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 Sun Mar 25, 2018, 05:24 PM
JennyM JennyM is offline
Member
 
Join Date: Mar 2018
Location: Richmond, Virginia
Posts: 12
Question Was diagnosed with MDS in 2003 I've been on filgastrum 1 a week since 2006 is that ok

I've dealt with low white counts and neutropenia though nobody wants to treat the MDS

this is my BMB I'm not sure if I'm getting the right treatment

The bone marrow aspirate shows trilineage hematopoiesis and full maturation. The M:E ratio is 1.2:1 due to erythroid hyperplasia. The erythoid cells also show megaloblastoid changes and dysplastic nuclei are seen in a few normoblasts. A few granulocytes show hypolobation and hypogranular features. There is an adequate number of megakaryocytes.

The core biopsy reveals a cellularity of 50% with erythroid hyperplasia.

Abnormal localization of immature precursors is not present.

Megakaryocytes are normal in number, but many cells are hypolobated and/or microcytic. Normal hematopoiesis and maturation are present in three cell lines. The bony trabeculae are unremarkable. PAS and Giemsa stains are confirmatory. Iron stain detects no stainable iron.

DIAGNOSIS:
BONE MARROW, POSTERIOR ILIAC CREST, SIDE NOT SPECIFIED, CORE BIOPSY AND ASPIRATE:
‐ Refractory cytopenia with multilineage dysplasia, mild.

Comment: The patient has anemia and leukopenia with mild dysplastic changes in three cell lines. The erythroid series shows megaloblastoid changes with dysplastic nuclei demonstrated in a small percentage of normoblasts. The granulocytes reveal hypolobation and/or hypogranularity in a few cells. The megakaryocytes show hypolobation and microcytic forms.
Supplementary Report:
Reply With Quote
  #2  
Old Sun Mar 25, 2018, 05:43 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Jenny,

What makes you question the treatment you are getting? Have your bone marrow biopsy reports changed since previous years?

Your bone marrow biopsy report indicates that you have malformed cells in all three blood cells lines, but the condition is deemed "mild."

"Normal hematopoiesis" means that blood cells are being created in your marrow, so that's good news.

50% cellularity is likely a concern if you are college age or younger. But it's not a concern if you are a senior citizen, because cellularity gradually decreases over a lifetime.

How are your blood counts, as measured by routine CBC (complete blood count) tests? If your counts are normal, doctors often recommend a "wait and watch" approach, and you may not need much in the way of treatment.

On the other hand, if your blood counts are low, then you may need treatment. That could be the reason you've been given filgrastim, which is a growth factor (or "G-CSF" for "granulocyte colony stimulating factor"). It's a medicine for boosting your white cell count, helping prevent infections.
__________________
Founder of Marrowforums and caregiver for my wife
Reply With Quote
  #3  
Old Mon Mar 26, 2018, 12:30 PM
JennyM JennyM is offline
Member
 
Join Date: Mar 2018
Location: Richmond, Virginia
Posts: 12
Question Filgastrum treatment

I was 30 when the BMB was done I was told filgastrum has side effects I've been on it for 10 yrs. though my wbc rarely goes above 4 an I have continuous infections I was neutropenic .8 my wbc was 2.8 and plt 98,000 how much is the filgastrum suppose to increase your counts
Reply With Quote
  #4  
Old Mon Mar 26, 2018, 05:17 PM
JennyM JennyM is offline
Member
 
Join Date: Mar 2018
Location: Richmond, Virginia
Posts: 12
Red face My counts are going down worried

Just had my blood work done I've been off the neupogen since feb 29th
my wbc was 3.9 mar. 15th now 3.3, neu 2.3 now 1.3 was 70% no 38% plt was 155 now 132.
been really tired, and have a sore throat they want me to wait to take the neupogen until after my BMB April 16th.

