Re: Clinical trial experience with Estybon at NIH

[Guest guest]

Can you please share the NCI number for the trial?

I searched the http://clinicaltrials.gov website

but couldn't find it.

Which part of NIH is doing this trial and which docs?

NCI?

Thanks

Lynn

> Enrolled in clinical trial at NIH using Estybon 72 hour

> infusions. This is a phase 1 study to determine dosage. They

> raised the dosage given to previously treated patients this

> time around. None of the other participants at the lower

> dose had enough of a decrease of lymphocytes and increase in

> neutrophils to be considered as having a good response from

> the treatment. After 2 infusions her lymphocytes decreased

> over 50% and her neutrophils are now in a normal range. We

> returned home tonight after 3rd session. Because of her

> positive response, she is eligible to return for 4 more

> sessions. We are also hoping that this will also help her

> MDS. They are using the same dosage in phase 3 trial to

> treat MDS.

[Guest guest]

The trial is most likely NCT00861510 which lists CLL along

with MDS and other blood cancers. The NIH institute is

NHLBI.

>

> Can you please share the NCI number for the trial?

> I searched the http://clinicaltrials.gov website

> but couldn't find it.

>

> Which part of NIH is doing this trial and which docs?

> NCI?

[Guest guest]

Re: Clinical trial experience with Estybon at NIH

Hello,

It is good news that your wife is seeing benefit from the Estybon and

I hope that will give her a very long remission in good health.

This is all new to us as we just found out ten days ago that my

husband Al now has MDS (RARS) with a complex karyotype. The doctor

really hasn't told us much about this disorder. I think he is still

focused on the CLL which was diagnosed in 06. Al did FR starting

Dec. 08 but had to switch to campath and got a complete remission

until recently.

I've tried to read about MDS on line and I was wondering what

prognostic ranking you folks found yourself in. I say " folks "

because when one of us has this disease it affects us both. Did you

have cytogenic testing and find a p17 deletion? Al has this and I'm

wondering how this affects MDS.

It's rather mind- boggling to balance treatments and research of two

diseases. It's reassuring to know of a drug which targets both.

Have you experienced any unpleasant side effects? Is there an age

cutoff for this trial?

We were about to enter a trial of PCI32765 after consulting three

weeks ago-- I think it is still available to us. Also we have a

donor and transplant doctor in the wings waiting for a mini-allo.

The consensus seems to be very guarded about the transplant due to

Al's age so the doctor keeps sending us home saying you're feeling

too good. Al is 73 but very fit.. Age is definitely a huge factor

however in the risks of transplant.

Stay well, Rita