Home         Forums  

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

AA Aplastic anemia

Reply
 
Thread Tools Search this Thread
  #1  
Old Thu Jul 14, 2022, 11:40 PM
Ellen McDonough Ellen McDonough is offline
Member
 
Join Date: Sep 2011
Location: United States,Denver,Colorado
Posts: 48
falling labs over the past year with aplastic anemia

Hi
I have noticed over the past year falling WBC's and neutrophils counts. My hematologist doesn't seem to be concerned. Recently I was also found to have iron deficiency anemia and received an iron transfusion. I was diagnosed with severe aplastic anemia 13 years ago.Treated at the time with horse ATG and Cyclosporin.Not on any current meds. I do get frequent sinus and urinary infections over the past year since my labs have dropped.
I am wondering if it might be time to check a bone marrow biopsy.My last bm bx was in 2017.
I am vegan but eat plenty of foods with iron and take extra vitamin C for absorption.I take B 12 and a multivitamin with iron.
I am seeing my hematologist tomorrow so any input would be helpful! Thanks
Ellen
__________________
Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
Reply With Quote
  #2  
Old Thu Jul 14, 2022, 11:58 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
Ellen,

You're smart to be paying attention to your counts, seeing your hematologist, and managing your diet. You're a long-term survivor, and part of the reason may be because you watch what's going on and ask questions!

You might as well start with the hematologist's opinion about your counts, how serious a concern that is, and what tests might be warranted. Infections could very well be related to your white count, so be sure to ask about that. It sounds like the changes in blood counts have been gradual. You should continue to monitor and track your counts and note any related symptoms you experience, like fatigue.

Many treatment centers have nutritionists on staff, so you might consider consulting one if you want to double-check on your dietary needs beyond iron and vitamin C. The consultation might even be covered by insurance, especially if your hematologist refers you to that department.

Please let us know what you learn.
__________________
Founder of Marrowforums and caregiver for my wife
Reply With Quote
  #3  
Old Fri Jul 15, 2022, 03:14 PM
Ellen McDonough Ellen McDonough is offline
Member
 
Join Date: Sep 2011
Location: United States,Denver,Colorado
Posts: 48
Thank you!
My friend who has severe aplastic anemia for as long as I have recently progressed to MDS.He had been diagnosed around the same time as me.He recently underwent BMT and is doing well.I guess I'm sensitive currently because of the fact my friend was doing very well for 11 years with SAA post IST and then suddenly progressed to MDS. He lives here in the Denver area and I have been trying to help him when I can post transplant.
It kinda makes me a little nervous about myself though seeing my own numbers changing.
__________________
Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
Reply With Quote
  #4  
Old Sat Jul 16, 2022, 10:17 AM
Matthew42 Matthew42 is offline
Member
 
Join Date: Jul 2021
Location: USA
Posts: 130
Dear Ellen,

I wouldn't worry about dropping neutrophils. My mother's hematologist said that aplastic anemics have autoimmune neutropenia that is usually isolated (meaning other aspects of the immune system are usually working well). Neutropenia that is neither autoimmune nor isolated is way more dangerous. That said, it's always best that neutrophils stay at around 500 or more, but being 300-500 is not that big of deal if the neutropenia is autoimmune and isolated. It's when the neutrophils average under 200 that real problems can arise, no matter the cause of the neutropenia. But, again, there are people who will have neutrophils that are under 200 for a long time and won't get serious infections. It's all a mystery. My mother's doctor said that some people have what appears as a perfect immune system and end up deathly ill from infections, viruses, etc.

By the way, what kind of MDS does your friend now have? Is it hypocellular MDS (rare autoimmune form of MDS), which is treated the same as classic aplastic anemia? Proper MDS is not autoimmune, as you probably know, and is treated very differently than aplastic anemia. My mother's doctor said that hypocellular MDS and aplastic anemia are so similar that they are sometimes not distinguishable from each other, except for the higher presence of dysplastic cells in the bone marrow. And, sometimes, the amount of dysplasia changes drastically over time, going back between aplastic anemia and hypocellular MDS.

