Off CAL-101 trial, and having problems

[Guest guest]

I've been taken off the CAL-101 trial due to rising liver

damage indicated by enzyme tests. I expected to notice a

gradual increase in the size of the lymph nodes, maybe even

back to where they were before I was on the trial. I also

expected to see my numbers change.

What I got instead was an agonizing weekend of pain and

misery. I was taking 150 mg of the CAL-101 twice a day. I

went to zero in one day. My lymph nodes increased to at

least they way they were before I started the trial, but

instead of gradually increasing in size, they exploded in

size in a few days. This led to me having to go to the

hospital with some of the worst pain I've ever felt.

I suppose what happened was that the rapid increase did not

let the organs in my abdomen to gradually accommodate the

increased size of my rather large nodes. Instead, they just

pushed on various places and gave me such pain that I

couldn't cope. I called the Stanford on-call oncologist but

they wouldn't give me any pain medication over the phone.

The strongest pain medication I have at home is ibuprofen,

which didn't make a dent in the pain.

I ended up going to the emergency department at the local

hospital. I also took stool softeners, to help shrink

everything down and make everything go through the canals

more easily. By 1:00 AM, I felt better and told them I was

going home.

I also have spiked a fever of 102. I'm on an antibiotic for

that.

I couldn't make it to Easter services, which I didn't want

to miss. And yesterday, Monday, I could do nothing but

suffer.

My recommendation is to find a way to tell if patients

cannot tolerate the CAL-101 (liver) so people don't have to

suffer like I did. Also, it might be better to taper down,

rather than quit cold turkey.

I will be evaluated this week to see if my liver

inflammation has gone down. They said it is possible that I

might go back on the drug if that occurs.

We need better CLL drugs.

My experience as very, very unpleasant to say the least.

Now, I'd gladly go through this two day agony if CAL-101 was

a cure, but it isn't, no matter what anyone says.

BTW, the clinical trial people at Stanford did respond in a

timely fashion, and also recommended that I go to the

emergency department.

Fever is under better control now, as well.