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

[Guest guest]

I have not yet had time to run my heart experience by Dr.

Byrd but I have some thoughts which should not be considered

as medical advice as I am uncredentialed. This is purely a

Lab-Rat's perspective:

If my heart problems have bothered you in considering

participation in a PCI-32765 Clinical Trial, keep in mind

that I have talked with around a dozen patients and I have

not heard of a similar situation as mine. I was Bradycardia

(low heart rate under 60bpm) with heart murmur from a young

age mirroring the genetics of my father. In spite of the

heart problems I now feel free of CLL and full of energy

since being on PCI. This feeling has been echoed in all but

one patient who I talked to who appeared not to be

responding to PCI.

Interestingly, as I have made a conscious effort to keep my

antennae up regarding reactions to PCI, I have come across a

higher than expected number of patients having experienced

severe bad reactions to Rituximab, not just your more common

first infusion reactions.

On my last visit to Dr. Byrd's Clinic I talked with two men,

one of who flies in from France to be monitored on the same

PCI Trial that I am enrolled in. He indicated that he was so

beat up from other TXs that he almost did not qualify for

the Trial. He looked good and considered himself lucky to

have gotten on board with PCI. The second fellow knew little

about his CLL but said he had a " 17something " and described

two masses of internal tumor both greater than a grapefruit

prior to PCI treatment. I first overheard him gushing his

gratitude for being on PCI to the nurse in a neighboring

cubicle.

My heart problems may have occurred anyway in due course or

may have been triggered earlier than by normal aging by PCI

which is highly possible given the frequency of the events

since my start of the Trial. My only other events

(arrhythmia/flutter & tachycardia) were after RF in '09 and

HD-R in March '11.

How should you use my experience to best advantage? If you

are Bradycardia (low heart rate below 60bpm) and are

contemplating using PCI I would suggest visiting a

cardiologist to get an evaluation of your risk factors. From

an echocardiogram which is a cheap test, it can tell if you

have valve damage and other structural heart issues that

might add to your risk with PCI. My heart is structurally

sound with some enlargement of the left atria so my issues

are solely with the electrical circuits giving rise to the

dysfunctions of arrhythmia, flutter and tachycardia (high

heart rate over 100bpm).

If your heart is within normal bpm (60-100) and you are not

yet experiencing arrhythmias you may not have issues at all

with PCI. Of course the Trial is to find these things out

and it could be that I am an example of a patient who in the

future would not be recommended for PCI but I will tell you

that as long as it does not kill me I am glad to be in this

Trial. Time will tell.

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