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AA Aplastic anemia

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  #1  
Old Wed Mar 28, 2012, 10:04 PM
misscakes misscakes is offline
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Talking my counts are up!

i havent taken the cyclosporine in 2 weeks and this week my counts are the highest they've been in a year and a half! not getting too excited, i know these things fluctuate. but you have to celebrate the little things too my platelets are up to 54!!
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Kimberly; AA patient; diagnosed 10/11; ATG 01/12 with cyclosporine
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  #2  
Old Thu Mar 29, 2012, 01:36 AM
mausmish mausmish is offline
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Great news! Yes, it is important to celebrate the small victories, too.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #3  
Old Thu Mar 29, 2012, 07:32 AM
Lori Patrick Lori Patrick is offline
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Kimberly, Congratulations! Good "little things" lead to more good things! Blessings, Lori
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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  #4  
Old Thu Mar 29, 2012, 12:31 PM
mscrzy1 mscrzy1 is offline
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Congrats! Yes, you should celebrate all the little things!
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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  #5  
Old Thu Mar 29, 2012, 05:31 PM
Marlene Marlene is offline
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Great news!!!!! A little celebration is in order.
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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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  #6  
Old Thu Mar 29, 2012, 05:59 PM
julestheo julestheo is offline
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Smile

Great News! Every positive is to be celebrated!!
Keep going and keeping positive
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  #7  
Old Sat Mar 31, 2012, 02:32 PM
Snuuze Snuuze is offline
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Wow! That's tremendous to have such results so soon! I had ATG last May, am still on cyclosporine and other stuff, and just in the past couple of months have things begun to turn the corner.
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Sue, age 72; Dx 6/2010 MDS Int-2. Revlimid unsuccessful, began Aranesp 10/2010; additionally Dx PNH 2/2011, Soliris added 3/2011. ATG 5/2011, Cyclosporine 5/2011. Nplate 10/2011 to 10/2012 . Exjade began 12/2013 due to high ferritin level, discontinued 3/2014 because of increase in creatinine.
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  #8  
Old Sun Apr 1, 2012, 08:45 AM
Gosia.P Gosia.P is offline
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Congrats!!! Way to go... And yes..We must CELEBRATE every little victory
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Gosia/ 47; SAA 04/2006; 1 round of ATG 2006;in remission until 01/2012. ...PNH @2%, chrom 13 partial del; Second course of ATG 2/27/2012 on cyclosporine, tapering down Prednisone/ neuropathic pain syndrome??? ... Hoping for the best!!!!
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  #9  
Old Sun Apr 1, 2012, 02:00 PM
dfantle dfantle is offline
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Congratulations! though I'm surprised you're off cyclosporine so quickly. I always heard that AA patients should be on this for a minimum of 6 months following the ATG. Is your Dr following a different protocol? I'm curious because I just received my Horse ATG last week (last day/day 4 was yesterday) and have been told I'll be taking the cyclosporine for at least 6 months. My brand is Gengraf. Sometimes I'm getting a bit of a headache with it. No other symptoms yet, but it just my 5th day on it.

Sent from my cell phone
Best, Dena
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #10  
Old Sun Apr 1, 2012, 06:14 PM
Lisa V Lisa V is offline
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I'm surprised you are off it so soon too. Did you do a slow taper? The increased counts are great news, just be sure to keep a close eye on them during this crucial time.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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  #11  
Old Mon Apr 2, 2012, 01:51 PM
misscakes misscakes is offline
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Thanks everyone!

My doctor told me I would be on the cyclosporine for six months but couldnt tell me why I supposed to take it. The side effects were making my quality of life horrible so I just woke up one morning and said the heck with it and havent taken them since. While I was on it my numbers stayed in the toilet and now two weeks without it they've jumped so I'm gonna continue to not take it.
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Kimberly; AA patient; diagnosed 10/11; ATG 01/12 with cyclosporine
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  #12  
Old Mon Apr 2, 2012, 02:47 PM
Karenish Karenish is offline
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Be very very careful stopping meds before your marrow is ready. The cyclosporine puts those naughty T cells to sleep if any are left after the ATG, to stop taking these meds you are potentially letting them wake up to wreak more havoc on your marrow before it has had time to re boot itself. Your doc should have explained this to you! I have been on cyclo for a year now, its not a walk in the park, a few tremors, cramps, high bp, overactive gum growth, but my counts are improving slowly. I will not stop taking them until doc says, and then as per protocol I think it will be what they call a slow taper.
Please be careful xxxx
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  #13  
Old Mon Apr 2, 2012, 05:07 PM
Lisa V Lisa V is offline
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Uh oh, does your doctor know you've stopped cold turkey? I agree with Karenish, not a good idea. I'm sure you feel better and may even be seeing a little bump in your counts for the moment, but it could come around to bite you in the backside down the road. I know this is not what you want to hear, but I've seen it happen too many times with others, and they end up paying dearly for it. ALWAYS include your doctor in any treatment decisions!
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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  #14  
Old Mon Apr 2, 2012, 05:39 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by misscakes View Post
My doctor told me I would be on the cyclosporine for six months but couldnt tell me why I supposed to take it. The side effects were making my quality of life horrible so I just woke up one morning and said the heck with it and havent taken them since. While I was on it my numbers stayed in the toilet and now two weeks without it they've jumped so I'm gonna continue to not take it.
What's worse for your quality of life, AA or cyclosporine side effects?
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #15  
Old Tue Apr 3, 2012, 11:16 AM
misscakes misscakes is offline
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yes, my doctor does know.