I am sincerely wishing you the best of health, dear Ellen. May you be happy and healthy.
Reply With Quote
  #5  
Old Tue Jul 19, 2022, 11:43 PM
Ellen McDonough Ellen McDonough is offline
Member
 
Join Date: Sep 2011
Location: United States,Denver,Colorado
Posts: 48
Thank you Matthew. Unfortunately my neutrophil count has dropped and infections have been associated with it. I never used to get infections before the past 1 1/2years. This is a change . This is why I am concerned along with a ferritin level and RBC's that have dropped. These are all changes. This why I am concerned.I spoke to my hematologist and he is recommending colonoscopy to determine if the RBC's and ferritin drop are coming from the colon.My friend has had the MDS associated with cancer. They had found cancer cells in his marrow. Luckily post transplant he is cancer free.
__________________
Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
Reply With Quote
  #6  
Old Sun Jul 24, 2022, 01:08 AM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 769
Hi Ellen,
I am about your age and also received ATG in 2009. I have been doing well with a partial response but am cyclosporine dependent.

My ANC is also low and has also been slowly falling over the years. My hematologist isn't overly concerned, but like you, I am a little worried with the trajectory.

Just thought I'd let you know that you are not alone. I'll share anything that I learn and am interested in what you learn along the way.

Take care!
__________________
58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote
  #7  
Old Sun Jul 24, 2022, 09:28 AM
Matthew42 Matthew42 is offline
Member
 
Join Date: Jul 2021
Location: USA
Posts: 130
Quote:
Originally Posted by Hopeful View Post
Hi Ellen,
I am about your age and also received ATG in 2009. I have been doing well with a partial response but am cyclosporine dependent.

My ANC is also low and has also been slowly falling over the years. My hematologist isn't overly concerned, but like you, I am a little worried with the trajectory.

Just thought I'd let you know that you are not alone. I'll share anything that I learn and am interested in what you learn along the way.

Take care!

Dear Hopeful,

If you don't mind me asking, what is considered a low dose of cyclosporine?

Please take good care of yourself.

Wishing you the best of health.
Reply With Quote
  #8  
Old Sun Jul 24, 2022, 02:59 PM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 769
Hi Matthew,

I'm on a "maintenance" dose which is 2.5 mg/kg of body weight.
__________________
58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote
  #9  
Old Tue Aug 2, 2022, 11:38 PM
Ellen McDonough Ellen McDonough is offline
Member
 
Join Date: Sep 2011
Location: United States,Denver,Colorado
Posts: 48
To Hopeful

Thank you so much! That makes me feel better : )
__________________
Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
Reply With Quote
  #10  
Old Tue Aug 2, 2022, 11:44 PM
Ellen McDonough Ellen McDonough is offline
Member
 
Join Date: Sep 2011
Location: United States,Denver,Colorado
Posts: 48
I had an iron transfusion about 2 weeks ago. Had CBC drawn since then and labs are already down. Hgb-11, WBC's-2.3, and-1.3, RBC-3.68 and 2+ Anisocytosis- which means anemia.
Why are my counts already down ?
My hematologist isn't budging with regards to doing a bone marrow biopsy...He wants to see a trend. I have a colonoscopy scheduled for 9/28 to check if anemia is coming from there.
It is a big change for me.I went hiking last weekend and really had no energy compared to the usual. I walked the Camino de Santiago after I got better from aplastic anemia in 2015.This is a change.... It's scaring me.
__________________
Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
Reply With Quote
  #11  
Old Wed Aug 10, 2022, 07:13 PM
Meri T. Meri T. is offline
Member
 
Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 175
Hello Ellen,
I just wanted to say that my best friend walked the Camino de Santiago for me when I was in the hospital. I'm glad to say it worked really well for me, spiritually.
I hope you feel better soon.
Meri.
__________________
Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
Reply With Quote
  #12  
Old Wed Aug 17, 2022, 11:12 AM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 769
Hi Ellen,

Your anemia is concerning for a bleed somewhere. Can you move up your colonoscopy date? Have you been recently tested for PNH?

The Camino de Santiago is on my bucket list!
__________________
58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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
Aplastic Anemia post pregnancy delivery Jane4224 AA 7 Wed Jan 15, 2020 03:28 PM
JUST diagnosed with Aplastic Anemia TASHMAC Questions and Answers 6 Tue Mar 27, 2018 09:09 AM
I am NOT aplastic anemia (new member) KristinR Tell Your Story 3 Wed Jul 16, 2014 11:51 AM
aplastic anemia and sudden severe hip pain Ellen McDonough AA 18 Fri Dec 6, 2013 08:10 AM
Free Aplastic Anemia Update in Houston, May 2010 Marrowforums News and Events 0 Fri Apr 16, 2010 02:43 AM


All times are GMT -4. The time now is 09:21 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