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  #1  
Old Wed Mar 21, 2007, 11:41 AM
Robi1Knobi Robi1Knobi is offline
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Location: Austin, Texas USA
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Linda R's Aplastic Anemia- newly diagnosed

Hi, my name is Linda and I live in North Austin, Texas in a subdivision called Lago Vista. I am 38 years old, happily married for 10 years, and have a 6 year old daughter. I think this all began when I was pregnant with her. When I went in to have her, they told me my hemoglobin was 6 and platelets 60, 000, so I had a c-section under general anesthesia. I am a NICU nurse, so I know enough to scare me! After my daughter was born, they gave me Epogen shots, but they didn't work, so I was followed by different hematologists for 6 years and had 3 biopsy's, until I got diagnosed Feb 5 2007 at Medical City Dallas by Dr. Vikas Bhushan. I'm wondering if I've had this disease all these years, and just now someone knew what they were looking at, so I finally got diagnosed. I've been really bummed out at times, sometimes cry on the way home from work, but usually have a positive outlook, because I know that's the only way to get better. Dr. Bhushan said he thinks I have moderately severe idiopathic aplastic anemia, and will need ATG, cyclosporine, and prednisone first, then a stem cell transplant later. I'm an only child, and half Japanese, half Irish American, so finding a donor match will be difficult. My insurance company (Humana) through my job (HCA) sucks, they won't pay for a donor search or match, so I'm going to NIH April 3, to see Dr. Neal Young to try to get onto a study. Lately, I've had shortness of breath, and have missed work because of it. I just want to feel like my old self again. I would love to talk with anyone else who has this disease, who might be able to share some words of wisdom. Noone else understands (or wants to hear) about what I'm going through, they all just say, "why don't you take some iron pills or B12), and I can't get upset, they are just trying to help. Anyone?
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  #2  
Old Wed Mar 21, 2007, 06:35 PM
Barbara2007 Barbara2007 is offline
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Linda- don't give up! Dr. Young at NIH is fantastic! I was told I was at my treatment limit locally and I was accepted into a clinical study of Campath. The entire staff there is upbeat,professional and just darn happy! But they understand AA and throughout my treatment there they handled every blip in my treatment. Having low hemoglobin,etc can sure make you tired but you are working and a mom-go easy on yourself! If you want to E-mail me-feel free any time-bdrenth@indy.rr.com. This site has helped me so much and has reminded me that we keep on keeping on! It's ok to have sad days-you've been given alot to absorb but keep asking questions-keep a medical journal-and know there are folks out here who care. Barbara
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  #3  
Old Wed Mar 21, 2007, 10:07 PM
Robi1Knobi Robi1Knobi is offline
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Thank you Barbara!

Thank you so much, I was really down today, but your caring helped me feel better! Its so weird when your body fails you...
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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  #4  
Old Thu Mar 22, 2007, 02:11 PM
Lisa V Lisa V is offline
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Linda, why did it take them so long to diagnose you? Has your Hgb been that low all this time, or did it come up again for a while? It's pretty hard to function normally at 6. They never transfused you?

You're right that with your ancestry a donor search will be more difficult, but not impossible. Hopefully you'll never have to go the transplant route, but if you do, I would suggest contacting one of the Hawaii newspapers and telling them your story. We have a heavily Asian and mixed-race population base and Hawaii people will respond to a public donor drive for someone of similar ethnicity, even if they're not from here, because we all know how difficult it is. I've seen it happen before, so just keep that in the back of your mind as an option.

Hopefully you won't need it. With no siblings, ATG will undoubtedly be the first line of treatment. What are your counts now? Generally you have to be at severe levels in at least 2 out of the 3 lines before they'll do it.

My husband's gotten the "you just need more iron" remarks too, and it's frustrating. If they really don't get it, I'll say something like "it's not that kind of anemia, it's more like leukemia." Not 100% accurate, but it sure shuts 'em up!
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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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  #5  
Old Thu Mar 22, 2007, 03:35 PM
Ruth Cuadra Ruth Cuadra is offline
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Linda,

I'm with Lisa in hoping that you'll never have to go the transplant route. You may be worrying your self unnecessarily by thinking about how you would find a donor and even pay for the search. The success rates for ATG treatment are so good that it's likely you'd never face a transplant.

It's terrific that you'll be seeing Dr. Young at NIH. I have to believe that any doctor would want you to have ATG before you consider clinical trials like the one for Campath. Let us know how that visit goes.

