Could this be a side effect of PCI?

September 24, 2011

Tom has been on the phase I/II of PCI for relapsed patient's

for exactly one year. The last two months he has struggled

with the " knock-down " fatigue and feelings of serious

malaise. It is strange because he will wake up and know

that he does not feel good---off all day long and terribly

fatigued. On these days he is also very cold and has to

wrap in blankets. He tries to exercise but on these type of

days the exercising only wears him out more. He also has

trouble emotionally on these days. He is experiencing these

types of days around 3-4 out of 7. On the days where he

awakes feeling pretty good, his only complaint would be some

fatigue.

He has always had a rash while on BTK and he has nasal sores

and other immunocompromised problems. His dermatologist is

positive that his red spots along with itchy rashes on his

arms are CLL related. He has had many skin infections but

they have cleared with meds from his dermatologist only to

come back again after a few weeks.

BTK has taken his lymph nodes down to normal size but when

he had to quit BTK for 3 days due to a high fever, his lymph

glands started ramping back up on day 2. Once he restarted

BTK, they were down again within a month.

I know this is a trial and all side effects are not known at

this time, but I am wondering if long term use of BTK is now

actually starting to enter a negative phase or perhaps it is

losing it's positive impact on stopping CLL. The only other

idea I have is that CLL is so smart that it has moved from

his glands into his skin.

Any ideas would be appreciated.

Lou

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