Discussion Forums > Thalassemia Major

Update and questions

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Sharmin:
My son's summer has been busy with the rituximab, ivig and transfusions.  His rituximab was completed on aug 7th.  He received a single unit tx  (approx 300cc) on aug 8 (pre tx hg 91).  His pretx hg today was 82.  I know that antibodies have a half life of several weeks - maybe a couple months - but is this drop too much at this stage of his treatment Andy? 

He had an ivig today and is having a tx tomorrow, he was in 3 days last week.  Frankly, he just wants to play as his summer holidays are coming to an end.  I am so worried about him getting depressed if we have to have so many frequent visits.  Does anyone have any ideas on how to prevent this?  I am emotionally exhausted myself, but I am doing everything I can for my son. 

Also, there are different opinions on whether or not to continue the ivig treatments - what do you think Andy? 

Thank you so much everyone for your support,

Sharmin

Andy Battaglia:
Hi Sharmin,

In a study of young patients using rituximab which followed 15 patients ( http://bloodjournal.hematologylibrary.org/cgi/reprint/101/10/3857 ) the response time to rituximab was quite varied, ranging from as little as 5 days to a high of 72 days. If there is a recurrence, the rituximab is often repeated. Treatment with IVIG also has a greatly varied response and is directly related to how long the autoantibody problem has existed in the patient. The longer the problem has existed prior to commencing treatment, the longer before the effect of IVIG is seen.

It's too early to determine the effects of the treatment, and because of the long interval between the appearance of the autoantibody and the beginning of treatment with IVIG, it may have to be continued for awhile to see if it will have an effect. Your doctor should have some time frame in mind for determining what is working and also some possible adjustments to the therapy if no results are seen.

Your doctors should be able to give you some idea about how long this may take to see results. Hopefully this next transfusion will keep his Hb up a little longer. Both traveling and the summer heat can lower Hb so this may be something that should be factored into his current Hb level. I'm happy to hear he wants to spend his time playing.

Sharmin:
Hi Andy,

Our doctor has told us that with the Rituximab - although new antibody production should be suppressed - the old antibodies can survive for up to 5 months. Blood tests show that antibodies are still present, but both Oakland and our doctor had told us that they would be around for a while.   Of course during this time they are expected to decrease in numbers and cause less trouble.  It is after this time that full effects of the rituximab are expected to be seen.  We hope that his transfusions begin lasting longer and longer....

The ivig in our case is being used to compensate for the loss of immunity resulting from rituximab - to prevent infections.  Different clinics have different opinions regarding the need for the ivig because they are not sure whether it is necessary and whether the immuity is actually suppressed that much with rituximab.     A second benefit ivig can have is to decrease hemolysis by the antibodies that remain.  We hope this effect will help him until the antibodies dissappear.  I am sure that the travelling and summer heat have contributed to his decrease in hg.  We are still on a low does of prednisone for a little while 10/mg alternate days.  We hope we can get off of this soon. 

His ferritin is 2138 - we hope that this number begins to decrease soon.  Although not a perfect measure of liver iron, it will give us a general idea of how things are working.  We have been on desferal/exjade combination therapy for 3 weeks now.

He is wanting to play a lot more.  I think he is dissappointed with how much of his summer has been spent in the hospital this year. 

Our doctor did put things in perspective for us though - while I was telling him that the reaction with the ivig was 'the sickest our son has ever been' - he smiled at us and said ' yes, i've known him all of his life and that IS the sickest he has ever been - in fact i don't ever remember him being sick before that at all" .  I guess I should be thankful that for a child with a serious disorder he has never really been very sick before.  It is also a reminder that with proper management a person with thalassemia can be very healthy. 

I hope that this treatment works the way we hope for it to.  I will keep you posted with our numbers in the future - hg, ferr etc. 

Thanks again Andy:) 

Sharmin 

Manal:
You are in my prayers :hugfriend :hugfriend

manal

§ãJ¡Ð ساجد:
Be strong and positive Sharmin. We know you are doing the best anyone can do.

It's good to hear that he is active even with all the medical treatment around him.

I hope he gets completely well soon. :getwell

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