Unrelated Bone Marrow Transplant.

Dear All

It's almost 2 years( to be exact 12 Apr 2008) since my daughter's Unrelated Bone Marrow Transplant. Latest Hb is 14, WBC 8000 and Platelet 130000. GVHD is minimal now and by March 2008, she should off with the last anti GVHD drug, Cellcept. Her ferritin is >2000 now, the doctor recommended us to use desferal 5 times weekly together with L1. We have opt for the non subsidized Exjade in place of desferal and L1. We hope her ferritin will drop within the next few months. Blood letting of 200ml every 2 weeks is planned by the doctor from 12 April 2008 onwards. She will be re-vaccinate as well.

Thank you.

Hi Omega!

Thanks for the update!

I'm so happy for you It's good to see that she is doing so well. These are pretty good figures! Don't worry about the S.F as it will go down with proper chelation and Phlebotomy.

Wishing you all the best for the future!

i am really soooooooooo happy for you and your family, i know how hard it had been those two years. Now it is time to enjoy

Take care

Manal

Thanks for the update. Nice Going.

Congrats 

ZAINI.

Congrats.

Lots of Love for your daughter.

Dimple.

 CONGRATOLATION DEAR   
                       
                       KHALIFA
                STATE OF KUWAIT
         ONE FOR ALL AND ALL FOR ONE

Dear

My daughter has been using Exjade since 27 Nov 2007 to reduce the ferritin level of around 2480 ug/L at that time. Today we just received the latest ferritin test result from the lab, it's 1696. Exjade has reduce her ferritin level from 2480 to 1696 ug/L in 6 weels' time. I am very impressed with Exjade. Her ALT has also dropped to 185 from the earlier 262.

Thank you.

Best Regards

Omega.

Omega,

As always it is good news to hear that your daughter continues to improve.    What is her daily dose of Exjade?

Thank you Andy.

Her weight is around 26.5kg. She is taking one 500mg tablet once a day. We are following the 20mg/kg as recommended by the Doctor.

Thank you.

Hi Omega,

Good to hear that your daughter is doing nice!

Best wishes for the future!

Thank you Sajid.

Nice Going Omega,

My daughter is hopeful to start the Exjade in January 2008, she is 15KG and her last known ferritin was 2400.

I am working things out with the insurance company and hopeful to win the case. Meanwhile, if you can tell any side effects your daughter had or any advise would be great.

Thanks

Dear Canadian Family

We did not encounter any side effect from Exjade but her ALT increased initially and went down after that. The doctor was not sure whether the increase in her ALT was caused by Exjade or other Anti GVHD drug.

Thank you.

Best Regards,

Omega

Hi Everyone,

My daughter's latest ferritin result was 1724 ug/L on 12-2-2008 , compared to 1696 ug/L on 3-1-2008. It did not go down as per our expectation.  What could be the possible reasons? Initiually we are hoping Exjade would bring her ferritin down in 2 - 3 months but it seems that it would take a longer time now. 

Her full blood count yerterday was ok, hb 13.3 (14.2 about a month ago), WBC 8300 (8100) and Platelet 131000 (142000). She is now taking Cellcept, the anti GVHD drug at the minimal level.

Thank you.