Rituximab tomorrow

I am waiting to hear back from Oakland about his exjade dose.  His color looks darker, I am assuming that his iron level is higher again.  We are going to chelate aggressively to get it back down quickly.  I think we may do desferal 7X a week for a while.  Andy, what are your thoughts?

Sharmin

Sharmin,

I think some extra chelation right now would be helpful. It's best to stay on top of it so you're not always fighting an uphill battle. With the added transfusion lately, he does need more chelation. I hope they can raise the Exjade dose. I think that would help a lot.

Sharmin, how about IV desferal during transfusion,  wouldn't this help??

manal

I don't think the short period that it takes for a transfusion would be long enough to do much good with IV desferal. It's main use is for longer periods of several days at a time or more, because this will make an impact. An extra night of subcutaneous desferal would have a bigger effect on ferritin than a few hours of IV.

For the next few weeks I will give him desferal 6 or 7 days a week - in the meantime I hope to hear back about the exjade dosage - there is room to increase it and I would like for him to be on the full dose. 

Thanks Manal & Andy,

Sharmin

Sharmin,

I hope you'll get the reply soon,it would be better to increase the dose of exjade rather then desferal.

Zaini.

Hi Sharmin,

it would be better to increase the dose of exjade rather then desferal.

if he is not having any side-effect to Exjade the  wat Zaini has said , increasing dose of Exjade is better than Desferal as Little-A is in growing age, ( i think, id ont to have complete in-detail explaination bcoze you know much more than me ,so only want to shed light on another aspect of it )  GOOD LUCK  ...

Best Regards
Take care
Umair

Thanks Zaini & Umair,

I agree, excessive desferal can effect lil A's growth so it's better to increase the exjade.

Sharmin

Thanks Andy

Sharmin, hope you will soon hear from them

manal

Sharmin,
i hope that his result will be finer than it were last time ... hope to hear some good reports of Lil-A realy soon ..

Best Regards
Take Care
Umair

Hey Sharmin didi!



m praying for lil A!

best,
Pareeshay.

Thanks Manal, Umair and Pareeshay 

Sharmin

Hello Little A.

GOOD LUCK!!!!!!!!!!!!!!!!! I am sure you can do it as well. I have just heard that my ferritin dropped in 1.5 months from 1500 to 1012. We can beat the iron! (I have had more transfusions during that time, because my hgb is skiiing a little to fast down the hill)

I wrote this to my friends this morning:

Don't let the iron win and manage your life, but fight the fight, be in control and rule over the iron!

I think that my non patients friend believe that I am crazy now, but that's their problem. Maybe some day they will get the picture.

[I used a signature of one of our members too. I wrote it like this: I hope that I soon will understand that deironing is not a burden, but a lifestyle  It will take still many years before I will be able to say "PK def. is not a burden, but a lifestyle". ] Whose signature is this?

Tell your mommy and daddy to take you out for dinner when you are getting the control over the iron. 

 

Dore
p.s. Keep scoring goals for your team! I don't do any sport, but everyone always ask me to bike much slower.  That's difficult for me 

[I used a signature of one of our members too. I wrote it like this: I hope that I soon will understand that deironing is not a burden, but a lifestyle  It will take still many years before I will be able to say "PK def. is not a burden, but a lifestyle". ] Whose signature is this?

Its Cherianne's signature .

Zaini.

Hi Sharmin  Sis , where are you ?? , any updates ?? .. please keep us updated ... i hope , you have got that Selenium related PM ... hope to hear from you very soon ..

Best Regards for Lil-A
Take Care
Umair