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CLL Support Association
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8 year anniversary

Hi All,

Today at this time 8 years ago I was in my GP's office having just been ordered to go to a hospital for tests that confirmed his suspicion of CLL.

Sometime in the first 2 months of grappling with a DX of CLL I discovered Chaya Venkat and PC's website clltopics.org, ACOR.org. and more recently HU. A member of ACOR sent me an email that I have kept to this day. The email predicted the median time of my probable demise at 8 years. I made up my mind at that time to regard my CLL as my teacher no matter what my fate may bring and to set as my challenge the task to beat the prediction, out of a sense of repulsion to be just median in anything. Twice on my journey it looked like my desire to avoid being a median survivor statistic would be through an early demise as a result of TX reactions but having arrived at the median point today, my goal is on doubling the time.

Persistence, a dash of good luck, timing and medical science may do the trick. I wish all of your journeys have a measure of the rewards I have encountered on mine.

My, how time flies when you are having fun;-)


10 Replies

Fantastic news!!

I am one of those who vow to not let this beat me and win the battle so I know exactly what you mean. I wish you well on your journey and look forward to your post in 8 years time where you quite rightly treat the prediction with the indignation it deservs.


1 like

May you always be a 'median dodger!'....onwards and upwards with knowledge and understanding W.



Congratulations ThreeWs

Long may your triumph over the predictions continue. You have provided a light in the darkness for the newly diagnosed.



Congratulations and best wishes for pushing the median far into the future and doubling in decades. Tw. Like Pitbull I look forward to your next post in 8 years time. Twelve years on "watch & worry" but doing my utmost to enjoy what is presented or can be achieved, good luck.


Best wishes theeWs,

You are an inspiration for me and others as are all the post

I read . may your remission continue for many years.

God bless all.


Good news Wayne :) Long may it continue.

Fellow labrat.


Long and winding road... how things have changed in the past 8 years in CLL understanding and treatment... the future is bright!

Thanks Wayne for all you have done and may you continue to guide us on our journey...

See you in Niagara Falls!



Sorry Chris (and Wayne), but maybe you need to explain about Niagara Falls. :-) The picture that came into my mind was of a rather challenging swim you were planning...


CLL LIVE 2015 it an international patient focused educational CLL conference that occurs in Niagara Fall, Ontario Canada ever 3 years...

April 23-25, 2015

Book mark the CLL Patient Advocacy Group webpage for details in the future... and there are links there about previous conferences.


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Hi PaulaS and all,

Our Canadian friends and neighbors have been putting together a world class series of Conferences dedicated to CLL education and community support that is a credit to all involved. I have attended three beginning with the 2007 Conference. It was at this Conference that I heard CLL specialist Dr. Byrd as one of the guest lecturers and met Dr. Terry Hamblin, one of the true giants of CLL research. Dr. Byrd's approach to treating CLL, as discerned from his talk, led me to his Clinic in 2009 and again in 2011 where I enrolled in a Phase 1b Clinical Trial with what is now called Imbruvica/Ibrutinib.

The benefit of meeting with some of the world's top medical researchers focussed on CLL is, as they say, not to be missed. Today, with literally dozens of new therapies and drug combinations not available a couple of years ago, patient education is both more challenging and necessary than ever before. CLL LIVE 2015 is the one "must go to" event.

We are often frustrated at not getting enough time to question our own doctors and this will be a chance to ask questions of a general nature at lecture time and if lucky, to ask questions of specificity to your situation after the lecture period when the Docs give some of their time for one on one. Hell, one can even go just for the food and views of the Falls and not be disappointed;-)

Hoping to see many of you there!



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