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Old Sun Sep 18, 2011, 07:24 PM
Carrie Carrie is offline
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Join Date: Sep 2011
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Question Stories of unexplained count drops around day 60?

My best friend was diagnosed with AML in March. She is 32. She received an marrow transplant (unrelated donor) on July 14. Since then, she has done relatively well. She is at home with her fiance, and has suffered no fevers, infections, or other major complications. A recent biopsy confirms 100% donor marrow in her system.

UNFORTUNATELY, her counts, which have been steadily improving since the transplant, have started dropping. Her doctors seem at a loss, and she is, of course, terrified. In searching online, I came across Ruth Cuadra's profile here, which says:

"I've heard a number of patients report drops in blood counts around Days 65-70, but my doctor didn't consider the drops normal. [. . .] Mysteriously, my counts recovered on their own over the next few weeks. There never was a good explanation for the dip. "

I'd really like to gather some positive stories of other patients experiencing this kind of drop, and went on recover from the dip, as Ruth did. I know every individual's journey is different, but I also know it would be comforting for my friend to hear about positive potential outcomes, as opposed to the worst-case scenarios she is--understandably--playing over and over again in her mind.

I should add that she is an oncology nurse, and engaged to an oncology resident. They have seen the hardest cases, and have little trouble imagining frightening scenarios for themselves. I hope perhaps someone here can provide an anecdote that might give them some more hope and comfort.

Thank you so much, and my best wishes to all of you fighting a marrow disease.

Carrie
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Old Mon Sep 19, 2011, 03:12 AM
Ruth Cuadra Ruth Cuadra is offline
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Hi, Carrie.

I admire you for looking for ways to support your friend and her fiancé during the most difficult part of the recovery from bone marrow transplant -- the first 100 days. Your hope hangs on every blood test and every feeling is judged on the basis of whether it presents progress toward the goal of a cure or setback from which there might be no recovery. For an oncology nurse and student, the strain must be all the greater.

As you have probably discovered here at Marrowforums, I did survive the worry of that early, unexplained dip in my counts. Soon I will celebrate the 13th anniversary of my transplant. My transplant experience, while seared in my memory, has also lost some of its sharp edges. One of the hardest things to do at the beginning (and 60-70 days out is just the beginning) is to be patient and let your body recover. If possible, try to have your friend focus on whether she feels better than a week ago or a month ago. I'm betting she does and that means that despite a dip in counts at this point, she is doing well and can expect to continue to improve. The trends are more important than the specifics of a given day's of blood counts.

Regards,
Ruth
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