MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Red Cell transfusions/Ferritan levels

Home Demo forums Patient Message Board Red Cell transfusions/Ferritan levels

Viewing 12 posts - 1 through 12 (of 12 total)
  • Author
    Posts
  • #20768
    lynne
    Participant

    I will be getting my 4th transfusion of red cells tomorrow in a 6-month period…my doctor gives red cells when hemoglobin gets to 9………….I have MDS-RARS,and ws diagnoed 7 years ago. No white cells or platelet issues. What has anyone been told about how many transfusions you can have before iron overload sets in,and what is the point of concern for ferritan levels?

    #20769
    frank
    Participant

    probably 10 for me, 2 units at each time.

    #20770
    billboy
    Participant

    Hi Lynne,

    Different doctors use different thresholds before initiating iron overload treatment. Many seem to use a serum ferritin level(SF) of 1000. Naturally everyone’s a unique patient; in my case my doctor started me on Exjade, an iron chelator (remover) after I had received 54 units of red blood cells. At that time my SF was about 1350. The makers of Exjade indicate that iron overload becomes a concern after about 40 units are transfused. So unless your SF was very high initially, you are not likely to need treastment for some time. The concern is that iron overload or toxicity is very harmful over time. What happens is that iron deposits in your major organs ( heart, liver, pancreas,endrocine glands, etc) and then predisposes one to heart attacks and diabetes to name a couple of adverse results. Just Google “iron overload” and you’ll find a wealth of information on the subject.

    #20771
    gj
    Member

    Lynne

    Frank is right, once you get into the 9 or 10 transfusion of 2 units the iron begins to rise. They can do a blood test as part of a regular CBC. If I remember the range begins at about 35-250 units of serum ferratin. I recently started on Exjade because my SF count was 1313, well above the acceptable level.
    If you’re concerned ask you doctor or one of the nurses and they should be able to discuss your concerns.
    Wishing you the best.
    greg

    #20772
    marlene
    Member

    Per the latest update from the makers of Exjade, therapy should not begin until your serum ferritin is at 1000.

    #20773
    txplumber
    Member

    I have had multiple transfusion startins since april of this year. I have rec’d a total of 26 pints. today is the first time they tested my ferritan level

    #20774
    celebrations
    Participant

    Hi Lynne,
    our cases are quite comparable, although I was only diagnosed in the beginning of 2006.
    In the last 6 months though I have been getting 5 rbc-transfusions (always two units and always when my HGB has lingered between 8-8,7). My ferritin level is already 975.
    My doctors keep telling me, that I will be getting chelated around 20 transfusions.
    On the other hand they had told me that a chelation would be adviseable with a ferritin level over 1000.
    So I am puzzled about the contradiction, can you help. I will ask, when I have my next apt.
    Bergit

    #20775
    txplumber
    Member

    what is a chelation?

    #20776
    celebrations
    Participant

    to get rid of iron overload!
    You can say “to chelate”, can’t you use it as a noun “chelation”?
    Sorry, I am from Germany.
    Bergit

    #20777
    billboy
    Participant

    Chelation is the the chemical removal of metallic ions from ones body, to answer a couple of questions above this post. There is a wide variation on when doctors initiate the treatment. See slide near the end of the following link:

    http://www.medscape.com/viewarticle/563919
    This same link indicates that most doctors start chelation treatment after 20 to 30 units are transfused while some wait until 100 units are transfused (bad idea). Still others only go by your serum ferritin level. You’ll need to discuss your particular situation with your doctor to see what he bases the start of chelation on.

    Bill F

    #20778
    billboy
    Participant

    For what it’s worth, I thought I’d add that serum ferritin(SF) is a rather crude indicator of iron stores. The really significant measure is the LIC or liver iron concentration. That measurement is most easily obtained by a biopsy or your liver, but that is an invasive, expensive(compared to SF) and painful procedure. There are some other ways to get the LIC without being invasive; however they are expensive. One way is by MRI and another is via a SQUID machine of which there are only four in the states. One major reason the SF is a crude indicator is that it is an ‘acute phase reactant’ meaning that factors other than iron affect its value – namely inflammation or infection. My last SF measurement was 1136, well above 1000, but my doctor decided to wait a month and recheck it before starting on Exjade again. Hope this helps.

    Bill F

    #20779
    celebrations
    Participant

    Hi Bill,
    thank you for your reply.
    Mine fits in very well into, what you describe.
    Just saw my hemo today. He’ll check my ferritin level once more within a month’s range, before he will decide to put me on Exjade…
    Also I learnt that 5 tx with two units each actually are 10 tx. So I have had 10 since February 2008.
    Bergit

Viewing 12 posts - 1 through 12 (of 12 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert