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

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  #1  
Old Mon Oct 10, 2011, 07:56 AM
tserdogan tserdogan is offline
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High Ferritin Levels

Hi,

My ferritin level is now 6500.i got so many blood approximately 100 package.
29 months from transplant.Now phlebetomy starts.İ gave four packet blood. But still counts are very high.How many years needed to decrease this levels and decreasing the risks?
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  #2  
Old Mon Oct 10, 2011, 09:01 AM
Neil Cuadra Neil Cuadra is offline
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A typical phlebotomy treatment reduces the amount of iron in the body by about 250 milligrams. It's a gradual process to reduce your iron to a safe level, so with very high ferritin it's likely to take many months at least. How much blood they can take and how frequently depends on your having a high enough hemoglobin level.

I'm surprised they didn't start phlebotomy sooner in your case. Let's hope it does the job so you don't have to take chelation drugs.
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  #3  
Old Mon Oct 10, 2011, 11:18 AM
Marlene Marlene is offline
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It can take quite a while to reduce your iron. Like Neil stated, volume and frequency makes a difference. Normally, those with iron overload (with no bone marrow disorders) will sometimes have blood removed weekly. That's too aggressive for most here.

Your frequency/volume can be determined on how quickly you make up the difference. John found that he could not do more than 250 ml every other month. When he did more, it was too stressful for his bone marrow. Needless to say, it's taking him a long time to get his FE to normal level.

From what I remember, each unit of packed red cells contains about 250 mg of iron. And based on Neil's comment, each 500 ml of blood removed, removes about 250 ml of iron. So based on that, it can take awhile to get the iron down after 100 transfusions.
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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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  #4  
Old Mon Oct 10, 2011, 12:00 PM
tserdogan tserdogan is offline
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Thanks for your replies.
i planned once a month,and this means is 2 years.i hope no side effects of iron overload affect me at this period.
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  #5  
Old Tue Oct 11, 2011, 02:03 PM
Mary4Mike Mary4Mike is offline
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Wink

I had to reply to this also. Mike's ferritin was over 6000 at 5 months post transplant. His HGB was 17. They began phlebotomy at 6 months post transplant. They said they usually begin phlebotomy at one year out, but because of his HGB, they began early. He has never had a problem/side effect from the procedure. They always give a saline drip for half hour after the blood draw. They have been taking 250 ml on a monthly basis, since. This has been 19 months now and his ferritin yesterday was a little over 1500. He has maybe missed a couple of months because of vacations, but as you can see, it takes a while. Be patient with the process.

How are your other counts, otherwise? Mike had issues with elevated liver enzymes. A liver biopsy showed excess iron stores. After a few months doing phlebotomy, the counts normalized. I hope that you are feeling well and enjoying this new gift of life! We certainly are giving thanks for our blessing.
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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  #6  
Old Wed Oct 12, 2011, 01:32 PM
tserdogan tserdogan is offline
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Hi Mary4mike,
I have the same elevating liver counts.Because of this i use prednol everyday.
Other counts are nearly normal.
Did you count the phlebetomy number to decrease 1500.
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  #7  
Old Fri Oct 14, 2011, 08:27 PM
Mary4Mike Mary4Mike is offline
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I am not sure, but I would guess 15 or 16. I will have my husband check it out - not sure if he keeps track of that. I will be anxious to see if your liver #'s stabalize after maybe 5 or 6 phlebotomies. Do you have any pain or discomfort in the area of the liver? Mike did. He never has taken steroids through this whole process, though. What is your HGB now? And platelets? They are the last to come back after transplant. Glad to hear that you are doing well.
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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  #8  
Old Sat Oct 15, 2011, 11:06 AM
tserdogan tserdogan is offline
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Last Counts(last week score)
My Plt is 159
Hemo is 13.8
Alt-ast:120 nearly
i had no pain when they were high.i had only nausea when they were up.
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