Wish us luck !!

Hi Zaini & Manal ,
Ice Tea i m talking about is available in powder like form (in sachet ) and you always have to prepare that at home , .. i will let you know complete recipe of that really soon ( ASAP)

Best Regards
Umair

Hi
Its getting really warm here too. And I make iced tea at home. Boil 4 glasses of water, add a tea bag a piece of grated ginger, few sprigs of mint and sugar and lemon to taste and cool it . My family loves it including Hassan  . I am hesitant to give it to him because of the lemon and we usually have it in hiding. Is it ok to give it in between meals?

thankyou
maha

Maha, when vitamin C is heated, it is broken and is no more useful, i.e does not do its function.

Even i have read once that if you have a fresh orange juice and you just shake the bottle very hard, it is broken too cause it is a weak vitamin in composition

http://www.thalassemiapatientsandfriends.com/index.php?topic=1706.0;highlight=citric+acid

manal

Hi Maha,

I agree with Manal.  Also, citrus should not be avoided because it has many helpful properties. Especially if it is between meals.  The tea sounds delicious by the way!

Sharmin

Manal,

I have never heard about hydrea and transfusion going together,i'll definitely ask her hemo about that,the doctor who asked me to start hydrea ,said that we'll have to stop transfusions and let he hb drop to 8 and then hydrea would be started.

Zaini.

It is better to take tea with meals as it helps to inhibit iron absorption, while lemon is best taken between meals so that it doesn't add to iron absorption. Ice tea without lemon could be taken at meals and with lemon between meals. Thals do need vitamin C but can only take low doses so it's best to get it from foods like citrus, used in moderation.

Zaini,

I am not sure but I was told by the thalassemia center (Sick Kids) in Toronto that transfusions are completely stopped and hemoglobin is allowed to drop significantly before hydrea is started.  I believe that they also said that transfusions are not given with hydrea because transfusions suppress the marrow. 

I could be wrong.  Andy, do you know more about this?

Sharmin

Good Luck  I will pray that you both will be fine

Zaini,

I am not sure but I was told by the thalassemia center (Sick Kids) in Toronto that transfusions are completely stopped and hemoglobin is allowed to drop significantly before hydrea is started.  I believe that they also said that transfusions are not given with hydrea because transfusions suppress the marrow. 

I could be wrong.  Andy, do you know more about this?

Sharmin

Thats what i have heard about hydrea.

Thanks Cherianne.

Zaini.

Hi Zaini and Sharmin
The use of hydrea on transfusing majors has been discussed before. It`s usually practised in countries where availability of safe blood is a issue. The use of hydrea is known to increase the tx intervals. Quite sometime back one of our members opkaram had mentioned that the use of hydrea had increased his daughters tx intervals from 30 days to 45days. I remember this clearly as I had asked my hema about it then, and he just declined it saying it helps sicklers not thals. When I learnt it was a chemo drug I lost interest in asking further.

take care
maha

Hi Zaini, Sharmin and Maha
I don't understand what I am reading re hydrea from you all.
I take one tablet daily and it has helped me last an extra week to 10 days longer.
My hb was never allowed to drop for me to get started and my transfusions have not been stopped or prolonged. Maybe each country is different with their guidelines.
We don't have any more of a safe blood issue as the next country and yet it is used on those of us that it helps.
It doesn't help everyone as the drug has to be adjusted accordling to the individual.
Some people only have a weekly dose of one tablet and receive the same results as someone like me on a daily dose and then there are the people who won't get any benefits regardless.
I do not have sickle cell anaemia, I am a Beta Thal Major who swears that it helps me. My hb has been in the 90's to 100 after 6 weeks so I am pretty lucky. The only time it is lower is when I have been sick which is understandable.
I hope that my small input may answer some of your questions or give you some other points to discuss with your haema. 

Maha,

Yes thats the prob that it is a chemo drug.

Cherianne,

Wow,i never knew you were taking hydrea,and honestly i never knew if transfusing majors take it,I would like to talk about it with her hemo,the only concern again is adding another drug,and to be precise a chemo drug.

Andy,

I'd love to know what you think about it?

Zaini.

WOW Cheriean , you shared something reallly helping and informative .. i asked a few times to my doc abt Hydrea and she said it is not for Thal Majors ,it  help's only intermedias .... i will again talk to her abt it ... Thanx alot Cherry

Umair

Hi cherieann
I didn`t know you are on hydroxyurea as well. 6 weeks interval is great. I remember a trial run in Algeria on thal majors with significant improvement amongst all. If the same trial had been run in the USA or UK it would have probably been followed everywhere.

maha

Wow! I thought I had posted before that I take hydrea.
Maha, nice friend, Zaini
It wasn't until you said, that I found out it was a chemo drug. The knowledge hasn't changed my mind as the results are worth it.
Although I am clinically diagnosed Major now,  I was first diagnosed as being the high side of  intermedia before they changed it. The reasoning was that my health had deteriorated to class as a Major.
Apparently I can produce 1% of blood which is why we decided to try hydrea.
Zaini I can understand more pills and lest of all a chemo drug, but for me it was the right choice for me. With my ferritin so high, I wanted to prolong the time between each transfusions to help get my ferritin down by chelation without the constant transfusions. It is an up hill battle that sometimes doesn't work and my ferritin stays still or climbs but as of oct last year my ferritin hit the 5000 then Jan this year 4000, Mar 3800 and this month 3200.
Its still high but  its come down.