Home         Forums  

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

News and Events News related to bone marrow failure diseases

Reply
 
Thread Tools Search this Thread
  #26  
Old Tue Dec 28, 2010, 09:18 AM
akita akita is offline
Member
 
Join Date: Nov 2010
Posts: 110
Hi Birgitta,

You know many patients with low platelets don't get better after platelet transfusions because the new platelets are destructed at once. Even if they try HLA matched platelets the platelet count can be very low.

This sounds tragic.

So there are people who don`t response to or tolerate platelet infusions because of preexisting immune thrombozytopenia,

and on the other side people who develop a sort of seconday platelet-immunity.. (?)

Another problem, different of that getting access to platelet transfusions in case of high probably bleeding danger, but platelets higher than 10.000,00, 20.000.

>In Sweden PFA 100 is used at most clinics but I don't know my value because when I got my dx they only used bleeding time that was supposed to be valueless but they didn't have any better methods.

Is this different now, - do they have better methods?

I read about full blood platelet aggregation tests that should be of advantage. Have you heard about it?

When i got several platelet transfusions during chemotherapies and transplantation, the doctors were aware of different platelet triggers according for the special treatment i needed (and of course in case of to low platelet count in generally). For a BMB you needed 20.000 platelets. The transfusions caused no problems and i responded well.

How is this situation in a hematological ward in treatment for aplastic situations during therapies different from that of the "long time platelet" patients...


Thank you very much for your informations and dialogue.

Kind regards,
Margarete


>My bleeding time was more than 21 minutes - they didn't measure more than that.

That should have been clear enough. Your platelet functionning was seemingly bad.
__________________
Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
Reply With Quote
  #27  
Old Tue Dec 28, 2010, 11:57 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Platelets

Hi Margarete,
When patients get refractory to platelet transfusions it is not called pre-existing Immune Thrombocytopenic Purpura but only platelet refractoriness as far as I understand. I have read many posts at this forum about that complication in MDS patients.
http://bloodjournal.hematologylibrar...ct/105/10/4106

There is another disease called Essential Thrombocythemia where the patients have very high platelet counts.

When I got my dx 2006 they didn’t use the PFA 100 method in Sweden but now they use it.

Yes, you know there are many methods but if you lab doesn’t use them it is not so interesting for me.

Good that you responded well when you got platelet transfusions!

As far as I understand the situation in a ward with patients with very low platelets can be very difficult – much depends on the platelet function. Perhaps you know that infections and bleeding are common death causes in MDS.
Kind regards
Birgitta-A
Reply With Quote
  #28  
Old Tue Dec 28, 2010, 01:03 PM
akita akita is offline
Member
 
Join Date: Nov 2010
Posts: 110
>When patients get refractory to platelet transfusions it is not called pre-existing Immune Thrombocytopenic Purpura but only platelet refractoriness as far as I understand.

Yes, this should be the right expression. The patients with ITP have only platelet refactoriness, the patients with MDS refractoriness with or without this special ITP-component have extra problems, what i understood: Infections and bleeding als common death causes, - not so in ITP where Splenectomy and some other treatments help.

>Yes, you know there are many methods but if your lab doesn`t use them it is not so interesting for me.

Is it expensive? I am asking that because we have some blood laboratories in Vienna where you can get blood results very fast. You can pay them privately - the price starting from 18 Euros, or your praciticioner writes you a recipy and they do it, probably the Common Insurance pays it. For such "specialities" it is probably necessary to go through a bit of fighting with the Insurance and the hospital, but next time they would perhaps be more sensible for your needs..

Actually, it seems to me, it could be the best if a patient could express her/his subjective need for platelet transfusions according to her/his experiences with his/her body and transfusion history and would be given it. But sometimes perhaps it is necessary to show a paper where special results are indicated, that show to the transfusion unit, that you really need that.

>Good that you responded well when you got platelet transfusions!

I was lucky with many things...

>As far as I understand the situation in a ward with patients with very low platelets can be very difficult – much depends on the platelet function.

Yes, really.

Have you already been in a hematologcal ward as a doctor, patient or visitor?

Kind regards,

Margarete
__________________
Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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
One-day Patient Conference in San Antonio, Texas, October 8, 2016 Marrowforums News and Events 2 Mon Sep 19, 2016 02:53 PM
One-day Patient Conference in San Diego, California, September 17, 2016 Marrowforums News and Events 1 Thu Sep 15, 2016 12:49 AM
One-day Patient Conference in Cincinnati, Ohio, April 30, 2016 Marrowforums News and Events 1 Tue Apr 12, 2016 01:19 PM
Abstract from the ASH 2011 Conference Birgitta-A News and Events 7 Tue Nov 29, 2011 12:19 PM
AA&MDSIF 2010 Patient & Family Conference Marrowforums News and Events 18 Mon Jul 19, 2010 10:47 AM


All times are GMT -4. The time now is 11:20 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, 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