Slow rate transfusion and warm antibody

I pray your son gets well soon

Sharni,

                               

I hope everything goes back to normal,i know and i can feel what you must be feeling,it even scares me that where all this is leading,i am a mom too,i can feel your helplessness,but i believe prayers can change everything and maani will always be in my prayers.

Be strong,love you.

ZAINI.

Thank you kindly Sajid and Zaini - your prayers mean the world to us. 
We will have another transfusion later in the week to help us get to a good level. 
The doctor says that things are not as bad as they seem to me because I have a very healthy boy
(thank god) and that this is the first time he is really hitting him with a big dose of steroid - because the tiny dose
has been holding him in the past.  He is hoping that this big hit may help bring things under control again.  He is also looking into other alternatives and is open to whatever happens in Oakland. 

Thank you so much my friends.  Communication with all of you gets me through the most difficult of days.  I hope you are all well. 

Love,

Sharmin

Our doctor mentioned another method of treatment - to deal with the antibody - I forgot the name - I'll let you all know about it after our next transfusion on Thursday. 

Apparently, it is helpful for many autoimmune problems. 

Sharmin, always thinking of you and praying for our little soldier.  I hope everything will be just right and it would be just a matter of time.  You are doing the best for your son

manal

Sharmin,
I pray that your son becomes  well soon.
Sah.
 

Thank you Manal and Sah  ,
We have another blood test tomorrow and a tx the next day.  I hope this one lasts longer.

Thank god none of this is affecting him right now - he's in the shower singing opera 

I love you all - I'll let you know how things go over the next few weeks.  The doctor is expecting to gain some control over the situation with the new dose of pred. 

I wish you all well:)   

Transfusion again tomorrow guys.
I'll let you all know how it goes. 

He seems well - I hope transfusions become less frequent soon. 

Take care everyone - god bless,

Shamin

Best wishes


Praying for everyone.

My prayers are with you Sharmin.
Sah

Thank you all - the day went well.  We are hopeful that things will improve soon.

I wish you all good health.

Love,
Sharmin

Thank you Sah - best wishes to your family 

Andy,

My son will be going in for a blood test tomorrow morning - we pray for the best.  He was transfused 1 1/2 weeks ago - his post hg was 124 and he has been on 50mg/day of prednisone since.  I can't really tell if he is low right now.  I hope his hg held up because he is on such a big dose of steriod, I have been very careful about his diet - but his cheeks have gotten quite big - it's quite sad to look at him because he looks so different - and people are commenting.  He seems to be handling it well - luckily things return to normal once the dose is tapered down.  The most important thing is that this antibody is under control. 

The doctor also mentioned retuximab - do you know anything about this procedure.  I understand that the results are not always permanent but they give the body a break from hemolysis and steroids for a while by stopping antibody production. 

Thank you everyone for your prayers - I wish you all the best:)

Sharmin

Wishing you all the best

Hi Sharmin,

Rituximab (brand name Rituxan) is used to eradicate the B lymphocytes. This drug is often used in cancer patients after chemotherapy has been finished. It is also used in lupus and rheumatoid and other autoimmune disorders, as a way to prevent the actions of the B cells. I found an article about its use with leukemia patients who have Autoimmune hemolytic anemia (AIHA). When looking at this article, please ignore what are the effects of leukemia because this has no relevance to your son's case. What does have relevance is that use of this drug did work to counter AIHA.

http://www.nature.com/leu/journal/v16/n10/full/2402676a.html

Our results indicate that a rituximab-based combination regimen (RCD) is highly effective in treating steroid refractory AIHA of CLL (chronic lymphocytic leukemia)....This work was made possible by research grant support to Dr Kanti R Rai from The Chemotherapy Foundation, The Edward Brodsky Fund and The Joel Finkelstein Cancer Foundation.

Basically, what was found was that this did was suppress the AIHA for a median period of 13 months in these patients. This may be an option for your son, but I would suggest that you do not try this until you have also discussed it with Dr Vichinsky. Also, my part time worker has Rituxan treatments 6 months after his chemo for lymphoma and I will ask about side effects etc. He had the treatments on Fridays and never had any problem with working his days the following Wednesdays and Thursdays.

I hope there is some improvement in your son's results this time. 50 mg is a high dose and we don't want to see him on that dose for long.