First lap

So here I am several weeks after completing my first cycle or as I like to call it "lap" of treatment.
There weren't too many bumps, mishaps or crashes along the way. Fatigue is my biggest complaint.
I got used to CLL fatigue which is considered "normal" but I noticed a reoccurring deep kind which felt almost flu like. No fevers but night sweats, chills and a feeling like I wasn't capable of much. Now this wasn't constant just periodic after activities and compounded by any sleep loss. I have also lost almost 20 pounds over the last six months despite having a healthy appetite. Doctors aren't really interested in these "minor details."  They are mostly concerned with reactions like: high fevers, rashes, blisters and other unpleasant but drastic symptoms.

So I am needing more sleep, naps, and to pace myself in exercising and trying to eat more. (I can hear my grandmother's voice in me head "eat eat!") I also need to be careful not to expose myself to people with colds and viruses. You see the treatment reduces my white blood cell count over time which also weakens my defense mechanism to these culprits. It also reduces my platelets. These little guys help with blood clotting and reducing bruises. So I am supposed to avoid all "risky" or "dangerous" activities like: shaving with a razor blade and use of sharp knives. Since I shave my head and face and like to cook and ride bikes this will be a challenge.

I also work predominately as an arbitrator and a mediator these days. For those who who are unclear; an arbitrator decides disputes (much like a judge does) and a mediator works with the parties to help them communicate (negotiate) and ultimately resolve their disputes between themselves.  Sometimes the parties are in conflict over important issues like; will they be able to keep their home, kids or job. But often they are petty squabbles over small amounts of money or personality traits that irritate them.   I have to say at this juncture that there is nothing like fighting a life-threatening disease to put things into perspective.  I find that I am losing interest in listening to these stories. It's a little embarrassing because I have spend over 35 years helping people in crisis resolve their disputes or legal problems, first fighting for them as a trial lawyer and the last 10 years as an arbitrator or mediator, and I have always thought I was selfless in this endeavor.  Now I find that I need most of my energy to fight this disease and heal from the onslaught.

I wanted to address some comments that I hear from fellow CLL travelers and concerned well-meaning friends. Many say "why are you taking this treatment (FR)? It's old, stale, and well....just not sexy any more."  They are right. There are other treatments being used for front line (first treatment) in the US such as Ibrutinib a kinase inhibitor. Ibrutinib is a targeted therapy like Retuximab but its mechanism is very different in that it for all practical purposes starves the cancerous cells and then they die. Here's a helpful link. It's fairly new in that its track record is only about 5 years. It has issues. Firstly it must be taken daily forever as it is not a cure. Secondly its cost; over $ 100,000.00 per year. OK that should be enough of a problem right? In Canada we have a public medical system unlike the USA (don't get me started about that topic) and we all share the cost. So that's prohibitive alone. Thirdly there are many side affects that can be treated with other drugs but a small subset of  people are beginning to "fall off" that drug. I mean that it no longer works after a while for some people. The cost alone is a huge deterrent. Even in the USA where the private insurance companies control the system, many who are prescribed the drug can't afford it because they are only covered for a portion of the cost. My own specialist feels the big pharmaceutical companies are pushing the drug for obvious reasons.  Finally, and this is the big kicker, only FR or FCR in the USA has the possibility of a complete and full remission. Ibrutinib keeps the disease at bay. Stops it from growing, but so far there is no concrete and final evidence that this is an indefinite result. So far many of those on the drug have been cancer free for over 5 years! There is a lot of debate in the CLL community about the "best" and most tolerable treatment but so far no matter what treatment we get, there is still no cure for CLL no matter what treatment options are currently available. There is an excelent blog by Dr. Brian Koffman who is a CLL patient that all other treatments (FCR, transplants) failed who is doing really well on Ibrutinib. You can read more about his journey and follow him here.

Another detail which might be too much for some and not enough for fellow CLL'ers is genetic mutations. Prior to treatment a genetic test is given. It's called a FISH test. What the heck do fish have to do with your cancer you might ask? Well here's a very good explanation (be sure to scroll down the page). For those who like detail here it is.    My results indicated (I have had several) that because I have an 11q deletion which the literature indicates  is  a marker for a  likely "poor prognosis."  This means that the CLL is more aggressive and that standard chemotherapy (FR) is "likely" to be refractory. In plain language I am in a moderately high risk category and it is "expected" that a FR induced remission will not be long lasting. Now these are statistically produced prognosticators, meaning an educated guess. So no one really knows how long the remission will last. But as I stated in my first post there are great drugs (including Ibrutinib) which are currently approved in Canada for secondary treatment (if and when I fall out of remission). And newer drugs and treatments are in the lab, so to speak. So please don't worry! I'm not!

Right now the best thing I can do, is take it easy. So until next time I post, that's exactly what I plan on doing. Thanks for checking in and don't forget to fill in your email address in the form at the bottom of the page if you'd like to ride along!