PCI-32765 monotherapy Clinical Trial cycle 3, a rock and a HEART place - part 1

[Guest guest]

It has been an interesting third cycle and a good time

before recounting events to remind everyone, especially

newcomers to the List, that my experiences from CLL and

history of treatments will be a unique experience as it is

for each of us. I would therefor caution that the hope of

each of us to find the safest path to navigate the hazards

of both our disease and treatments is not easy. Our sharing

of our stories and observations can only highlight potential

pitfalls and promising strategies.

I said in my very first post to the CLL Listserv that I

aimed to make CLL my TEACHER and she is proving to be that

in spades. During cycle 3 I was incapacitated by an 8 day

hospitalization due to cardiac issues. This was quite timely

for the recent postings from Bob Riegg, Koffman, Tim

Klug and Dwyer under " R's effect on the heart " ,

Gretchen Cover's post " chemo heart issues " and Malcomb

Airst's post " Rituxan: Metabolism Change and Heart Damage " .

In our journey of CLL progression we are often confronted

with extremes of success and failure regarding

manifestations of the cancer itself and the results from our

treatment choices. There are questions I believe to be

important to ask to properly assess the cause of an observed

or experienced adverse effect and since I have just

undergone a procedure for right atrial flutter called

catheter ablation the question for me was how was my heart

dysfunction related to my CLL or to my PCI Clinical Trial

since patients who are entered into the PCI Trials are

screened and closely monitored with ECG/EKG? The following

questions are how I sought to define the situation.

1) What was the baseline condition of my heart prior to CLL

and any TX? I am genetically bradycardia (low heart rate =

below 60bpm) with heart murmur from an early age the same as

my Father who ONLY lived to 87 after 6 yrs of untreated

bladder cancer. <

2) When and under what conditions did heart symptoms first

appear and reappear? The first time I ever experienced an

arrhythmia was two days after the end of my 1st cycle of RF

in Aug. of '09. It lasted for 6hrs and converted to normal

sinus rhythm with no medical intervention. 2nd & only other

instance before taking PCI was 2 weeks after three days of

Rituxan in March of this year. It lasted for 8hrs before

converting to normal sinus rhythm - no medical intervention.

After taking PCI I have had three more events of

arrhythmia/flutter/tachycardia (high heart rate = above

100bpm) each lasting a few hours longer than the previous

events with increased severity. The last event forcing me to

go to the ER lasting approximately 5 days before converting

on its own. I had the catheter ablation two days later based

on a diagnoses of right atrial flutter.

3) Was PCI the cause of my atrial flutter and is PCI a

serious risk to me in continuing with the Clinical Trial? I

have not been aware of any other patients on PCI having a

similar heart problem although PCI has been shown to induce

bradycardia. Doctor feedback has indicated that because I am

" brady " to begin with, that any causative agent i.e. PCI

that could further lower my heart rate may trigger an

" escape " mechanism by the heart to correct a perceived

threat from too low heart rate involving the sympathethic

nervous system. While the potential for additional

arrhythmias is possible, nobody dies from arrhythmia. The

danger from arrhythmia stems from blood clots which could

form during an arrhythmia event and travel to the brain or

lung. My greater anxiety was the fear of being made

ineligible for continuation with the PCI Trial because PCI

has given me a much greater quality of life and I have not

many options left in the tool kit. Heart checked out in

perfect rhythm after the ablation procedure and the

electrophysiologist was 95% sure the atrial flutter would

not reoccur.

Cycle 3 Part 2 will be concerned with an interesting and

temporarily scary set of bloodwork labs while awaiting the

ablation and being off PCI for 4 days.

WWW - The " Bear " will dance when given the chance.