Ferritin
 

Hi all, my mum ferritin level is at 7755 this month and it was about the same level 6 months back, a year back the ferritin was at 3758. Seems the ferritin has double up in a year. She is consuming ferriprox now, the trainee hema was proposing to have desferral. Need some advice on this proposal, should my mom wait a little bit longer by monitoring the ferritin level or follow the proposal, starts desferral immediately. All comments are most welcome. Thanks in advance!

Ferritin
 

Hi Teo!
Your mother's ferritin is really quite high. Many articles about iron overload for low risk MDS patients looked at iron in the liver and in the heart. Some doctors thought that iron in these organs not was so dangerous for MDS patients as for patients with blood diseases from childhood like Thalassemia.

Today they write more about iron's adverse effects on young red blood cells (erythroid precursors).
http://www.bloodjournal.org/content/...o-checked=true

I have got 75 Desferal infusions during 4 days from a small home pump in connection with TXs without adverse effects. Do you know how your mother's doctor will administrate Desferal?
Kind regards
Birgitta-A

Ferritin
 

Hi Birgitta-A,

Thanks for the info.

For liver n heart iron checking, can we rely on the blood test like ALT, albumin, creatinine? So far, all these results look ok besides the creatinine is a little bit high on the low side of the range.

About the desferral infusion, the hema actually recommends to use the "thalapump 20", I guess kind of small home pump as well. I have not seen it myself, get this info from my sister. http://www.maycare.com

Actually there were 2 options for desferral syringe pump, thalapump 20 or injectomat agilia, looks like injectomat agiliia is more difficult administer by my mom, so my sister choose thalapump 20 as it's straight forward. I guess.

Desferal
 

Hi Teo!
Interesting with the "thalapump 20". It looks very different from my own home pump, that looks like a lemon and is carried in a pouch round the waist. I don't administrate anything but have to keep it out of water when taking a shower. http://www.iflo.com/prod_homepump.php

In India you have Thalassemia and I suppose a lot of experiece of iron chelation - "thalapump 20" can function very well.

To examine iron in the liver and the heart doctors use MRI. Hopefully your mother's liver and heart function OK. Remember that we manage well with one third of the liver.
Good luck!
Kind regards
Birgitta-A

Ferritin
 

Hi Birgitta-A,

Yea 100% different.

Actually I am from Malaysia not from India. I agreed that most/all of the thalassemia patients in Malaysia are using thalapump 20 as in Malaysia GEneral Hospital, this is the most commonly use pump. We don't have much option here.
I hope this pump can be used for MDS patient as well.

Thanks for the info on how to check the iron in liver n heart. Good to know.

Ferritin
 

Hi Teo!
Sorry about India and Malaysia. In any case all kinds of pumps should work for all kinds of patients.
Kind regards
Birgitta-A