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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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  #1  
Old Sat Nov 19, 2016, 11:26 AM
dfantle dfantle is offline
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When to stop phlebotomies?

Hi, wondering at what ferritin level most of you have stopped your phlebotomies for iron overload caused by transfusions?
My level is finally down to 700ng/ml. My provider is suggesting we stop when this level reaches 500. (I've been having the phlebotomies monthly for 3 years)

Thank you
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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Old Sun Nov 20, 2016, 01:59 PM
Marlene Marlene is offline
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Hopefully, John will be stopping with his next appointment. We would like to see FE at 200 but we found most docs are ok with it being in the 500 -700 range. His local hematologist wants it no higher than the high end of normal. He reached that goal about two years ago and then at his next annual appointment, it was up again so he wrote ordesr for every other month phlebotomies for one year. He just did his last one and we'll find out in Jan/Feb what his FE is. He's been dealing with iron overload since 2002. It's been a real challenge for him.

We are more comfortable with his FE being at least in the mid normal range. John's HBG has never fully recovered so we have to rely on the doc to issue orders otherwise the blood donor center won't take his blood.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Sun Nov 20, 2016, 04:16 PM
dfantle dfantle is offline
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Thank you Marlene.
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #4  
Old Mon Jan 9, 2017, 11:14 AM
Marlene Marlene is offline
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Finally done.....

After three Phlebotomies in 2016, John's FE is finally down within the mid-range of normal, 233. Will check it again next year.

His numbers were the best ever too. His platelets reached "normal" for the first time in 15+ years. I looked back at some of his blood work prior to getting SAA and his platelets were either just below normal or at low normal. His white count was up too. HGB remains steady. I've update the signature with the latest counts.

He did increase his intake of Vitamin K2 (15 mg of Thorne V K2) this summer so I wonder if that, coupled with the reduction of iron, has in some way helped move those counts.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.

Last edited by Marlene : Mon Jan 9, 2017 at 02:50 PM.
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  #5  
Old Mon Jan 9, 2017, 02:34 PM
Neil Cuadra Neil Cuadra is offline
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Marlene,

Whatever you and John are doing, keep doing it. That's a great report to hear on his iron, and a good way to start 2017.
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  #6  
Old Mon Jan 9, 2017, 02:51 PM
Marlene Marlene is offline
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Thanks Neil. It is a good way to start the year!
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #7  
Old Mon Jan 9, 2017, 06:50 PM
Sally C Sally C is offline
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Marlene,
That is wonderful news for John and you. And thank you for your always educational posts to Marrowforums. You are a storehouse of knowledge that I'm sure has helped many.
Best wishes for John's continuing good health - and yours as well!
Sally
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