Regards,
Ruth Cuadra
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #6  
Old Mon Mar 26, 2007, 11:25 AM
Robi1Knobi Robi1Knobi is offline
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short of breath today

Thanks for all getting in touch with me. Everyone has given me some great advice, I'm going to buy a mini recorder sometime this week, before I leave for NIH on Sunday. I'm going to try to work three 12 hour days this week, I hope I make it! My hgb is 9.8, platelets 86 K, but I've been really short of breath the last couple of days. I wish I were born a man, so I'd only have to go to work and come home ), not worry about all the house stuff. I'm only saying this because all of you wonderful women that have responded to me, know what I'm talking about! That was good info about a possible Hawaiian donor, I'd love an excuse to go there if I need a transplant. Do any of ya'll use an air filter/cleaner, and if so, which one? Did it help your breathing when you were at home? There are so many on the market, I don't know which to buy..
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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  #7  
Old Tue Mar 27, 2007, 02:56 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Robi1Knobi View Post
I'm going to buy a mini recorder sometime this week, before I leave for NIH on Sunday.
I suggest to people that they take along a friend or relative, to take notes for them, when they go to a doctor's appointment. Having a mini recorder works too!
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  #8  
Old Tue Mar 27, 2007, 06:42 AM
fibogann fibogann is offline
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Air Filter

Quote:
Originally Posted by Robi1Knobi View Post
Thanks for all getting in touch with me. Everyone has given me some great advice, I'm going to buy a mini recorder sometime this week, before I leave for NIH on Sunday. I'm going to try to work three 12 hour days this week, I hope I make it! My hgb is 9.8, platelets 86 K, but I've been really short of breath the last couple of days. I wish I were born a man, so I'd only have to go to work and come home ), not worry about all the house stuff. I'm only saying this because all of you wonderful women that have responded to me, know what I'm talking about! That was good info about a possible Hawaiian donor, I'd love an excuse to go there if I need a transplant. Do any of ya'll use an air filter/cleaner, and if so, which one? Did it help your breathing when you were at home? There are so many on the market, I don't know which to buy..
Hi Linda,

Yes, the air filter GREATLY assisted in ensuring good clean air for my son especially after his ATG. We used a thereupatic air filter with an ionizer suitable for one room. I personally felt the difference in the air with the air filter, and it was a tip from Andrea, one of our forum members as well. Since it was portable, my son could take it around with him whenever he wanted to move around the house:-)

To this day, after more than 5 years past his episode of AA and his recovery,we have replaced the first air filter with a newer one- same brand, same model because we simply adore that filter:-)
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Peter Lim, Dad to Stan, age 17 at time of dx Feb 2002VSAA; tx. ATG, cyclosporine, predisone; alternative herbal supplm & shark liver oil, off all meds 5/2002 normal blood counts. Only on shark liver oil.
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  #9  
Old Tue Apr 17, 2007, 04:55 PM
Robi1Knobi Robi1Knobi is offline
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went to NIH

I went to NIH and Dr. Neil Young said that I have MILD aplastic anemia, not moderate-severe like the docs here told me. I don't need any treatment right now, and am so grateful that I went to the best place for a 3rd opinion. He said its possible that I have had it since before my daughter was born, and that my previous docs didn't know what they were looking at! I'll be getting monthly cbc's and yearly bone marrow biopsies, as long as I don't get worse. I just worked three 12 hour shifts in a row, and have been having shortness of breath all day today at work, so I won't be working 3 days in a row anymore!! Thanks for all ya'lls support, and if anyone out there also has been living with mild aplastic anemia, I'd love to hear from you! Also, anyone else that wants to get in touch. Thanks again, Linda
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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  #10  
Old Fri Apr 20, 2007, 11:47 AM
Marlene Marlene is offline
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Linda,

Have you tried procrit to see if it can bring up your red cells some? Procrit does help some people with AA. It's worth trying. It worked on my husband for about two years and others have had success with it.

Another avenue for you to explore if your AA approaches the "severe" stage is High Dose Cytoxan at Johns Hopkins. In fact, I would reccommend you look into it now so that if you need to start treatment, you will have done the research ahead of time. I think your local Doc is premature in telling you that you will eventually need a BMT. You may want to check out this site also. There are others with moderate aa that have posted there.

http://www.aplasticcentral.com/

Marlene
__________________
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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  #11  
Old Mon Apr 23, 2007, 11:59 AM
Robi1Knobi Robi1Knobi is offline
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Thanks Marlene

Thanks so much for the advice. I have just gone to part time work to try to get my body healthier. Its time to take care of it, instead of abusing it!! If my disease ever progresses worse, I'll take your advice and go to John's Hopkins if its a government agency. Do you know if it is?
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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  #12  
Old Mon Apr 23, 2007, 12:29 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Robi1Knobi View Post
If my disease ever progresses worse, I'll take your advice and go to John's Hopkins if its a government agency. Do you know if it is?
Linda,

The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital in Baltimore, Maryland is part of the Johns Hopkins University School of Medicine, so it is not a government agency.

It is recognized by the National Cancer Institute:
"NCI-designated cancer centers are characterized by scientific excellence and the capability to integrate a diversity of research approaches to focus on the problem of cancer".
See list of NCI-designated cancer centers.
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