My ANC going from 2.3 to 1.3 should I be concerned?
Reply With Quote
  #5  
Old Mon Mar 26, 2018, 07:01 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Quote:
Originally Posted by JennyM View Post
I was 30 when the BMB was done I was told filgastrum has side effects I've been on it for 10 yrs. though my wbc rarely goes above 4 an I have continuous infections I was neutropenic .8 my wbc was 2.8 and plt 98,000 how much is the filgastrum suppose to increase your counts
Since you've been taking filgrastim for so long, it's clear that you're able to tolerate any side effects. The effects of filgrastim vary individually. The dosase is individual too, depending on your condition and your weight. If it keeps your WBC near 4 rather than 0.8, it's definitely helping, but having frequent infections means you are still at risk.

Quote:
Originally Posted by JennyM View Post
Just had my blood work done I've been off the neupogen since feb 29th
my wbc was 3.9 mar. 15th now 3.3, neu 2.3 now 1.3 was 70% no 38% plt was 155 now 132.
been really tired, and have a sore throat they want me to wait to take the neupogen until after my BMB April 16th.

My ANC going from 2.3 to 1.3 should I be concerned?
I'm a caregiver, not a physician, but I would be concerned if my counts were dropping like this. A single CBC test can't always be trusted, but if your counts are checked again and have dropped further, and if your ANC is still less than 1.5 (which is considered "mild neutropenia") then I'd ask for an appointment to discuss it rather than wait for results from a bone marrow biopsy that's still weeks away.
__________________
Founder of Marrowforums and caregiver for my wife
Reply With Quote
  #6  
Old Mon Mar 26, 2018, 07:35 PM
JennyM JennyM is offline
Member
 
Join Date: Mar 2018
Location: Richmond, Virginia
Posts: 12
thanks Neil

Thanks for the advice, but I spoke with the nurse after my results and said to not take the neupogin and next see me for the BMB
what are the symptoms to look for of my counts getting lower?
Reply With Quote
  #7  
Old Tue Mar 27, 2018, 03:08 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Infections, which are already a problem for you, are the risk when you have a low ANC. With low platelets you may experience bruising, petechiae (little spots on the skin), nosebleeds, heavy periods, and trouble stopping bleeding from cuts.

Perhaps you've already experienced some of these symptoms, but I'd check with the doctor if you experience any new and unusual symptoms.
__________________
Founder of Marrowforums and caregiver for my wife
Reply With Quote
  #8  
Old Tue Mar 27, 2018, 06:23 PM
JennyM JennyM is offline
Member
 
Join Date: Mar 2018
Location: Richmond, Virginia
Posts: 12
Question Rash

I keep getting a bright red rash, one just showed up this morning on my stomach it's raised about 1 in wide 2 in long but don't know why have it lighter on the inside of my elbow for weeks and had it on my legs that went away nobody can tell me what's causing them
Reply With Quote
  #9  
Old Wed Mar 28, 2018, 05:03 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Quote:
Originally Posted by JennyM View Post
I keep getting a bright red rash, one just showed up this morning on my stomach it's raised about 1 in wide 2 in long but don't know why have it lighter on the inside of my elbow for weeks and had it on my legs that went away nobody can tell me what's causing them
If the discoloration is caused by low platelets, then it may be a bruise, not a rash. You can ask about it at your appointment.
__________________
Founder of Marrowforums and caregiver for my wife
Reply With Quote
  #10  
Old Wed Mar 28, 2018, 07:13 PM
JennyM JennyM is offline
Member
 
Join Date: Mar 2018
Location: Richmond, Virginia
Posts: 12
unusual rash

Thanks Neil for the response but unfortunately it is a rash gold bond has helped it
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
MDS - VA assigns diagnostic code 7725 Tommy Daniels MDS 4 Sun Jan 22, 2017 03:51 PM
My dad just diagnosed with MDS. Please read.. stayinghopeful MDS 49 Wed Mar 20, 2013 12:43 AM
Just diagnosed with MDS - RAEB-2, please help. Wassi MDS 21 Sun Nov 30, 2008 12:14 AM


All times are GMT -4. The time now is 02:51 PM.


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