Home         Forums  

Go Back   Marrowforums > Treatments > Transfusions and Iron Overload
Register FAQ Search Today's Posts Mark Forums Read

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

Reply
 
Thread Tools Search this Thread
  #1  
Old Sat Nov 19, 2016, 11:26 AM
dfantle dfantle is offline
Member
 
Join Date: Jan 2012
Location: bellevue, wa
Posts: 150
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
__________________
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
Reply With Quote
  #2  
Old Sun Nov 20, 2016, 01:59 PM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
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.
__________________
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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
Reply With Quote
  #3  
Old Sun Nov 20, 2016, 04:16 PM
dfantle dfantle is offline
Member
 
Join Date: Jan 2012
Location: bellevue, wa
Posts: 150
Thank you Marlene.
__________________
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
Reply With Quote
  #4  
Old Mon Jan 9, 2017, 11:14 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
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.
__________________
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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.

Last edited by Marlene : Mon Jan 9, 2017 at 02:50 PM.
Reply With Quote
  #5  
Old Mon Jan 9, 2017, 02:34 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
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.
Reply With Quote
  #6  
Old Mon Jan 9, 2017, 02:51 PM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Thanks Neil. It is a good way to start the year!
__________________
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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
Reply With Quote
  #7  
Old Mon Jan 9, 2017, 06:50 PM
Sally C Sally C is offline
Member
 
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 467
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
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Do you ever stop seeing the hematologist? Other questions? Ellen McDonough AA 3 Thu Jul 3, 2014 09:40 AM
Anyone Had Disability Stop? Lori Patrick Insurance, Finances, Disability, Veterans Benefits 1 Thu Mar 14, 2013 08:07 AM
When to stop Vidaza? Paolo D. Drugs and Drug Treatments 5 Sun Jun 26, 2011 02:15 AM
Doctor wants to stop Vidaza treatment Judy W Drugs and Drug Treatments 2 Sat Aug 14, 2010 05:35 PM
Want to Stop Treatments katherineann59 MDS 1 Fri Nov 21, 2008 05:35 AM


All times are GMT -4. The time now is 06:02 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org