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  #1  
Old Sat Mar 27, 2010, 06:45 PM
c ramirez c ramirez is offline
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Join Date: Mar 2010
Location: Woodland, CA
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Should we do the bmt?

My 2 year old was diagnosed with sAA in Decmeber. She had ATG in January and has been on cyclosporine and prednisone ever since. After the ATG we found out that our 5 year old is a match and the transplant doctor wants to go ahead. According to him it's a no brainer because they're young. I'm scared of putting her through the chemo and of all that can go wrong. Her platelets have gone up to about 47,000, but that's just because of the meds. She's also on norvasc because of high blood pressure.
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  #2  
Old Sun Mar 28, 2010, 05:22 PM
Neil Cuadra Neil Cuadra is offline
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It's perfectly understandable that you don't want to put either of your children through the transplant process, if it can be avoided. Your daughter's doctor has probably told you that it can take many months to see if her bone marrow function is restored by the ATG/cyclosporine/prednisone treatment. Tapering these drugs must be done very slowly, so the extent of her recovery may not be known for quite a while. Then you will be faced with the uncertainty about whether the improvements are permanent. Her SAA could eventually return.

The flipside is that a transplant, while unpleasant, can cure SAA. The good news is that ATG and matched sibling transplants both have excellent track records for youngsters so the odds are in your daughter's favor.

By the way, cyclosporine is probably the cause of her high blood pressure, assuming she had no previous medical issues.

To help you make this difficult decision, I suggest getting a second opinion at a treatment center that has expertise with SAA, such as the Helen Diller Family Comprehensive Cancer Center at UCSF or the Stanford Medical Center.
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Old Sun Mar 28, 2010, 10:35 PM
Hopeful Hopeful is offline
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Is your daughter tapering down on the Prednisone? Prednisone is usually given for 2 weeks post-ATG (to fight serum sickness) and then tapered within a month or so. You definitely don't want her to be on this drug longer than necessary.

It is my understanding that a transplant is regarded as the first course of treatment for SAA for people that are under 20 with a matched sibling donor, as the probability of survival is around 85%. Younger people also have less risk of GVHD.
http://www.marrow.org/PATIENT/Undrst...mes/index.html

If possible, I would consult with multiple centers as to their best pretransplant regimen, if you decide to go that route.

Where is your daughter being treated? I also am in Northern California.
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #4  
Old Tue Mar 30, 2010, 01:53 PM
c ramirez c ramirez is offline
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Join Date: Mar 2010
Location: Woodland, CA
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Peds BMT

She's being treated at UC Davis Med Center which I'm happy about. Her prednisone has gone from 30 mg every day to 12 1/2 every other day. The transplant doctor made it sound like toxicity from the meds can reduce the success rate of transplants. My husband and I are planning on asking the doctor to lower her meds to see how she does on her own and if it crashes to go with the transplant. I don't want to worry about it reoccuring.
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