The Journey: Liver abnormalities and infections galore

"Though my soul may set in darkness, it will rise in perfect light; I have loved the stars too fondly to be fearful of the night."

-Sarah Williams, "The Old Astronomer"

When I was first diagnosed with CML, my then-oncologist, Dr. N, said that I was "lucky." CML is the "easy" cancer. I was told you just take a pill for a long time and that will zap the cancer really quick.

I wasn't told I'd probably have to take the pill for a lifetime.

I wasn't told about any of the side effects -- diarrhea, vomiting, hair thinning, chemo brain fog, joint and muscle pain, possible liver toxicity. None of it.

I was also placed on 140 mg. of Sprycel, a second generation drug, at its maximum dose.

A year and a half later, I started developing serious liver problems, with liver enzymes in the thousands and climbing. When my small, local hospital failed me, I was referred to the University of Michigan's ER.

Doctors there were shocked to hear I'd been on 140 mg. of Sprycel for so long and that Gleevec, the first generation pill, wasn't tried first. Later on, my new oncologist, Dr. Moshe Talpaz, confirmed for me that had I seen him first, he would've likely started me on Gleevec -- which he helped create -- as opposed to Sprycel. And he also would've started me at a lower dose so that we had some place to go if the cancer grew stronger. It's not uncommon for CML patients to have an immediate response to the first drug at the first dosage, but then have a recurrence of the CML and need a higher dosage or a different drug to keep it in check.

I also learned at U of M that there is no real remission for CML, at least not in most cases. The chemo pills we take, known at Tyrosine Kinase Inhibitors (TKIs) are targeted chemo pills designed to attack the production of immature white blood cells by the genetic mutation knows as BCR-ABL1 or the Philadelphia Chromosome. No pill can change a genetic mutation back. Without TKIs, BCR-ABL1 acts like a light switch that is always on and always producing these immature white blood cells, which will eventually kill a person. TKIs attempt to turn that light switch off. But without it, the BCR-ABL1 will creep right back in, at least for most patients. TKIs cause a response, but not usually a remission. There are current studies and patients who have been on long term TKI therapy with no recurrences and no problems during their course of treatment that are now being taken off TKIs to see if their response lasts. I am not one of those patients and neither are most CML patients I know.

At U of M, the name of the game was finding a drug -- any one of the drugs -- that my liver could tolerate and that could bring my CML to a molecular response. I tried three drugs: Sprycel, Gleevec, and Bosulif. Over the course of four years of trying, I was hospitalized with diverticulitis another two times, pancreatitis once, pneumonia a couple of times, and for critically high liver enzymes that required biopsies four times. Because of these complications, the other drugs available for CML patients were contraindicated for me -- they would certainly only make my liver worse or would cause pancreatitis again.

Over the past year, our strategy has been to give to me small doses of Sprycel -- only 20 mg. -- for as long as possible until my liver enzymes started to rise beyond what was normal for me. At this point, we aren't even looking for the liver enzymes to stay within normal limits, but just to be stable at numbers that are normal for me. In a best case scenario, I was able to stay on Sprycel for a month before needing a break from the Sprycel for another two weeks. But it's been more like two weeks on, two weeks off. And in a few instances, my liver enzymes have continued to rise even after I was on a TKI break. 

Now, we are trying the same thing with Gleevec, in combination with Hydrea, a straight up chemo pill designed to kill off immature white blood cells. Even combined, we are having trouble achieving that.

It's also extremely hard on my body to go on and off the TKIs so often. Each time, my body has to re-acclimate and adjust to the side effects. When I'm not on the TKIs, the cancer soars and that makes me extremely tired and run down. I'm not living a life. I'm basically chained to the couch and my bed.

This is what has brought us to the stage we're at now, where we are actively preparing for a bone marrow transplant. 

xo,

Heather