IV iron, still not binding

[PamyRn]

Im a MDS/AML/SCT survivor. 5yrs cancer free! I have a good friend, Patty, who has MDS. Her major issue is her iron is not binding. She has had multiple iron infusions and still it shows that she has a lot of free iron floating around but that it still is not binding. I would love to share any thoughts any of you might have that has gone through similar stuff! Look forward to hearing from you!
Pam

[Mary4Mike]

Pam,
Congratulations! I am sure you can imagine how good your news does for my heart. Did you end up at U of M? Aren’t they wonderful there? September 30 will be 1 year for my husband. He is doing great.

As far as iron not binding, I am not familiar with that malady. I will do some checking on that.

Again, all the best!

[simplistic007]

Mary Moffitt called me and told me that they found a match. When I asked if it was a perfect match, they stated almost a perfect match. Do you know if I should insist on a perfect match. I have no siblings so I have to wait for a donor. But I really hope for a perfect match not an almost perfect match or is it that they refer to it as an almost perfect match to not say perfect match because nothing is perfect. Any light on this, I would greatly appreciated. Thank you.

[Mary4Mike]

I am by no means an expert on this. When they told Mike his sister was a perfect match, they said she matched 10 out of 10. I would ask if they check the whole donor registry or if once they come across a close match, the search stops. Ask them what type of outcome you can hope for with this type of match. Make a list of all the questions you need answered. They should be more than willing to help you with this, but of course the decision must be yours. In order to make this type of decision, you have to have ALL the facts. Mike was never once pressured to go ahead with this by the medical staff, but they did lay out the possibilities if he didn’t go through with it. It is a BIG LIFE decision and once you have made it, whatever it is, don’t look back.

Keep in touch!

[Mary4Mike]

Pam,

Google Lactoferrin. Does this sound like anything that might help your friend. Of course, you would want to run this by her doctor. I have found through this whole MDS, chemo, transplant, and medical community involvement that there is little or no respect for alternative measures. It comes across that they haven’t been educated in natural things so it is never an option. This has never stopped me from checking out things that could be incorporated along with what the doctors were offering and I alway let them know what we were using. That being said, the lactoferrin never helped bring down Mike’s iron levels, but that is different than iron not binding. Lactoferrin is an iron binder.

After checking this out, I would appreciate your opinion on this.

[simplistic007]

Mary, thank you. You have helped me so much emotionally. I was told almost perfect 9 out of 10, but when I go see them next week, if I need to go through this, I want to insist if a perfect match is possible and to keep searching. Thank you.

[maggiemag]

Pam, congratulations on being such a survivor. As for your friend, I really do not understand what you mean by iron not binding. Heme was never my area of expertise and it it sooo complicated! I will say that any lab test related to iron must be viewed in context with the whole iron panel. A little more of her history may help me figure something out; or not. Is she transfusion dependent? What are her numbers? I have learned that if there is a change in the overall picture, that my heme/onc would insist on doing another BMB to see if things have progressed. Does she have faith in her physician? What treatment has she had so far?
Margaret (Mags)

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