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AA Aplastic anemia

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  #1  
Old Mon Mar 27, 2017, 09:11 AM
Margaret W Margaret W is offline
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Location: Michigan
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AA evolved

I've had aplastic anemia for over 44 years, documented, and probably for my whole life (I'm over 60). For the past couple of years, I haven't felt at all well, even though for years after my hATG in 1987 I felt pretty good. I carried on with my family, friends and with my (very satisfying) career.

I had a bone marrow biopsy on March 15 and after years of having BM cellularity of 0-2%, all of a sudden, I'm at 75% cellularity. I was told "nobody has plain old aplastic anemia for 60+ years." My granulocytes look strange and they're "clonal," meaning one of them went wild and began reproducing itself.

They're calling it "T-cell large granulocyte lymphocytic leukemia." I was told on Friday that it's not curable, but it is treatable. I wonder how treatable mine is, though, considering I have severe cirrhosis from hepatitis C that was contracted during a blood transfusion while I was having hATG (before they were screening blood for the virus). I'm seen at the University of Michigan.

I'm concerned, but I'm not frightened. If anyone else knows about this type of leukemia, please let me know, okay? I'm going to call down to the University of Virginia as I understand there are trials, studies, protocols, etc. going on. I don't know if I have the energy reserves to make it to VA, but I'd consider it.

Thank you.
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Margaret, SAA patient diagnosed 1972; ATG 1987; moderate AA for years; hep. C from transfusion 1987; now SAA is back.
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  #2  
Old Mon Mar 27, 2017, 05:57 PM
triumphe64 triumphe64 is offline
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U of Virginia is the place to be.
If you are on Facebook there is a group for this.

https://www.facebook.com/groups/LGLL...NSupportGroup/
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since 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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  #3  
Old Mon Mar 27, 2017, 09:40 PM
Margaret W Margaret W is offline
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Thank you, triumphe64. I will be in contact with Dr. Thomas P. Loughran at UVA after a few administrative details are taken care of. From talking to a few people there today, I gather that it's a bit too soon to make any appointments yet. My slides are still being sent around, etc. I should wait awhile, I decided, and make sure that everything can be forwarded to Dr. Loughran from the places where it's supposed to be forwarded from. I'm willing to wait.

I was on the Facebook page over the weekend and it looks somewhat helpful as to information that's provided there.

Yet another battle...

Margaret
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Margaret, SAA patient diagnosed 1972; ATG 1987; moderate AA for years; hep. C from transfusion 1987; now SAA is back.
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  #4  
Old Mon Mar 27, 2017, 10:18 PM
triumphe64 triumphe64 is offline
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Dr. L. is the expert at this condition.
Make sure you become part of his registry.
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since 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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  #5  
Old Wed Mar 29, 2017, 09:09 PM
Margaret W Margaret W is offline
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Yes, Dr. Loughran's medical assistant mentioned the registry to me and as soon as my records are at a point of assembly and review to where I can join the registry, I'm going to do it.

Thank you so much!



Margaret
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Margaret, SAA patient diagnosed 1972; ATG 1987; moderate AA for years; hep. C from transfusion 1987; now SAA is back.
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  #6  
Old Wed Apr 19, 2017, 01:37 PM
Margaret W Margaret W is offline
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Okay... I was diagnosed on March 15 with T-cell LGL leukemia. Marrow cellularity went from 5% in Jan., 2016 to 75% in March, 2017. I am feeling pretty "punk." I have nosebleeds every day and the bone marrow biopsy site bled for a full 4 weeks before it finally stopped!

I had an appointment with Dr. Bixby on March 24 and he sort of said, "This is no big deal." The LGLL was diagnosed by means of a bone marrow biopsy at Henry Ford Hospital, to which I will not return.

I was scheduled for a revisit with Dr. Bixby on June 28, but - as he does with so many appointments - he cancelled that and pushed it back into July.

Now, I am not comfortable with any of this. I really don't have family or friends who wish to discuss it at all except to tell me I need to take some Vitamin K or iron pills...

Any thoughts? Thank you.

Margaret
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Margaret, SAA patient diagnosed 1972; ATG 1987; moderate AA for years; hep. C from transfusion 1987; now SAA is back.
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  #7  
Old Thu Apr 20, 2017, 04:02 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by Margaret W View Post
Okay... I was diagnosed on March 15 with T-cell LGL leukemia. Marrow cellularity went from 5% in Jan., 2016 to 75% in March, 2017. I am feeling pretty "punk." I have nosebleeds every day and the bone marrow biopsy site bled for a full 4 weeks before it finally stopped!

I had an appointment with Dr. Bixby on March 24 and he sort of said, "This is no big deal." The LGLL was diagnosed by means of a bone marrow biopsy at Henry Ford Hospital, to which I will not return.

I was scheduled for a revisit with Dr. Bixby on June 28, but - as he does with so many appointments - he cancelled that and pushed it back into July.

Now, I am not comfortable with any of this. I really don't have family or friends who wish to discuss it at all except to tell me I need to take some Vitamin K or iron pills...

Any thoughts? Thank you.

Margaret
Margaret,
If you are on Facebook, you might want to join this group:

https://www.facebook.com/groups/LGLL...aSupportGroup/
__________________
Dallas, Texas - Age 75 - Pure Red Cell Aplasia since 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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