hydroxurea......

doctors did some test and the xmnr polymer test showed results of - and + both, so they said we can try hydroxurea and see results.. well some side effect they told me that  short tearm- complexsion may get dark..   for long term ... they are giving to some of patients for 7-9 years  and to them no side effects seen yet otherwise if go through manuals then there are some serious side effects which might occur..

y dosnt anything go smoothly ...


micky

doctors did some test and the xmnr polymer test showed results of - and + both, so they said we can try hydroxurea and see results.. well some side effect they told me that  short tearm- complexsion may get dark..   for long term ... they are giving to some of patients for 7-9 years  and to them no side effects seen yet otherwise if go through manuals then there are some serious side effects which might occur..

y dosnt anything go smoothly ...


micky

1st blood tranfusion was done on 15-3  at hb level 5.2 ,,   today we did cbc count again 1-4 about(17 days).  hb is 9.0  and platelets are double 650 more than normal , creatnine  is   less 0.4!!!!   rest everything  perfect.

regs
micky

Micky,

Your son is really cute,Give your sweet little boy so many kisses from me.

ZAINI.

Aww.... He's soooo cute

Please take good care of him. Looking at the glow in his eyes, he would do so well if you keep his Hb. high at all times.

Best wishes.

What a beautiful child Mickey! 
He looks well, you've taken good care of him. 

Sharmin

thanks every1.


 

my son had little fever and hb went down to 7.8  now, but now doctor said that we cant do the blood transfuion and he is on hydrea... and have to wait until goes below 7 or is stable  as hydrea will show effect only hb is below 8.

lets see i hope good results now with hydrea.

  Micky,

with hydrea.

ZAINI.

Best of luck Mickey!

its almost time to get 1st CBC counts to check if platlets and thc  is fine as these are things that get effect with hydera as  side effects. hope to get good results.

1ST CBC AFTER HYDREA
HB-8.3, TLC-13.4, PLATLETS-407,  rest all normal
test were ok for  hb increased from 7.8 to 8.3,  doctor said its 14 days only cant decide right now will see next cbc again. platlets before 605 had decreased to 407, though now are normal as before it was excess.

so i had not much knowledge now but i hope something good in future.

micky

The early increase in Hb is a good sign. Please also use any other fetal hemoglobin inducers such as wheatgrass along with the hydroxyurea. They will complement each other and work to increase the Hb. An Hb of 8 is quite a relief, Micky. One time supposed increases in platelets are no concern as it is one of the most misread of the blood count tests in thalassemics because the misshapen red cells are often counted as platelets.

Things are looking good for our little cutie for now - we wish you continued success and improvement Mickey:)

Sharmin

andy getting some reply from you specially in our side really boost my confidence atleast.

thanks

Micky,

I continue to believe that your son has a good chance to be a non-transfusion dependent intermedia. There may be occasional transfusions but his ability to maintain an Hb of over 7 seems to be well established. His overall health and bone development will also be factors to be weighed but he definitely seems a good candidate for HbF induction. I still feel Dr Mathur's treatment had some minor positive effect and one of the main values of that is showing that your son's HbF can be raised. After learning more about the supplement called resveratrol, I would recommend it if you can find it there. It is an extract of red grapes and has been shown to raise Hb levels. These different Hb inducers work together and this and wheatgrass can both be safely taken with other meds.

What do you observe about the way he looks, his energy level and his overall health since starting on hydroxy?