Friday, March 11, 2016

Side Effects SUCK!

Apparently I had been living in Wonderland just a tad too long; life was becoming more "normal" than it had been, since my chronic mylogenous leukemia daignosis, five years ago. There were more days days that I did not think about CML, than days that I did, and more days that I felt relatively "well". My side effects were minimal, and through the years I have learned to cope with, and accept, my new normal.

I suppose that the universe must have heard me marvel at how awesome everything was  going, here in Wonderland, and decided that it was time to yank me back to reality! This yank began with what I thought was a throwback, to my old back antics. I reached for something and my hips shifted to the left, and my shoulders shifted to the right; this knocked me right out of commission; total bummer.

That episode lasted approximately ten days, but during that time, I realized that many other debilitating side effects decided to join the party. I currently have that all over achy feeling, muscle and joint pain, headaches and that terrible neuropathy in my CML Hands, which  keeps me up, all night long; a harsh reminder that I still have cancer.

What I also realized was that I had started a new bottle of Sprycel. I grabbbed the old one and just as I had suspected, it was a different Lot number than the previous five bottles. I then went to the calendar where I record my Lot Numbers and side effects and marvel at the fact that I have not had one pain entry in five months!

I really ahd been living in Wonderland! I had found a golden supply of Sprycel; one that worked for me. Acceptable PCR and acceptable amount of side effects. Sad truth however, I knew that eventually the party would end; I just never realized how abruptly it could happen.

Just when you think you are in control, you are reminded that you are not. You are at the mercy of so many different aspects of the medical profession; oncologists, pharmacists, researchers and drug manufacturers. Because I have a chronic cancer of the blood, I either choose to treat the cancer, or not.

Because I love life, and all of the people in my life, I choose to keep on- keeping on, praying that someday there will be an actual cure. A friend recently posted a most perfect saying: "When I am resting because my body is weak, I need to remember that I am not wasting the day. I am doing exactly what I need to do; I am recovering."

While this is not an easy thing to accept, it is my reality, and I must accept that.

On the up side; I started a new bottle of Sprycel, with a new Lot Number, last night. I am praying for these side effects to lessen, so that I am able to rejoin the living.

If the odds are in my favor, and it is a great bottle of Sprycel, you can bet that I will not waste a single moment, of my days in Wonderland!


  1. I am still on Gleevec 14 years in and I've noticed changes in side effects between lots and dosage too. Stay CML strong!

  2. Feeling terrible I've not been to your blog lately! you've always remained in my heart and prayers. This post allows me to be 'selfish' and give myself time to get well. Thank you Michele.

  3. It's very encouraging to read of other's experiences with Sprycel. I've been on it for a number of years. In Dec 2015 I convinced my doctor I needed a drug vacation because it seemed I could no longer live with the side effects. We agreed to a a one month drug vacation. Because of problems with blood test analysis I'm still off the drug in Mar 2016. I see my doctor tomorrow. I've no idea what we are going to do, but I'm quite apprehensive. I assume I will start back on Sprycel but he may have other ideas. Anyway thanks for this site. I come here when I need reassurance that I'm not the only one dealing with this disease.

    1. David, So glad to be able to help!!

      Please keep me posted!!


  4. Hi Michele. I really hope you can help me. I've been seeing the same Dr for over four years. I've had a high wbc count every time I've had blood work done since I've been seeing him. I went to an appt last week and my white blood cell count was 14,000. I wasn't surprised because its been around that number for a long time. It goes up some and then back down. This time he said i should go to a hematologist to check for leukemia. I'm freaking out. My appt isnt for a month. I have four kids and i keep picturing myself not getting to see them grow up. I really need some help getting through this. I have panic disorder and I'm losing it. Please help me. The only symptom i have is body aching but I have fybermyalsia. Also tired but I'm always busy with the kids. Just need help

  5. Carrie, it is not a bad idea to see a hematologist. 14,000 is not extraordinarily whites were 385,000 at diagnosis.
    Try not to worry to much, and continue to call the hematologist for a sooner appointment. They have cancellations, i am sure.
    Keep me posted,

  6. I was diagnosed 2 weeks ago with cml, Dr didn't tell me much so I don't know what to expect, I feel really tired.
    Is that normal? He has prescribed Sprycel,really wish I knew what to expect each day,

    1. hi Shirley, if you read my blog from the beginning, you will see the upw and downs of Sprycel! Here is a post with important links for newly diagnosed:


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