Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Thu Oct 30, 2014, 02:16 PM
teo teo is offline
Member
 
Join Date: Oct 2012
Location: Johor, Malaysia
Posts: 117
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!
__________________
Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
Reply With Quote
  #2  
Old Thu Oct 30, 2014, 04:12 PM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
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
Reply With Quote
  #3  
Old Fri Oct 31, 2014, 12:58 AM
teo teo is offline
Member
 
Join Date: Oct 2012
Location: Johor, Malaysia
Posts: 117
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.
__________________
Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
Reply With Quote
  #4  
Old Fri Oct 31, 2014, 11:41 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
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
Reply With Quote
  #5  
Old Sat Nov 1, 2014, 03:11 PM
teo teo is offline
Member
 
Join Date: Oct 2012
Location: Johor, Malaysia
Posts: 117
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.

Quote:
Originally Posted by Birgitta-A View Post
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
__________________
Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
Reply With Quote
  #6  
Old Sun Nov 2, 2014, 07:24 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
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
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
re-post ferritin increase and platelet decrease after bmt wanglucky Transplants 10 Tue May 3, 2016 02:18 PM
Ferritin drop prior to phlebotomy dfantle Transfusions and Iron Overload 7 Mon Jan 13, 2014 12:39 PM
Ferritin level vikasgoyal Transfusions and Iron Overload 24 Thu Nov 1, 2012 12:39 PM
Hemoglobin Numbers at Transfusion ..... annmonster MDS 25 Fri Feb 3, 2012 08:45 AM
Ferritin and Transfusions (and a bit on epogen) Chris-A Transfusions and Iron Overload 9 Sun Apr 19, 2009 06:46 AM


All times are GMT -4. The time now is 12:23 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2020, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2020 Marrowforums.org