and as far as what's worse, i never would've known i had aa if it werent for routine testing during my pregnancy.
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Kimberly; AA patient; diagnosed 10/11; ATG 01/12 with cyclosporine
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  #16  
Old Tue Apr 3, 2012, 03:32 PM
Karenish Karenish is offline
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What concerns me misscakes is that your doctor was unable to tell you why you had to take the cyclosporine...if you do an internet search you will see that it is the treatment protocol. However, maybe, you had AA because of the pregnancy and the protocol is slightly different? You could be very lucky and it was just one of those things....it happens.....some people get it once, it goes and never comes back....for some it can come back many years later.....for some it comes back sooner. But I do know that you are less likely to relapse quickly if you are on the cyclosporine. I agree its a poo bag of a drug, but like a previous poster has said...AA or side affects from drug.....for me no brainer, the first is life threatening the other is actually keeping me alive.
Just be very very sure you have done the right thing and I truly truly hope that your counts do indeed continue to soar and that you go into long term remission....that is what we all wish for. good luck xx
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  #17  
Old Fri Apr 13, 2012, 09:05 AM
misscakes misscakes is offline
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another check up yesterday...

and my counts are continuing to go up! platelets are at 56! hb is 10.3! seems like i'm starting a slow climb
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Kimberly; AA patient; diagnosed 10/11; ATG 01/12 with cyclosporine
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  #18  
Old Fri Apr 13, 2012, 11:35 PM
dfantle dfantle is offline
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That's wonderful news.

Best
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #19  
Old Tue Apr 17, 2012, 10:55 AM
glitterandlace glitterandlace is offline
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Quote:
Originally Posted by triumphe64 View Post
What's worse for your quality of life, AA or cyclosporine side effects?
Does she have to pick? I say it's about a tie.
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  #20  
Old Tue Apr 17, 2012, 10:57 AM
glitterandlace glitterandlace is offline
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Originally Posted by misscakes View Post
and my counts are continuing to go up! platelets are at 56! hb is 10.3! seems like i'm starting a slow climb
I hear some women get AA temporarily during pregnancy. Congrats, wish the best for you. =-)
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  #21  
Old Wed Apr 18, 2012, 01:21 PM
triumphe64 triumphe64 is offline
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Originally Posted by glitterandlace View Post
Does she have to pick? I say it's about a tie.
I hope that you registered for the AAMDS patient conference in Los Angeles this week Saturday. You would find it helpful.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #22  
Old Tue Jun 19, 2012, 12:52 PM
JWT JWT is offline
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Question How long for counts to come up after ATG & Cyclospoine treatment for AA

I was recently treated with ATG and am taking Cyclosporine for AA and am wondering how long it typically takes to see increased blood & platelet counts with this type of treatment. It seems that I am being transfused with either platelets or blood on a weekly basis due to low counts.
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  #23  
Old Tue Jun 19, 2012, 04:25 PM
Karenish Karenish is offline
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The general consensus is that your blood counts should start to return to normal around month 6, however, mine did not, so consultant did another biopsy and saw that the marrow looked as tho it was improving but very slightly, then in month 10 things took a turn for the better and counts started to climb. Now currently at a level which is comfortable and I am transfusion free....its been 16 months and I have still a way to go. We are exploring whether a second dose would improve, or we carry on the wait and see road.
What I would say is tho, try not to get obsessed with your counts, even if you were 100% healthy they would fluctuate on a daily basis - we just notice it more because they are low. Plates drop when you have an infection - try to be patient. Best of luck xx
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