New Treatment question

[Kate]

I haven't been to this site in quite awhile. My great nephew, Gregg has Idiopathic Aplastic Anemia. Last Friday he went to Strong Memorial to have yet another Spinal Tap procedure. His doctor was to do a 'cross/match', in the attempt to find a suitable marrow donor. But it seems that after consulting with other doctors, they have decided to start Gregg on a new treatment.
My question is this: Has anyone on this Forum heard of the drug for this treatment....Daclizumab (Zenapax)???
Gregg is to undergo this treatment every 2 weeks for 12 weeks. His doctors have said that it 'could' put him into remission. Of course we are all in the hopes that it will do just that! But I told his mother that I would ask at this Forum to find out if others have tried this particular treatment.
Hoping to hear back from someone on this.
Thanks so much,
Kate

[Birgitta-A]

Hi Katy,
You know Daclizumab is not so new - I can't find any new results with all the supportive therapy patients get today so I will only send info about the drug. There are several studies recruiting patients so the drug is considered promising.
http://www.aamds.org/aplastic/glossary_terms.php?id=12
Kind regards
Birgitta-A

[Marlene]

Hi Kate,

You can look at this link. Laura did this drug at NIH. You can read her experience here:
http://aplasticcentral.com/test/toas...fid=2&tid=1239

The docs need to give you current stats on the drugs efficacy to date. They should be able to tell you to date, how many responded, how many are in full remission, how many are in partial remission and for how long.

Marlene

[Lisa V]

Kate, here's another link to a thread from this forum:
http://forums.marrowforums.org/showthread.php?t=104

The Laura who responded is the same Laura from Marlene's Aplastic Central link. I don't know if Wendy posted another follow-up to this, but I know her son Grant did not respond to Daclizumab. On the plus side, she said he had no side effects whatsoever, unlike his experience with ATG.

It doesn't sound like this treatment has the rate of success that ATG has, but for a non-responder who is not a good transplant candidate, it can offer some hope of at least some improvement in counts. Laura's temporary partial response is the best I've heard from anybody on the forums, however. I can't remember if Mark (from first thread) eventually tried it or not, but in the interests of full disclosure it should be pointed out that all 3 of these people (Laura, Grant and Mark) ended up going to transplant.

[Laura]

I am the Laura they are talking about. If you have any questions feel free to email me, post on here, private message.

Laura