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Need To Be Informed

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Why We Need to be Informed when Diagnosed with CLL / SLL

The reasons to be an informed and proactive patient are becoming more cogent and numerous than just a few years ago. Whether we are a newly diagnosed (DX) patient or a Wait & Watch (W&W) patient approaching the need of treatment (TX) we can enhance the quality and length of our lives by an overall strategy that I like to call “The Casino’s Edge”. Any gambler will acknowledge that the game is rigged in favor of the Casino but the Casino does not have to win every game to become very profitable. Anything just over 50% will ensure that the Casino will always win in the long haul, even if a few gamblers get lucky on some very large wins.

Let me continue to play out my metaphor.

We are playing at a game called CLL, having much in common with gambling, in a Casino called Life. The challenge for us is to become one with the Casino, tipping the odds in our favor as opposed to the patient player of pure chance. When playing at CLL, a very few will get lucky and win big with a presumed cure and a larger minority will die earlier than necessary from bad luck. Many more patients will encounter mistakes or miscalculations due to a host of situations along their journey. Many of these are avoidable by the informed patient. Brian says it best when he advises us: “With CLL expect the unexpected, both the good and the bad.”

For the majority of CLL / SLL (same cancer in different locations) patients who are in at least a few years of W&W and who progress to a need for treatment, errors in judgment by medical personnel to include physicians caused by lack of information can damage a patient’s quality of life (QoL) if not shorten a life altogether.

Rapidly emerging new Treatments (TXs) coupled to a more comprehensive understanding of CLL biology are breaking ground, promising longer Overall Survival (OS) and fewer toxicities. That is the good news. The not so good news is that many Oncologists who will be treating our CLL are not guaranteed to be keeping up with these exciting advances.

When we are the patient sitting in an examining room waiting for our 15 minutes with our doctor who, in many cases might be a general oncologist or even a hematologist/oncologist, the attention we need is competing with the next five patients who will most likely have much more aggressive cancers in immediate need of management just to keep them alive, whereas we, the CLL patient might have “minor” complaints of getting frequent infections, flushing, and unsightly lymph nodes. In the Onc’s mind we may have a “good cancer because he/she has seen only a couple of CLL patients who are in stable disease mode not having needed TX for years. While we may get some bedside manner sympathy for our “minor” complaints for which there are no easy remedies and if it is still too early for treating the CLL itself, where do you think the Onc will prioritize his or her efforts in the time allotted for his/her entire patient load?

Whether we accept the responsibility of being our own advocate or not is of course up to us. Either way we are ultimately accountable to our choices even if that means leaving our CLL journey up to fate.

I would like to convince everyone that making the conscious decision to become informed will return the gift of empowerment over CLL, a slow but terminal condition for so many of us. When I was diagnosed in 2006 I made a promise, that come what may, I would make CLL be my teacher. Her lessons have been hard at times but personal advocacy has kept me alive and for much of my journey quite well.

My life has been enriched in many ways not possible without CLL. No, I don’t mean I am glad to have it but having it, I plan not to waste the experience.

I created metaphors that relate to my philosophy of having drawn the bad card called CLL. I have drawn strength and knowledge from the communities of like afflicted patients but I make the landscape of my CLL my own. On ACORListServ. I learned that Granny Barb, whom I never had the honor to meet, had dubbed CLL “The Dragon” I cannot imagine fighting or conquering so powerful and mythical a figure as a Dragon plus I kinda like Dragons. I made my fight into an image of “Dancing with a Bear” because in dancing with a bear the dance won’t stop in spite of your desire until the bear stops. I could envision outsmarting a bear even when a bear has vast strength and more stamina than I, so by naming it thusly, I personalized my fight on my terms. One patient visualized Loving her CLL – to each her own. It ultimately should not matter to me or anyone else what one does to get a handle on a coping so long as we find it helpful and know that we do not need to follow in my foot steps or anyone’s but our own.

I will be writing more about how to sort through the growing information to strategize with our Oncologist on how best to slow the dancing of our CLL “Bear”. Bear with me.

Wayne Wells AKA WWW edited by Brian Koffman

CLL Society - Living With CLL

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