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 Jul 19, 2018, 07:02 PM
cdseibold cdseibold is offline
Member
 
Join Date: Sep 2012
Location: Pinewood, MN
Posts: 43
MDS and Arimidex (Anastrozole)

I have been on watch and weight for 6 years with my intermediate mds.
I had a mastectomy for breast cancer in March and put on arimidex.
It is an anti-estrogen type drug; I had been on tamoxofin a decade ago with no problems.
In the two months I have become more and more tired all the time. Now I need to nap and nap and am too exhausted to do the simple household chores.
My internist ordered a CBC and my numbers are in the dumper all of a sudden. White, red and platelets have shifted down.
My hematologist and I agreed for me to stop the arimidex. I am praying that it is a big part of the problem. My hematologist does not believe it is a high probability to be the culprit.
I am probably looking at a bone marrow biopsy in the next month. Golly my favorite test.

My Dr ordered a new test that I don't seem to have before. Reticulocyte. It is a measure of immature red blood cells. Normal is under 1% and I am at 9. But
googling has only confused me. Articles suggest that MDS patients have low numbers and high is very unusual for MDS. That sure sounds backwards.
Any thoughts on this type of test.

He also tested my thyroid level and folic acid level which were normal. Ruling out other possible causes of fatigue.

I am the sole caretaker of my disabled husband and adopted son with mental health issues. So very concerned about their care if I am unable to continue doing. Yes i have hired some help for house and outdoors.

Thanks for any input.

Carol
__________________
Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
Reply With Quote
  #2  
Old Thu Jul 19, 2018, 08:37 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
Carol,

I'm sorry that you have to deal with this, but I'm glad that your MDS has been stable for so long.

Anemia is one of the possible side effects of ARIMIDEX, but I don't know that pancytopenia (having all three blood lines low) would be a likely result. Still, ARIMIDEX is a primary suspect since it's new to your regimen and you've already ruled out some other possible causes.

From what I've read, increased reticulocytes with MDS isn't common but isn't unheard of. For example, slow maturation of the immature red cells could be causing a buildup. The clues in your bone marrow are the likely key, so enduring a bone marrow biopsy should give you some answers.

Good luck to you, your husband, and your son.
__________________
Founder of Marrowforums and caregiver for my wife
Reply With Quote
  #3  
Old Sat Jul 21, 2018, 04:20 AM
cdseibold cdseibold is offline
Member
 
Join Date: Sep 2012
Location: Pinewood, MN
Posts: 43
Arimidex

Found some papers on side effects of Arimidex. 100 plus reports of pancylopenia. So I do think it is a possible culprit. Only time will tell.

Yes I agreed to a new bone marrow biopsy on Tuesday. Oh joy. My hematologist did agree to have the samples split and half to Mayo and half to Sanford lab. Also the genetic testing will not be by FISH but my better kerotyping (sp?) Not looking forward to test but definitely results. Praying that there are no blasts found.

Appreciate your feedback.

Carol
__________________
Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
Reply With Quote
  #4  
Old Fri Jul 27, 2018, 02:28 PM
cdseibold cdseibold is offline
Member
 
Join Date: Sep 2012
Location: Pinewood, MN
Posts: 43
Good news

It has been almost 2 weeks since I stopped the arimidex. My white counts have returned to my usual levels just as the edge of the lower limit. My platelets have doubled from 44 to 88. Red levels are hanging low and no improvement, but I do feel much better and am not sleeping all day everyday.

I had a bone marrow biopsy done this week. Very excited that my blasts remain at 2 % or less. Wow, not AML, which has been my concern

Carol
__________________
Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
Reply With Quote
  #5  
Old Fri Jul 27, 2018, 10:25 PM
Diana H Diana H is offline
Member
 
Join Date: Jun 2018
Location: Basking ridge NJ
Posts: 9
Smile Arimidex

Thanks Neil and Carol share the information. ARIMIDEX can affect all three blood counts, very interesting!
Glad your counts are up.
Lifespan of RBC is about 100 days, it may take longer for your red to come up.
Wish you great health and energy!
__________________
Female, age 66, dx MDS RAEB with 15-20% blasts 9/2017. Blood counts have normalized after 3 rounds of Vidaza. Finished six cycles of Vidaza. No treatment since March 10, 2018. Currently monthly CBC, will resume Vidaza when blood counts are low.
Reply With Quote
  #6  
Old Tue Jul 31, 2018, 02:49 PM
cdseibold cdseibold is offline
Member
 
Join Date: Sep 2012
Location: Pinewood, MN
Posts: 43
Red blood counts

Oh boy if it takes 3 months to get back to my usual level summer will done and winter will be starting. That is a little discouraging. But much better than AML.
Need to have patience.

Thanks for input.
__________________
Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
Reply With Quote
  #7  
Old Sat Aug 11, 2018, 06:14 PM
cdseibold cdseibold is offline
Member
 
Join Date: Sep 2012
Location: Pinewood, MN
Posts: 43
Update

Red and white blood counts have moved up and I feel so much better. I was able to walk to barn and around the house without falling on my face on the bed.
FYI I did file a serious side effect report with the FDA on line. Not too hard to do. So keep that in mind if you have side effect problems.

Happy weekend.
__________________
Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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


All times are GMT -4. The time now is 09:22 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