Stem cell transplants for blood cancers

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High ferritin level and still transfusion dependent- Advice?

Hamish72
Posted by

Hi everyone

My sister has just had her ferritin tested (first time for 4 months) and she’s at 6,500. She is still transfusion dependent, usually having 1-2 units a week. She is extremely fatigued and on Day 270 post Allo SCT).

Has anyone experienced anything similar? What treatment did you have to remove the excess iron? She has been explained a treatment involving injecting herself and a cylinder?!, but she didn’t really take it all in (unfortunately I couldn’t be at the appointment). 

Any advice welcome.

Many thanks

Julie

moomy
Posted by

Hi Julie,

daughter had a similar problem with increasing ferritin levels but not as high, hers are around 2,500. 

They prescribed a medication for her (it binds to iron and then the body can excrete it) but it caused her really bad diarrhoea to the point she was losing weight fast, and she had to stop it. Think it was called Exjade. 

Her team now say they will think of ‘bleeding’ her at some stage.

hugs xxx

Moomy

Kirsty914
Posted by

I asked my day unit nurse about this, and he said I shouldn't be surprised if I end up going in for vena sections in the future (removing excess ferritin by removing a unit of blood) and as he explained it, when medication only does so much, removing the blood even if it's just been transfused will try and force the excess iron to produce haemoglobin as opposed to being as reliant on the transfusions, which patients need for the red cells and not the iron. But I believe they try and bind the iron with medication before going down the vena section route to see what happens with the haemoglobin. 

Paul1969
Posted by

Hi Julie

i was at 2500 post transplant and had vena sections for a coupe of years to get my levels back down to normal. I wasn’t given any medication so have no experience if that. 

Had one every four weeks at the local hospital.

Paul

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Hamish72
Posted by

Hi Moomy

Thanks for your reply, and sorry for the delay in responding. I am hoping to chat to the doctor about chelation this week to understand it better. We’ve been hijacked a bit as my sister got an infection in her PICC, and a nasty thrush infection in her throat, so spending a couple of weeks in hospital.

I hope your daughter is making good progress.

Hugs back at ya.

Juliex

Hamish72
Posted by

Hi Kirsty

Thanks for your reply, and sorry for the delay in responding. I am hoping to chat to the doctor about chelation this week to understand it better. It would be good if something could kick start haemoglobin production!

We’ve been hijacked a bit as my sister got an infection in her PICC, and a nasty thrush infection in her throat, so spending a couple of weeks in hospital.

I hope your recovery is going as well as it can.

Juliex

Hamish72
Posted by

Hi Paul

Thanks for your reply (and your other reply to me), and sorry for the delay in responding. It’s good to hear from someone who’s come out the other side.

I am hoping to chat to the doctor about chelation this week to understand it better. We’ve been hijacked a bit as my sister got an infection in her PICC, and a nasty thrush infection in her throat, so spending a couple of weeks in hospital.

Julie