Dropping counts

[Hayley's Dad]

A quick history of my daughters disease. Hayley was diagnosed with SAA in March of 2008. After receiving a round of horse ATG and cyclosporine untill March of 09 her numbers continued to rise. The past 2 months we have had a bit of a setback (at least in my mind) her counts have all dropped significantly. Her #'s were as follows.

May
Whites 12.8
Hg 13.1
Platelets 289
Neutrophils 8510


June
Whites 9.5
Hg 13.2
Platelets 211
ANC 4655

July
Whites 6.7
Hg 12.6
Platelets 203
ANC 2590

So after these numbers ... is there anyone who could give me any insight on weather or not she is headed for a relapse? Our docter was'nt concerned last month, but this is the second month in a row that her #'s have dropped and of course I am concerned. I have been following this site since her diagnosis and it has been extreemly helpful in our journey, I have never commented because Hayley has been doing so well but with this news I could use some advice. Thanks

[Steven]

I'm not nearly as informed as other members of this forum, but I think one of the most important indicators is how your daughter feels physically. If she started feeling worse in the past 2 months (e.g. more fatigued, nauseous), it couldn't hurt to be even more on top of the doctor.

But her WBC, HGB and platelets sound like they're in a pretty normal range. If Hayley feels ok, then it might be best to follow the doctor's lead, and try not to worry TOO much yet (and continue to see the doctor and get CBC's regularly of course).

[Hawaii Bill]

Aloha,

If I was in your shoes, I'd be worried too, but it is impossible to tell what your doctor is thinking and what he knows. Her counts still look good right now, but the last thing you want is a relapse.

The first thing that comes to my mind is the cyclosporine taper. Much of the current thinking seems to be that a very slow taper is best, something like 10% per month reduction in dosage, to avoid relapse. This is assuming no toxicity.

In my own case, we tapered the CsA very quickly, and I am convinced it led to my own relapse after a really good response to the treatment with horse ATG and CsA.

hth

[evansmom]

Hi there.

Those are great counts over all, but there is no denying the trend here. Am I to assume your daughter is now off cyclosporine? If so, a decision may need to be made in the next month or two to get her back on it.

At this point, if it were my child, I would want labs every week rather than waiting another month to get a good grasp of the trend and react accordingly if the counts continue to drop. I've read many good results coming out of restarting cyclosporin without repeating ATG. But we musn't jump too far ahead either.

It's also very possible that a few months ago when your daughter's wbc and anc were high, she was fighting an infection of some sort. Platelets will rise as a normal response to infection. Perhaps once the infection cleared, the whites and platelets settled back down some.

Just keep doing what your doing...watch closely, ask questions, advocate and push for action when/if necessary.

[Hayley's Dad]

Hayley has been off cyclosporine since april 09. As far as her counts go this is the first drop in #s since they began going up in July of 08 they didn't even see saw at all. This is why we are concerned. Thanks for all the advice.