CAL-101 and cytokine storms

[Guest guest]

I was taken off CAL-101 because my liver enzymes were

elevated. How elevated, I don't know. I received an e-mail

after I left the clinic, as the lab results apparently had

not come in by then.

I was given to understand that the drug is withdrawn when

the liver enzymes became elevated. This came after being on

the drug for three months.

I suspect that the sole reason my abdominal pain was due to

lymphocyte retreat into the lymph nodes because (1) my belly

is visibly larger, (2) my lymphocyte count in the blood is

decreasing per the emergency department's blood work, and

(3) CAL-101 rapidly decreased the size of my nodes.

Withdrawing it should mean that the lymph nodes would just

as rapidly reconstitute.

I don't think the reason is a 'cytokine storm' or any such

thing. That may result in the general malaise I felt for

several days, as well as the fever I spiked, but I think

CAL-101 somehow shuttles the lymphocytes out of the nodes

while it is there, and when it is not, the little buggers

scoot right back in.

It was very, very painful, I can tell you that. I was in

agony for several days. I understood why people kill

themselves because of cancer pain. That was a lesson in

understanding, and I will be less critical of those who seek

to end the pain in any way possible.

At 07:39 AM 4/28/2011, Rick Furman wrote:

.... It is hard to know how to interpret this as the patients

who have discontinued treatment have only been those who

really did not respond. We do not know what that would mean

for someone who has responded, as there is no reason to stop

therapy.