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Old Fri Sep 4, 2009, 12:05 PM
Gloria J Gloria J is offline
Join Date: Sep 2009
Location: New Jersey
Posts: 53
'Good things come to she who waits'

‘Good things come to she who waits’ It’s been 3 months now since my last transfusion of PRBC, and 17 months since ATG treatment for SAA. At my one-year check up, I was told I could be re-treated, or ‘wait and see’. I voted for the latter, and am very happy now that I did. My Hgb is in the 9s, platelets have been between 20 and 35 since Dec 08, and my CBC (finally!) no longer says neutropenic. This, from the lady who walked into the ER in June 2007 with counts ’that do not support life’ (WBC 2.0, Hgb 2.9, Plt 8)

My story in a nutshell – a coincidental bout with Lyme disease (June 07) brought a dx of ‘aplastic crisis’ which did not resolve. Prednisone (July 07) gave me 20 pounds, much misery, and no improvement. Rituxan (Aug07) had no side effects, but no better results. A long winter, with decreasing counts, and many txs. Off to NIH for evaluation for SAA.

April 2008 – Successful ATG treatment with the Best Medical Team Anywhere along with CSA, back home after 17 days (including 5 extra days for IV fluids to counter hemolysis from platelet tx reaction – another story for another day).

Oct 08 – 6 month checkup with my new best friends at NIH – averaging 24 days between PRBC tx, platelets in the teens, ANC bouncing between .8 and 1.3 – okay, but don’t break out the champagne yet.

Apr 09 – 12 month checkup with the angels at NIH – averaging 8 weeks between PRBC tx, platelets in the 20s and 30s, WBC finally staying over 2 – considered a ‘success’ for the clinical trial, but what to do now?? Dr. Neal Young tells me ‘Don’t let this disease run your life’ – I take those words to heart, and decide to let the summer go by before deciding on ATG re-treatment.

Sep 3 09 – 3 months since last tx, platelets in 30s, ANC between 1.4 and 2.3 – all numbers I can live with, and I do.

I write this because I have found bits of me in all of your stories here for the last two years, and want you all to know that you touch my heart, and encourage me, and you need to believe that life does get better.
Gloria, early 50s, dx SAA Summer 2007, Pred July 07, Rituxan Aug 07, dx PNH Feb 2008, ATG Apr 08, began Soliris 5/31/11
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Old Fri Sep 4, 2009, 01:34 PM
triumphe64 triumphe64 is offline
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 441
This is a great story and very well written. Stay well.
Dallas, Texas - Age 77 - 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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Old Sun Sep 6, 2009, 12:51 PM
Ruth Cuadra Ruth Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 612
Dear Gloria,

It's always nice to hear that someone has benefitted from Marrowforums. Since every patient is different, it helps everyone to learn how others have dealt with their bone marrow diseases. Thank you for sharing your story.

Ruth Cuadra
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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Old Sun Sep 6, 2009, 02:47 PM
Lisa V Lisa V is offline
Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
Thanks for telling your story, Gloria. It's so important for AA newbies to hear that just because ATG doesn't appear to be showing immediate and dramatic results, doesn't mean it hasn't been effective. It's a long, slow process, and as long as the general trend is in the right direction, waiting may be better than rushing to re-treat.

Hopefully your counts will continue to inch up, but in the meantime it sounds like Dr. Young gave you some very good advise. You CAN have a life with lower than normal counts, you just have to use good sense and be aware of your limits.

What I want to know is: with Hgb at 2.9, how were you able to walk into an ER or anywhere else? That's the lowest I've heard anyone report and still be standing!
-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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Old Mon Sep 7, 2009, 06:22 PM
Gloria J Gloria J is offline
Join Date: Sep 2009
Location: New Jersey
Posts: 53
Hi Lisa,
Thanks for the encouragement. I certainly don't fit the ATG profile of improvement within weeks of treatment. My response has been much slower, but this week marks 14 weeks since a transfusion.

As for the 2.9 Hgb, it was actually 3.7 the day before. I had called my Doc Monday morning, complaining of fatigue and generally feeling lousy, not sure if it was the Lyme disease or not. They drew blood, he called the next day, and said I must go immediately to the ER for a transfusion. My son drove me there, I told him to drop me off and go park the car. True story - I did walk in! (and immediately sat down at the reception desk).

The cardiologist who was called in later told me that my heart was very strong; and due to a long-standing habit of cardio exercise, I was able to function with such low counts.

I have learned my limits, I can function pretty well down to about 7.0. My hematologist and I have a deal - as long my Hgb is over 8, I go in for a CBC every two weeks, under 8 - I go once a week. Works for me! Tomorrow is my next CBC, keep a good thought for me, thanks!
Gloria, early 50s, dx SAA Summer 2007, Pred July 07, Rituxan Aug 07, dx PNH Feb 2008, ATG Apr 08, began Soliris 5/31/11
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Old Tue Sep 8, 2009, 05:44 PM
ann ann is offline
Join Date: Aug 2009
Location: Burleson, TX
Posts: 77
Talking good things

I love to read good news. May the rest of your story be as good.

My husband received good news today. His RBC was 9.8 and the platelet count was 99. The oncologist was thrilled. She gave him a shot of Procrit today and he goes back next Monday to start his third round of Vidaza. If his heart and lungs would just do as well, we would be "in high cotton". He feels so good. It has been a while since we went a week without a transfusion and here, we have gone since Sept. 21, when he last had platelets and blood.
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