We are moving ahead with Anadrol

[Wendy Beltrami]

Hello Friends,

We are just back from our Cleveland Clinic consult with Dr. Maciejewski.
Grant had his 7th BMA & B and we are now awaiting cytogenics. Prelim results were status quo. Empty marrow, no blasts. The plan (agreed upon by Dr. Maciejewski, Dr. Margolis from Ch Hosp of Wisc and Dr. Young at NIH is that Anadrol (anabolic steroid) is the best next choice for Grant.
We also decided a few weeks ago, after looking at his counts, that after 6 months, the herbs have not had any negative or positive effects that are apparent so he stopped taking them.
There was some discussion in Cleveland about switching from Exjade to Desferal for his iron overload but Grant is not in favor of that so for now, we will stick with the Exjade.
His liver enzymes will be monitored closely while on the Anadrol and we hope for minimal side effects.

Wendy B.
mom to Grant, age 16 1/2
dx 12/4/98 AA
ATG x 2, cyclo, mycophenolate, danazol, prograf, zenapax, acupuncture, herbs... pretty much tried it all!
Currently transfusion dependent on platelets and prbcs

[Neil Cuadra]

Originally Posted by Wendy Beltrami

There was some discussion in Cleveland about switching from Exjade to Desferal for his iron overload but Grant is not in favor of that so for now, we will stick with the Exjade.

Why? What were the tradeoffs, Wendy?

[Wendy Beltrami]

Hi Neil,

Ever since dx, Grant has had the most problems with platelets. Then the rbcs took a dive a few years ago. But all those years, his ANC was not a problem.

Then in November his ANC started to drop. I believe that this was a result of starting the Accutane for the skin condition he was battling. This dip happened about 4 weeks after starring the Accutane.

The discussion about whether or not to stick with Exjade came because Exjade is also known to cause a drop in ANC.

I really believe it was the Accutane and not the Exjade. He stopped the Accutane after taking it for 5 months and I am hoping now to see the ANC come back up. He has been off of it now since March 4th though and so far, the ANC is still looking pretty bad. It has gotten up to 1100 a few times, but is usually hovering around 400. Although Neupogen worked beautifully for him in the past, it didn't do much of anything this time so it didn't seem to be worth the other risks that come with it.

I don't think Grant's compliance with the desferal would be good and since his ferritin and iron levels are so high, that's not a chance we can take now. Of course we can't have the ANC low either, so as usual... we have a fancy balancing act going on.
It was hard enough to get him to be compliant with the Exjade... it is nasty stuff.

Wendy/mom to Grant age 16 1/2
dx 12/4/98 AA