time between transfusions suggests that there is enough hemoglobin production already, that a boost from a hydroxyurea and wheatgrass combination might be enough to greatly reduce the need for transfusions.

I don't like to suggest patients take drugs without a doctor's knowledge, especially since the results need to be monitored, and any possible side effects, such as low white cells also need monitoring. I suggest that your doctor become familiar with Dr Vijay Ramanan of Pune, India and the work that he is currently doing using hydroxyurea in thal patients. Some patients have stopped transfusing completely under his care.

Continue to urge your doctor to allow the use of this drug, ideally at least for one year.
Logged

Andy

All we are saying is give thals a chance.
gabriellavanessa
New Member
*
Offline Offline

Posts: 18


« Reply #4 on: July 08, 2014, 09:46:18 AM »

Hi andy,

thanks for your advise, it's very encourage me.... i will find the doctor who supervise my child. I have any update using this med, i will let you know. Don't get bored ,andy  :-) I'm very appreciate what you have done for thal person. Deep inside my heart , i so grateful to know you, contribution to thal person, without return. GBU

thanks
lucky
Logged
Andy Battaglia
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8476


Will thal rule you or will you rule thal?


« Reply #5 on: July 08, 2014, 09:53:01 AM »

I may be very busy a lot of the time, but I am never bored. Persevere with your doctor. Your child deserves a chance to try this drug. If you are allowed to use, talk to me before starting. Wheatgrass should be taken with it. In fact, even if you can't get approval, wheatgrass tablets would be advised, anyway.
Logged

Andy

All we are saying is give thals a chance.
gabriellavanessa
New Member
*
Offline Offline

Posts: 18


« Reply #6 on: July 08, 2014, 11:06:46 AM »

Hi andy,

sorry again,asking help. I just back from doctor, try to find the doctor who can supervise hydroxyurea.  I lost my paper which contain information what should we care in blood test during the treatment. I get the this website from this forum you post, but i want to print again, i cannot find it. Can u give that link again ?

tahnks
lucky
Logged
gabriellavanessa
New Member
*
Offline Offline

Posts: 18


« Reply #7 on: July 12, 2014, 06:26:55 AM »

Hi Andy,

after see so many doctor in jakarta, indonesia. yesterday, i just make appointment with other hematologist doctor, more logical explanation. She tell me why hydroxyurea is not use in asia, cause pattern of dna , asian thal dna, is not same with india and europe. so useless to try. She said, my child is double heterozigot mutation HbE and Condon 41-42. Condon 41-42, it's mean cannot produce HbA. What is meaning of mutation of condon 41-42 ??

Is this true ? or any body , have mutation condon 41-42 try hydroxyurea and success ?

thanks
lucky
Logged
Andy Battaglia
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8476


Will thal rule you or will you rule thal?


« Reply #8 on: July 12, 2014, 03:40:47 PM »

Codon 41-42 (-TTCT); TTCTTT) is the specific beta mutation.

Many HbE beta thal patients respond well to hydroxyurea. Every single study on hydroxyurea comes away with the same conclusion. The specific thal mutation present is not a good indicator of whether or not hydroxyurea will work on a patient and that in the end, the only way to tell is to try this very safe drug.

Your doctor is being arrogant and stubborn and is basing opposition to use of this drug on nothing more than arrogance. I do not know how you can change the mind of a doctor who prefers arrogant ignorance. There is not a single doctor on earth who can tell you that this drug won't work without having tried it.
Logged

Andy

All we are saying is give thals a chance.
gabriellavanessa
New Member
*
Offline Offline

Posts: 18


« Reply #9 on: July 13, 2014, 06:14:54 AM »

hi andy,

thanks andy, i will find the doctor , who can minotor my child. fyi, next step , we will go to thailand , to make appointment with Dr. Suradaj, at Mahidol Hospital. I Will ask the doctor in thailand to try hydroxyurea

thanks
lucky
Logged
Dharmesh
Global Moderator
Supreme Member
*****
Offline Offline

Location: Virtual World

Gender: Male
Posts: 606



« Reply #10 on: July 17, 2014, 02:35:12 AM »

You can come to India for this purpose....If its possible for u
Logged

Start listening your body, it always gives signs
Isha
New Member
*
Offline Offline

Posts: 12


« Reply #11 on: October 01, 2018, 04:17:07 AM »

Codon 41-42 (-TTCT); TTCTTT) is the specific beta mutation.



Andy,
this codon 41-42 mutation is mild or severe mutation ?
Isha's mother has codon 41-42 & father's mutation was not detected . Transfusion was started at the age of 2 (thalassemia was diagnosed at 1 yr & 6 months of age) , and she is 26 now(regular 12-15 days transfusion now). I wonder whether isha is thal intermedia/major ?
Her Hb stayed lowest at 6.5-7 before 1st transfusion.
Logged
Andy Battaglia
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8476


Will thal rule you or will you rule thal?


« Reply #12 on: October 06, 2018, 12:34:02 PM »

Codon 41-42 is a beat zero mutation. When combined with another codon 41-42, it is transfusion dependent thal major. When combined with other mutations, the outcome is not predictable, and can be anywhere from intermedia to transfusing major status.
Logged

Andy

All we are saying is give thals a chance.
Pages: 1 Go Up Print 
« previous next »
Jump to:  

Powered by MySQL Powered by PHP Powered by SMF 1.1.21 | SMF © 2015, Simple Machines Valid XHTML 1.0! Valid CSS!