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AA Aplastic anemia

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  #1  
Old Mon Jan 6, 2014, 04:48 PM
curlygirl curlygirl is offline
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New Dec 2013 AA Article by Dr. Neil Young, NIH

Dr. Neil Young at NIH published a new article in December 2013 titled "Current concepts in the pathophysiology and treatment of aplastic anemia." A full text version of the article is published by the American Society of Hematology here: http://asheducationbook.hematologyli...2013/1/76.full
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  #2  
Old Tue Jan 7, 2014, 09:47 AM
KMac KMac is offline
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Thanks for posting this link! It is always very interesting to read the latest from Dr. Young.

I'm sure curious to see the upcoming results of Dr. Townsley's ATG/CsA/Eltrombopag study for SAA that Dr. Young describes in this article. Does anyone know when those results are expected to be published?
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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  #3  
Old Tue Jan 7, 2014, 09:33 PM
NLJabbari NLJabbari is offline
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Thanks for sharing Curlygirl
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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  #4  
Old Wed Jan 8, 2014, 09:33 AM
curlygirl curlygirl is offline
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NLJabbari, You're welcome!

Kevin, I think this is the link to the NIH eltrombopag study that the article mentions, so it looks like DEC 2015. This trial is active but not recruiting new patients: http://www.clinicaltrials.gov/ct2/sh...ombopag&rank=5.

NIH has three other trials with eltrombopag going on that are still recruiting:

- One for newly diagnosed SAA patients that are getting ATG & Cyclosporine for the first time; they add eltrombopag for the treatment. Looks like this one ends in May 2015: http://www.clinicaltrials.gov/ct2/sh...ombopag&rank=3

- One for recently treated SAA patients that didn't respond within 6 months to immunosuppression with antithymocyte globulin, alemtuzumab or cyclophosphamide, where NIH treats them with just eltrombopag and not additional immunosuppression, ends March 2017: http://www.clinicaltrials.gov/ct2/sh...ombopag&rank=4

- One for people with Moderate Aplastic Anemia where NIH treats them with just eltrombopag, and not immunosuppression, ends DEC 2014. It looks like you could have had a prior treatment with ATG/cyclosporine but not within the 6 months prior to the clinical trial: http://www.clinicaltrials.gov/ct2/sh...ombopag&rank=1
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  #5  
Old Wed Jan 8, 2014, 12:49 PM
KMac KMac is offline
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Thanks Curlygirl! I really appreciate you posting those links. They were exactly what I was looking for.

...so looks like we still have a year or two before seeing the results.

I wonder if I'd be eligible for the trial for Moderate AA as you mention. I'd asked Dr. Townsley and she said as a rule, probably not, as partial responders (as I am, since my ANC is generally below 1000) can often do fine without further treatment, and any trial is risky.

Since I don't really get sick with my low ANC, for the time being I'm trying to taper my cyclosporine and other meds, as opposed to taking more meds, but it is good to know that promising new treatments like eltrombopag exist.
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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  #6  
Old Wed Jan 8, 2014, 05:23 PM
dfantle dfantle is offline
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Smile

Thank you Curlygirl
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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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  #7  
Old Thu Jan 30, 2014, 08:33 PM
Relentless Against SAA Relentless Against SAA is offline
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Thanks

Thank you for posting the web info for this article. The article is a really good resource and very helpful. I took a copy to our local hematologist- he had not read it until I took it to him.
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  #8  
Old Fri Jan 31, 2014, 09:31 AM
Sally C Sally C is offline
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I would like to add that NIH has extended the Eltrombopag clinical trials to MDS patients as well due to the success of the trial with their AA patients.
Anyone interested should read my posts regarding Promacta (Eltrombopag) and the almost miraculous success my husband has had with this drug.
After over 125 red/platelet transfusions, he has been transfusion independent for going on 3 years now after taking Promacta. He stopped taking Promacta when his platelet count reached 100,000. His platelets are still over 100,000, his RBC and WBC have remained normal. All three of his blood lines were affected. He is currently taking no medication for his MDS and is doing so well we tend to forget he has MDS.
If any questions please feel free to contact me - shcalvert3@aol.com.
God Bless,
Sally
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  #9  
Old Fri Jan 31, 2014, 09:41 AM
Marlene Marlene is offline
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That's awesome Sally.
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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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  #10  
Old Sat Apr 19, 2014, 10:08 PM
barbara a barbara a is offline
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Awesome

CURLYGIRL YOU ARE AWESOME!!! I am a member -I was a caregiver, my husband died in 2003 now I am a fullblown advocate for Vietnam Veterans and their families I am seeking specific "scientific studies and or quality health reports " that show a "likelihood or suggestion of the nexus (connection) between Agent orange exposure and AA/MDS" if you come across anything please send me a post
thanks
Barbara a
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  #11  
Old Wed Apr 23, 2014, 12:11 PM
curlygirl curlygirl is offline
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Barbara a,

Sorry, I haven't logged on in a while. I read ScienceDaily.com every few days. A lot of scientific discoveries involving the immune system are posted there. I saw this article recently so I wanted to log on and pass it on to you:

Gulf war illness not in veterans' heads but in their mitochondria
Date: March 27, 2014
Source: University of California, San Diego Health Sciences
Summary: Veterans of the 1990-91 Persian Gulf War who suffer from “Gulf War illness” have impaired function of mitochondria – the energy powerhouses of cells, researchers have demonstrated for the first time. The findings could help lead to new treatments benefitting affected individuals -- and to new ways of protecting servicepersons (and civilians) from similar problems in the future.

http://www.sciencedaily.com/releases...0327222210.htm
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