April 29, 2006 - Day 4 - Week 4 - Let’s Talk

There are many great cancer clinics in the United States. Let’s take a quick tour across the country:   Dana Farber Institute in Boston, Memorial Sloan-Kettering Cancer Center in New York, Rush Cancer Institute in Chicago,  MD Anderson in Houston, Fred Hutchinson Cancer Research Center in Seattle and in my home town of Los Angeles The John Wayne Cancer Center,  Norris Comprehensive Cancer Center and The Angeles Clinic, just to name a few.  The collective mission, as stated by one, and applied by me to all is clear:  “Elimination of cancer as a cause of human suffering and death.’  Amen.

I know of each clinic or center because each was graciously recommended to me over the past few weeks. It seems when we attain our middle years of the 50’s and 60’s many of our friends and acquaintances are in positions of power and responsibility and know of others who are. It is great when this is all shared to the benefit of others.

Thus, through word of mouth and personal experiences shared most of us can access very good treatment opportunities in a geographic region in close proximity to where we live. All across America individuals like you and me are walking into the offices of cancer clinics designed to treat and heal. We are indeed fortunate in our nation to have such diverse and professional medical personnel.

However, one conversation I had this week was about a rare form of cancer that is shared by only 5000 individuals worldwide. These brief but powerful few minutes made me appreciate my good fortune.  Of that small number, my new friend Diane, a Californian, had to travel to Houston Texas for treatment of CML, or chronic myelogenous leukemia. Only within the last 2-3 years has a method of treatment been offered that enabled those with CML to live. My new acquaintance is now hope filled.

I listened with great interest as she demonstrated a profound understanding of her own disease.  In addition, the progressive approach that unfolded like a movie gave me insight that should be shared with millions.

Owning of the cancer should be the opening scene of anyone’s developing story moving towards wholeness and well being.  Those with CML have done that and this has led to a group forming on the internet that links all in a unique way.  The educational highway envisioned by many is real for the 5000 people afflicted with CML.  Their on-line chat room provides mutual support and understanding with very specific suggestions.  For example, Diane shared that the medication often results in swollen eyes.  When one person places this on line for all to read then comfort comes knowing that she is not the only one with swollen eyes. Another was able to relate that the latest medicine targets specific chromosomes, nine and twenty-three to be exact, and that is why the death sentence has been commuted with this disease.

The lesson is a good one.  Saddled with a previous incurable disease, open channels of communication, and advances in science have reversed both the literal and psychological pathway to death for thousands.

This part of the movie script has been unfolding with very positive results while simultaneously government sponsored clinic trials have been on going. Risking for others, volunteers are able to provide sound science for emerging drugs and treatments for a variety of cancers, including CML.

Now it is time for me to ask about clinical trials for mantel cell lymphoma.  It is also time to discern the truth about the varieties of treatments available.  How to accomplish this?

First of all does anyone know of a MCL (mantel cell lymphoma) chat room or discussion group on the internet?  The effectiveness of sharing personal experience has been borne out for Diane and her friends.  Why not for Peter, Wendy, and Jerry and their friends?

We are all social beings in need of and emboldened by the wisdom and experience of others.  Story telling, rather than being accepted as a dying art, might be resurrected in this new form so that others near and far can benefit.  No hurry, plenty of time here, but it is comforting to know that the internet is a tool for thousands in building health.

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