btk inhibitor: Encouraging account from a MCL survivor

April 21, 2011

Greetings,

It's always great to hear that a novel targeted agent appears to be

benefiting one of our own . as we did earlier today on the MCL support list

- copied below.

Of course we must be VERY cautious about interpreting reports from

individuals (testimonials) and other unpublished results - because we can't

tell from them how likely it is that others will benefit (we don't have a

denominator needed to provide a rate) - nor do we know how long the benefit

will last - if it will turn out to be clinically meaningful - that will

require sufficient follow up in ongoing clinical trials.

That said, there seems to be cause for hope for the btk inhibitor based on

some published reports on its activity and safety - and the hopeful account

that follows.

Dx: Mantle Cell Lymphoma, May 2005, age 54..

Rituxan/HYPERCVAD beginning Sept. 2005, M.D. Cancer Center,

Remission: June 2006. . Relapse: Dec. 2007

Rituxan/Velcade until March 2008. (moderately successful)

Revlimid Clinical Trial: March 2008~June 2010. (Relapse)

RAD001 Clinical Trial: July 2010~March 2011 (moderately successful)

---------Now, for the BEST part--------------

BTK Inhibitor Trial: March 25. Just three days after I began the Trial, I

noticed the cancerous mass on the right side of my neck begin to shrink.

THREE DAYS! In just three weeks, the mass TOTALLY DISAPPEARED. I have

personally documented this via digital photos. I am experiencing absolutely

NO side effects, and feel terrific!

==

Here some background on the agent: The Bruton tyrosine kinase inhibitor

PCI-32765 blocks B-cell activation and is efficacious in models of

autoimmune disease and B-cell malignancy

For more information and links to trials:

Here's to plausible, science-based hope.

All the best,

~ Karl

Patients Against Lymphoma

Patients Helping Patients

Non-profit | Independent | Evidence-based

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