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  #1  
Old Fri Aug 13, 2010, 04:40 PM
Ellieknits Ellieknits is offline
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New to the Forum

My 84-year-old father was just diagnosed with aplastic anemia. I believe he is opting for supportive care, as he can have no more transfusions due to advanced kidney failure. His specialist wants to start him on EPO injections.

He had four pints of blood given about one week ago.

This anemia came on suddenly within the last two months.

I have done some internet research on this disorder, but have not been able to find much info. on EPO injections, and its success rate as the sole treatment for someone his age.

Has anyone had any experience with this? What can we expect?

Am trying to give him much support.

Thanks so much--

Ellie
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  #2  
Old Sat Aug 14, 2010, 01:44 PM
JimK JimK is offline
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EPO

Hi Ellie,

Since your dad is having kidney failure his kidneys are not producing enough Erythropoietin (EPO) and this is what tells the bone marrow to produce red blood cells. Sometimes this does not work but the only thing to do is to try it. The best drug for this is Arenesp made by Amgen. Amgen also make Procrit but it requires more frequent injections. My 92 yr old father-in-law has been getting procrit injections for several years and it does help him.

I tried Aranesp for several months with little positive results but my kidneys are OK and I am getting good results from Revlimid. I think having your dad try Aranesp would be a great idea.

Best of luck for you and your dad.
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Old Sat Aug 14, 2010, 03:18 PM
Ellieknits Ellieknits is offline
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Hi, Jim

Thanks so much for your kind reply. I'm glad to hear that you and your FIL are doing well.

My Dad's specialist feels the kidney problems, etc, were all caused by the aplastic anemia. I think Dad is going to start on the drug you mentioned, and, hopefully, this will stimulate his bone marrow.

I wish you all the best, and thank you again--

Ellie
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  #4  
Old Sun Aug 15, 2010, 09:32 AM
Marlene Marlene is offline
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His doctor should be able to measure how much EPO his kidneys are producing and if it's 500 or less, there's a very good chance the EPO can help. You need to make sure his iron levels are good. A low normal is too low so be sure to find out the exact results. B12 and folate levels should be checked also. EPO can take a while to work in someone with SAA. Your doc can monitor the absolute retic count (number of new, immature red cells) in addition to HGB/HCT.

Are all three lines effected? If the white cell are very low, he can be given a growth factor to boost those also.
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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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #5  
Old Sun Aug 15, 2010, 11:32 AM
Ellieknits Ellieknits is offline
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Hi, Marlene

Thanks for your kind response.

Yes, Dad said that all three lines are effected. Dad lives far away from me, and most of our communication has been by phone. My SM goes to his appointments with him, and writes everything down that occurs at his appointments.

What is concerning me is that he can have no more blood transfusions, and I'm wondering if the EPO will keep his blood counts up so that he doesn't have severe symptoms. Dad doesn't share alot with us about all this, and we find out he has been in hospital after he comes home. He is still quite competent mentally, and makes his own decisions. We really are not aware of all that is going on with him physically.

Thank you, again!

All the Best--

Ellie
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  #6  
Old Mon Aug 16, 2010, 08:02 AM
Marlene Marlene is offline
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That's a difficult situation when you are not able to there at the appointments to ask the questions and get the information first hand. It really puts you at a disadvantage.

I know blood transfusions can effect the kidneys but it's pretty rare and usually happens when there's a poor matching involved. And if they transfuse too fast, that's a problem especially in the elderly.

Sounds like the EPO can help in his case since his kidneys are not functioning properly. They really need to make sure he adequate iron stored in order to this work.

If his doc has limited experience with SAA, it would be good to get another opinion from one of the few doc with experience just to be sure he's getting the right care. Proper supportive care can go a long way to making him feel better.

Wishing the best...
M
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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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #7  
Old Tue Aug 17, 2010, 12:09 PM
Ellieknits Ellieknits is offline
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Hi, Marlene

I'm going up to see my father the first week of Sept, so, hopefully, will be able to find out more what is going on. I'm retiring at the end of the month, so I will be more available.

I've been doing some research on AA, and read that people who already have low levels of EPO in their blood may actually do better on the growth factors. I hope so.

Talked to Dad yesterday, and he said he is feeling better after the transfusion. He doesn't know when the EPO injections will start--am not sure how well his VA doc is communicating with him.

I hope you and your husband are well--

Ellie
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  #8  
Old Wed Aug 18, 2010, 07:50 AM
Marlene Marlene is offline
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Yeah, the EPO has a lot of potential for him. It worked for John for quite a while. His EPO levels were under 500 when he used it and it brought up his red cells quicker so he became transfusion free sooner than if he didn't use it. But it can take up to 6 -12 weeks to see results. If his EPO is really low, you may see a quicker response.

He used it after his treatment and only when his retic % got up to 2%. So it is a little different protocol than your Dad's.
__________________
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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.

Last edited by Marlene : Wed Aug 18, 2010 at 03:39 PM.
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  #9  
Old Wed Aug 18, 2010, 02:56 PM
Ellieknits Ellieknits is offline
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Hi, Marlene

That is encouraging to hear that the EPO helped John. I am glad to read that he is doing better.

I appreciate your writing to me, Marlene. It is so difficult being a caregiver. I cared for my Mom (she had vascular dementia), alot different from the AA. Dad is still quite with it.

I'm looking forward to seeing him in Sept. I think my husband and I may drive up to Seattle, where Dad lives.

Best--

Ellie
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