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Old Fri Apr 20, 2012, 10:10 AM
jtst jtst is offline
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AA not immune, perhaps caused by Iodine131 treatment... need some guidance

Hi,
my mothers has been diagnosed of severe aplastic bone marrow. She was diagnosed of Chronic Linfocitic Leukemia a year ago, but she was stable and doctors said her levels were pretty good. After that they discovered she had a thyroid cancer and she went through surgery to take it off (November 2011).
Everything was ok. She was recovering from the surgery.
Following the protocol for this kind of thyroid cancers, she was admitted in the hospital during 5 days to receive treatment with radioactive Iodine 131. This I131 is trapped by thyroid cells wherever they are in the body.
After that treatment, things started to go wrong. My mother started to fell weaker, she always feel cold, in bed she even covered her feet with an additional blanket... after two weeks she started to bleed by her nose.. after three weeks she got bruises easily just if she dared to scratch herself.. finally she went to emergency, they made blood tests and was admitted in the hospital.
Although the doctors say that the radiation dose they applied is not enough to provoque a Bone Marrow Aplasia, it seems that that was the trigger.
But, knowing this seems bad news according to doctors, because it seems that this sickness is normally caused by autoimmune mechanisms for which more treatments are thought..
So it seems we have a rare case, within another rare case. BM aplasia is rare and the I131 collateral effect is also not described before...
We're lost. Is anyone there in a similar situation? Which are the treatments available when the aplasia is not autoimmune?
Whatever help or idea would be very appreciated.
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Salva, son of Mari age 66; diagnosed Several BMFailure April 2012;not known exact reason but suspect previous treatment with Iodine 131 after Thyroid carcinoma surgery;treatment hasn't been decided yet
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Old Sun Apr 29, 2012, 07:22 PM
Lisa V Lisa V is offline
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Salva, have your mother's doctors said with certainty that there is no autoimmune mechanism at work? I am a bit confused by this. I am not a medical expert, so perhaps someone can explain this to me, but my understanding of autoimmune responses doesn't rule out there being an outside trigger. If the radioactive iodine caused some cell mutation or aplasia, the immune system would then attack those mutated cells as if they were foreign bodies. It's all part of the same process, at least that is my understanding. If that is the case, then immune suppressant treatment may help to stop the attack, although it won't get rid of the abnormal cells. She might have to remain on cyclosporine forever, which can cause other problems. Maybe that is what they are concerned about.

The alternative is to have a bone marrow transplant, which would presumably have the same chance of success whether her condition is autoimmune or not. Does she have a suitable marrow donor? And do her doctors think she is healthy enough to undergo a transplant?

Good luck to both of you!
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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