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Old Sat Oct 8, 2016, 07:59 PM
KMac KMac is offline
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Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
Hi Windhorse1,

I live up the hill from you in Nederland. I was treated for SAA with ATG/CsA in March 2012 at CBCI/PSL in Denver. I responded slowly but well. I am finally wrapping up my CsA taper. My most recent counts this week were Hgb 14.8, Plt 151, ANC 1907 - pretty much normal. I have my life back now, work full-time, exercise a lot, and generally feel pretty great. But it was a long, long and uncertain road. And the uncertainty remains. Some of my counts still rise and fall unexpectedly.

As to quality of life during treatment, wow does that ever vary from patient to patient. This is such a hard to understand disease, with such a wide variety of symptoms and outcomes. I got the serum sickness, probably from tapering my prednisone too rapidly, and that was uncomfortable. I also got iron overload from the 24 red blood cell transfusions I received, and was heavily chelated to remove the excess iron.

May I ask where you are being treated? I recommend CBCI highly in the Denver area, though there are other good places in the area I believe.

I would recommend keeping track of your transfusions, making sure you are tested for iron overload, ensuring your kidney function is monitored closely (a side effect of CsA is temporary kidney damage, that can become permanent), tracking your reticulocyte count to see if your body is responding to treatment by making new red blood, watching out for serum sickness, making sure that your CsA trough is tracked closely and correctly, making sure your PICC line is kept clean, obeying neutropenic precautions in the food you eat (these are all things CBCI would be on top of, and a hematologist well-versed with SAA treatment elsewhere would be on top of as well).

My greatest symptom was extreme fatigue from the severe anemia, plus feeling always like I had a bad cold (I assume from the severe neutropenia). Bruising and bleeding were also common with me from the low platelets. These symptoms went on for months, but slowly got better as my counts improved. I have been lucky to very slowly and haltingly improve my counts and feeling of good health year over year, for the past five years now. It is so wonderful to feel normal again.

Hang in there! I believe exercise also has really helped me get better, even when I was exhausted and very sick (perhaps it is most important to get up and keep moving then). Psychologically, using this time to reconnect with the people, things, activities you are most fond of - I believe that too is very important and helpful.

Something rare, strange, challenging, and not fully understood had happened to us. Though I would never have chosen it, I have learned a lot on this journey, and stand changed forever. SAA sure makes you appreciate good health and the energy to get up and do things!

I wish I could tell you what to expect. I was so frightened, but this once nearly-always fatal disease now has a greatly improved prognosis, and hematologists are getting better and better at treating it, despite all that is still unknown. Along those lines, you may want to look into the new drug Eltrombopag as a compliment to your treatment. NIH trials have shown great promise in this when combined with ATG & CsA.

Best of luck to you - keep as positive as you can and keep fighting. Feel free to let me know if you have any additional questions. Also AAMDS is a wonderful organization for information and support.

Kevin
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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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