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AA Aplastic anemia

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  #1  
Old Tue Sep 23, 2014, 07:42 PM
davisk davisk is offline
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ATG RESPONSE/ Please Comment Experience

Hello All:

I started taking cyclosporine 2.5 months before atg treatment, and have been on ever since. I received my atg on August 25th. The week immediately after my counts went up WBC 4.5, ANC 1.5, and hb,9. Unfortunately, all my counts are dropping and im very nervous, seeing as though I have been on cylo for a while. Is is it normal for counts to drop like this after they have initially risen? Will you see drops before sustained improvement?

Thank you for reading
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Old Sun Oct 5, 2014, 11:15 AM
Data Data is offline
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Quote:
Originally Posted by davisk View Post
Hello All:

I started taking cyclosporine 2.5 months before atg treatment, and have been on ever since. I received my atg on August 25th. The week immediately after my counts went up WBC 4.5, ANC 1.5, and hb,9. Unfortunately, all my counts are dropping and im very nervous, seeing as though I have been on cylo for a while. Is is it normal for counts to drop like this after they have initially risen? Will you see drops before sustained improvement?

Thank you for reading
Hello,
I am sorry I don't know the answer to your question but I would like to ask you about your ATG treatment, if I may. I am curious as to how long it was, where it was given (inpatient/outpatient), and how you tolerated it.

Thanks and best wishes to you.

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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  #3  
Old Sun Oct 5, 2014, 02:42 PM
curlygirl curlygirl is offline
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Yes, if they gave you prednisone during and after the ATG, the predinsone can make your numbers go up and then as you taper off the prednisone they go back down again to when they started. Eventually as the ATG kicks in your numbers will hopefully go up again. Responding to prednisone initially is a good sign, it indicates that the cause is autoimmune and that your bone marrow has the reserves necessary to grow back.
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  #4  
Old Mon Oct 6, 2014, 01:35 AM
Optimistic Optimistic is offline
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Personal experience from ATG my count stayed low in fact dropped fast I needed transfusions at least 2-3 time a week, I was on prredisone & cyclosporine, after sometime my counts slowly started rising. Hope ur in good health this post is kinda late but better late than never
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  #5  
Old Tue Oct 7, 2014, 06:50 PM
hxmxsx hxmxsx is offline
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I'd like to share my husband's recent experience of ATG/Cis treatment. He was admitted to UCSF on 9/17 and was discharged on 9/26. The treatment included putting in a PiCC line and 4 days of infusion of ATG. After the infusion, he had blood drawn every morning at 6am to monitor his CBC, Cyclosporine level and Metabolic panel. During the ATG (3rd day), he got 2 units of red blood and 1 unit of platelet transfusion. Before discharge, he received 2 units of platelet infusion. All of the CBC were OK (WBC 2.9, HgB: 8.9, platelet 19, ANC 1.87) when discharged. He went back to see the doctor on 10/3/2014 and his WBC was 3.9, HgB: 8.9, platelet 11. So he received 1 unit of platelet transfusion. He had no adverse side effect during treatment. UCSF is very experienced in administrating ATG and has a wonderful team of doctors/nurses/staff. My husband is now slowing regaining his strength by taking daily walks of 6-8 miles. He is my hero! So are all of you on this forum. We learned a lot from you.

Last edited by hxmxsx : Tue Oct 7, 2014 at 07:57 PM.
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  #6  
Old Tue Oct 7, 2014, 07:06 PM
Data Data is offline
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Quote:
Originally Posted by hxmxsx View Post
I'd like to share my husband's recent experience of ATG/Cis treatment. He was admitted to UCSF on 9/17 and was discharged on 9/26. The treatment included putting in a PiCC line and 4 days of infusion of ATG. After the infusion, he had blood drawn every morning at 6am to monitor his CBC, Cyclosporine level and Metabolic panel. During the ATG (3rd day), he got 2 units of red blood and 1 unit of platelet transfusion. Before discharge, he received 2 units of platelet infusion. All of the CBC were OK (WBC 2.9, HgB: 8.9, platelet 19, ANC 3.8) when discharged. He went back to see the doctor on 10/3/2014 and his WBC was 3.9, HgB: 8.9, platelet 11. So he received 1 unit of platelet transfusion. He had no adverse side effect during treatment. UCSF is very experienced in administrating ATG and has a wonderful team of doctors/nurses/staff. My husband is now slowing regaining his strength by taking daily walks of 6-8 miles. He is my hero! So are all of you on this forum. We learned a lot from you.
Thanks for sharing this with the group. My doc cautioned me that "people on forums usually only share the horror stories". I am glad to hear of the good results your husband had. Best wishes to the both of you!!!!!
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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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  #7  
Old Tue Oct 7, 2014, 08:22 PM
sbk007 sbk007 is offline
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Data, I disagree with your Doctor. She obviously never read these posts. If KMAC's story wasn't reason to be optimistic, I don't know what else to say other than this forums different.
I find most Doctors don't like the internet. However, there are exceptions to the rule. For example my GP hates the internet, and my Hematologist likes these forums where we share experiences. Its up to us to sift through it all.
All the best to you.
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  #8  
Old Wed Oct 8, 2014, 05:25 AM
Cheryl C Cheryl C is offline
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Definitely not true of this forum, Data. There are more wonderfully positive stories than negative in my view.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #9  
Old Wed Oct 8, 2014, 08:27 AM
Data Data is offline
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SKB007& Cheryl,
I totally agree with both of you. It is encouraging to read the good stories on this forum. When I was deciding how I wanted to be treated for prostate cancer I used another forum and got a tremendous amount of information from the folks on it. There were good reports and horror stories.

I am currently trying to decide where I want to go for my second opinion.

Good luck in your journeys!

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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