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IV Iron -

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#1 Joy_in_Phoenix


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Posted 30 July 2013 - 10:01 PM

Hi everyone - first I want to say how helpful it has been reading everyones posts and responses.. What a great group of people!!

I had my CBC yesterday, including iron, and ferritin testing.

My PA called tonight at 7pm (office closes at 5) to tell me my iron saturation came back at 12 and my ferritin was 3, my hemoglobin is 10.9.

She said I need to get set up on a 5 week treatment, 1 x week for Iron IV.

Any one have this and could tell me more? I was also told it takes hours! My boss isn't going to like that part.. How long does it last in my body, and once we attain high levels is it possible for me to try and keep it up with red meat and greens?

Thank you anyone and everyone !!!



#2 jjg


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Posted 31 July 2013 - 01:41 AM

Hi Joy, I've had one iron IV and ridiculous numbers of iron injections. I had the IV iron when my ferritin was 2 and only the one transfusion was required. It took all day but it was a Saturday. It bumped my levels up into the 70s. With both the injections and IV my iron holds for a few months before slowly slipping lowish. I then get one or two injections to bump it back up rather than letting it get v low and lead to low hemoglobin. We don't really know why and it was a problem I had well before CML. In fact it was testing for this that lead to me being dx very very early in chronic phase. I'd go the IV route and then work on diet and oral iron (if your tummy can take them, mine can't). The injections work just fine but when you're iron is v low you need too many so IV is better. My hematologist tells me there is now a newer IV that can be all done in <30mins but I'd rather just not let it get too low.

Gleevec is coated with iron, but even when I was taking 800mg daily with silly combinations of 100mg and 400mg tablets my iron still went low and I'm betting the iron was just adding to the misery. Since being on Tasigna (9 months) I've had 3 iron injections and have noticed that the night/day after have been exceptionally achey, probably just chance but I'd be interested to hear if you notice anything.

Dx Dec 2010 @37

2x IVF egg collection

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April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

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PCRU Feb 2017

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