Monday, April 28, 2014

The CML Roller Coaster

Living with a “chronic” cancer is much like the weather; it is unpredictable. And just like the weather, no matter how prepared you are it can catch you off guard. On April 7th, 2014, I saw my oncologist; it was a routine appointment and all of my labs looked good. The pleural effusion was minimal, my blood pressure was typical for me, and as par for the course; I had gained two pounds. The only thing that was a bit askew was my blood sugar, which often runs low; today it was 62.

We went over the current course of action, which was 70 mg Sprycel, seven days a week with breaks if the pleural effusion felt as though it were increasing, or if the pain was too extreme. The prior three months had been the same; I had missed taking my meds, sporadically for twenty days. I suppose that I had had a false sense of security as my two previous PCR tests had been negative. I really felt as though I was going to be one of the lucky ones and that the CML was going to stay suppressed forever!

Apparently I was wrong; my PCR results came back late last night; it was the very first time that my blood was tested on the International Scale and I have decided that I do not like it! My PCR has gone from negative to .4%, or in other words 4 out of every 1000 cells are bad.

What this initially means to me is that I must now increase my dose of Sprycel from 70 mg to 100 mg; it also means that my dream of going from 70 mg to 50 mg, at this time, is shattered. I really have not thoroughly processed this news yet, but I am well aware that having chronic myelogenous leukemia is nothing to take lightly. I am going to have to step back up to the plate and try and tolerate the increased side effects once more.

That is the most depressing part of living with a chronic cancer; I really hope and pray that sometime during my lifetime, there really is a cure. I would love to be able to say, “I HAD leukemia, and I am a survivor!” But for now I will continue to say, “I am still, living well with CML.”

My plan is to suck it up for the next four months, suffer through the side effects and not miss one dose of Sprycel; unless the PE dictates otherwise. I will suffer through the pain and will fill my prescription of Gabapentin, in the hopes that it helps to calm the peripheral neuropathy. I will continue to pray, to dance and to live my life to the best of my ability, not taking one day for granted.

I will fight my way back to a negative PCR and try not to allow the roller coaster of CML to darken my path. I know that this is just a reminder to not become too cocky, and to accept the fact that I have cancer; I have cancer today, tomorrow and possibly for the rest of my life. I need to cherish my days, be diligent in my treatment and look forward to my next, negative PCR.

Blessings to all that are on this journey with me; as we all know, some days are better than others and just like a roller coaster, sometimes we are up,sometimes we are down and sometimes we are terrified; but we must always remember to enjoy the ride!


  1. The CML roller coaster is so frustrating - I'm sorry you're going to have to bump your Sprycel up and not down :(

  2. I'm so sorry. Hoping and praying it gets better for you soon. Hang in there. -Donna

  3. that is still not a "bad" result I don't believe...........

  4. Stephanie, Thank you! I am sorry, too!
    And after being negative, 0.4% is quite an increase. It equates to 4 in every 1000 cells, I believe.


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