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MDS Myelodysplastic syndromes

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  #1  
Old Tue Dec 16, 2014, 10:43 AM
Data Data is offline
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Question Normal EPO level?

I started Epogen a week ago and was told to hold off this week's injection until I heard from the clinic. A tech just called and said my hemoglobin was unchanged (9.1) so I should go ahead and give myself the second injection. She also told me that my EPO level had been 578.4. In looking on the Internet I saw normal ranges for EPO around 4 -20 mU/mL. Mine seems awful high. Is that possible and what is the significance?

Cheers

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #2  
Old Tue Dec 16, 2014, 03:50 PM
Birgitta-A Birgitta-A is offline
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EPO

Hi Data!
You know EPO is made by our kidneys - when our HGB is low the kidneys try to increase EPO that should increase HGB. Many of us have a high EPO at dx because our kidneys have tried during a long time to increase HGB.

My EPO was more than 800 at dx - that means that I never got EPO drugs since they don't work well if the patients EPO initially is more than 500.

Hopefully Epogen will increase your HGB even if you are a "borderline patient" considering EPO treatment .
Kind regards
Birgitta-A
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  #3  
Old Tue Dec 16, 2014, 03:59 PM
Data Data is offline
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thanks

Quote:
Originally Posted by Birgitta-A View Post
Hi Data!
You know EPO is made by our kidneys - when our HGB is low the kidneys try to increase EPO that should increase HGB. Many of us have a high EPO at dx because our kidneys have tried during a long time to increase HGB.

My EPO was more than 800 at dx - that means that I never got EPO drugs since they don't work well if the patients EPO initially is more than 500.

Hopefully Epogen will increase your HGB even if you are a "borderline patient" considering EPO treatment .
Kind regards

Birgitta-A
Thanks for the info. I had heard that if your EPO level was high the chance of Epogen working was low but I had never heard the cut off. I guess I shouldn't hold out too much hope. Thanks again.

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #4  
Old Wed Dec 17, 2014, 06:22 AM
Birgitta-A Birgitta-A is offline
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EPO drugs

Hi Data!
Here is info about EPO drugs. Remember that if EPO alone doesn't work drugs like Neupogen should be added.
http://www.qxmd.com/calculate-online...astic-syndrome
Kind regards
Birgitta-A
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  #5  
Old Wed Dec 17, 2014, 08:00 AM
Data Data is offline
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Very Interesting

Birgitta-A,
My levels gave me a 23% chance. I guess that is better than none. Thanks. I will talk to my doc about adding Neupogen.

Thanks again and have a happy holiday.

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #6  
Old Wed Dec 17, 2014, 08:43 AM
Marlene Marlene is offline
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You need to give it more than a week to work. It can take up to 13 weeks before you see any significant changes. It would be helpful in tracking efficacy if they would check retic% and Absolute Retic counts. It would have been good to know that before starting. An increase in these indicates an increase in red cell production that will eventually show up in the HGB.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #7  
Old Wed Dec 17, 2014, 08:47 AM
Data Data is offline
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Quote:
Originally Posted by Marlene View Post
You need to give it more than a week to work. It can take up to 13 weeks before you see any significant changes. It would be helpful in tracking efficacy if they would check retic% and Absolute Retic counts. It would have been good to know that before starting. An increase in these indicates an increase in red cell production that will eventually show up in the HGB.
Marlene,
I agree. I wasn't giving up yet!

Have a great holiday!!

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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