Discussion Forums > Thalassemia Major

Update

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Sharmin:
Thanks Andy.  We have gotten through the IVIG and 2 ritux treatments.  I am a little nervous and excited about beginning Exjade.  I hope that everything goes well, and if it does I look forward to eventually not having desferal anymore.  What a lifestyle change that would be!   

We are now preparing for another trip to Oakland on Tuesday.  Once again we are creating our list of questions.  Is there anything else that may be useful for us to discuss during our meeting for our son?  Is there anything I can ask on your behalf which may be helpful to our thal friends? 


Sharmin

Andy Battaglia:
Sharmin,

I have many questions but this one keeps popping up. What is considered to be the minimum the Hb level that should be maintained before transfusion is required in thal majors? This used to be in the 8-9 range, but recent opinion seems to lean towards the 10-10.5 range before transfusion. Ask Dr Vichinksy if he concurs with this protocol.

§ãJ¡Ð ساجد:

--- Quote from: sharmin on July 27, 2008, 06:24:15 AM ---Today is the last day that we give him desferal until after he begins Exjade on Wednesday.

--- End quote ---

:stars :congrats :yahoo

I'm so happy for you! :happyyes

No more daily needles will surely have a positive impact on his mood

:clap

Sharmin:
Andy,
I will ask Dr. Vichinsky about ideal pre tx levels. 

Sajid,
For the time being we will be on exjade/desferal combination treatment, we hope that in the future he can use just the exjade - perhaps later in the year :)   But hey, if that happens in the near future we will be free from needles! 


If anyone thinks of anything else later today I will add it to my list,

Sharmin   :hugfriend

Sharmin:
Andy,

The goal is to have pretx hg levels between 9 and 10.  They thought that below 9 was too low and can interfere with growth and cause the spleen and bone marrow to expand. 

We did receive a lot of info - if there are any other questions you are welcome to ask while it is all fresh in my mind  :biggrin

Sharmin

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