The First Day

 It's the race of my life

In 2008 I was diagnosed with  CLL an incurable form of Leukemia (CLL defined) after a routine blood panel.

My first reaction was shock, disbelief and some self pity. Why me? What did I do wrong? I always ate properly, exercised and thought I did all the "right" things. For years I read everything I could get my hands on about the disease. I was told there was no cure, that I had maybe ten years but there were treatments.  Apparently there was one potential cure: a transplant. Wow!   I want that! So I was pre-screened and accepted into the Leukemia Bone Marrow Transplant Program at Vanvouver. First off I have to tell you it's a bit of a misnomer as they no longer do "bone marrow" transplants; but rather "stem cell" transplants. I could get very technical on you about this because believe me in a short while I had become very proficient in biochemistry. I am going to spare you from all that. Basically a stem cell transplant is where they give you someone's healthy killer T cells and they then act like magic cleaning mops and go around your body killing all the "bad cells."

I am going to digress here. Leukemia is a terrible but ingenious disease. It's terrible because it destroys your immune system sometimes rapidly (as in MLL, or ALL) but slowly in my case (CLL). The result is that the patient dies from opportunistic infections such as viruses, bacterial infections etc. much like AIDS or HIV. It's ingenious because there is a triple whammy: it's caused by a genetic mutation (deletions of parts of DNA).  The bad cells are immune to normal cell death (all our cells are all programed to die: called apoptosis). The bad cells reproduce like crazy and our normal defense mechanism: the killer T cells are retarded and don't know or recognize the "bad" cells to be killed.

OK I hope that's clear! Back to transplants. Someone's T cells are supposed to kill the bad cells. But here's the thing. There is a 40% chance that patients don't survive the procedure and a 60% chance of ending up with two new diseases: GHD or HGD. Graft host disease is where the new cells are so aggressive that they kill everything: cells, tissue, organs and eventually you. Host graft disease is where your own body rejects the new cells and creates a war where your immune system is severely compromised and, you guessed it, you will eventually lose. So a transplant was presented to me as my "best option" for a complete cure.  Not great right?

Fortunately I did not have to consider this for a long time. Meanwhile most of my friends and acquaintances were very helpful in suggesting a multitude of alternative therapies from frozen lemons, coffee enemas to THC. Most were ineffective although the THC helped with sleep, pain and nausea. I saw a great naturopath for years Walter Lemmo who helped me steer through the morass of alternate treatment options and integrate with regular treatments.  I am sure he helped me ward off treatment for all those years. In that delay newer and better drugs were developed but mostly for secondary treatment. You see, because of genetic testing, it is anticipated that treatment will not give me a permanent or long lasting remission. However the newer drugs are safer and better than transplants, although not a complete cure. Not yet.

After 8 or 9 years of what the medical world calls "watching and waiting,"  sadly my white blood cell and lymphocyte counts skyrocketed. My lymph nodes grew very large and I was getting sicker. So on April 20, 2017 my excellent specialist Dr. Adrian Yee of the BC Cancer Agency (BCCA) told me "it's time." I had been mentally preparing for this for years but the impact was still huge. Having chemo is an admission that a disease is so life-threatening that a drastic measure is needed to save your life. It's emotional and scary. Here's a link to a complete backgrounder to front line treatment in Canada.

The standard or "front-line" chemical treatment (chemotherapy) that's approved by medicare in Canada is known as FR. The F is for  Fludarabine a very powerful DNA disrupter that effectively induces widespread apoptosis (cell death). It is administered by pills for 5 days in a row 6 times with 28 day intervals. I started that. The R is Retuximab a monocolonal antibody which targets the diseased "B" cells by marking them for destruction by my own immune system and is administered intravenously once a month also for 6 cycles. More information can be found here: FR

So far I have tolerated the Fludarabine quite well except that I must drink 8 glasses of fluids a day or my kidneys are impacted. The first night I had a lot of kidney pain because I apparently had not consumed enough fluids. I hope not to make that mistake again!

So I am off on the adventure of my life and hope to include you in it as I progress.

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