danazol and zenapax (daclizumab)

[Wendy Beltrami]

Hi-
Just wondering who out there has tried danazol (androgen therapy- male hormones) and who has tried zenapax (aka daclizumab, another immunosuppressant).
I would love to hear how they worked for you and what the side effects were.

Wendy/mom to Grant
age 15
dx 12/4/98

[Laura]

Hi Wendy,
I have done Dacluzimab twice and Rituxan once. If you want to see my website regarding my history with all three trials please send me your email.
Laura

[Wendy Beltrami]

Hi All,
I am double posting this on Aplastic Central also
I haven't been reading/posting much lately so I thought I'd check in.

My son Grant who was dx with AA at age 7 about eight and a half years ago has been on a pretty steady decline the past few months. He went the first 7 years without transfusions, after having a response from horse ATG. Never hit all normal counts, but he was able to manage with low counts. Platelets were his main problem. ANC was usually always above 1000 and hgb was low but decent.

He has been on cyclosporine most of the past 8 years. Near the end of 2005, we tried to add mycophenolate in an effort to improve counts and find an alternative to cyclosporine that was easier on kidneys. It was disasterous- all counts lowered. That was the beginning of his decline. A second round of ATG (rabbit this time)was not successful. He has been transfusion dependent ever since on both plts and prbcs. ANC still fairly decent until Jan of this year when it also began to decline.

We consulted with Dr. Margolis and also Dr. Maciejewski (Cleveland Clinic). Neither were thrilled with the only donor Grant has available which is a 9/10 with a pretty significant mismatch at A.

Dr. Maciejewski recommended a series of treatments for us to try before resorting to that risky transplant. The first one... danazol (male androgen therapy) seemed to improve his retic but not much else. We increased the dose and his plt transfusions became more frequent. That really doesn't make sense medically, but we stopped the danazol to see if there was a connection. At the same time, we moved to the next treatment on the list which was...
zenapax/daclizumab infusion. This is a "passive chemo" monoclonal antibody. For Grant it was a breeze. Absolutely no side effect whatsoever, it may as well have been saline. We are cautiously optimistic because his counts all SLIGHTLY improved within 1 week. Second infusion will be either Fri or Sat this week. ANC is climbing back up again, and plt and rbc transfusion was avoided for this week.

Through all this, we have encountered the worst of the worst in dealing with the politics of health care. I will bite my tongue and not slander particular institutions and/or physicians online but suffice to say... we have witnessed "pissing contests" among doctors at prominent institutions and it is appalling to realize that often what is best for the patient doesn't always happen unless you, as a parent and advocate for your child refuses to accept NO for an answer.

However, I do want to give praise where praise is due- Dr. David Margolis at Children's Hospital of Wisconsin and Dr. Jarek Maciejewski at Cleveland Clinic are the BEST! Like balm for my soul.

I'll keep you posted... in the mean time- if your doc suggests zenapax/daclizumab- I encourage you to give it a try.

Wendy/mom to Grant- age 15 1/2