For I know the plans I have for you, says the Lord, plans for good and not for evil, to give you a future and a hope. Jeremiah 29:11

Friday, May 25, 2012

Nine month check up

I had my nine month check up a few weeks ago. Yes, I am delinquent in posting the results.  My pcr, which measures the number of leukemic white blood cells, is down to 0.5% on the International Scale.  It is 0.2% on the Mayo Clinic lab's scale, but I like the International Scale because it is simple.  Everyone's starting point is 100%, a one-log reduction is 10%, a two-log reduction is 1%, and a three-log reduction is 0.1%.  I don't need a book, computer, excel spreadsheet, or even an adding machine to understand that.  So, 0.5% is a 2 1/2 log reduction, which means I have probably achieved a Complete Cytogenetic Response (CCyR).  CCyR means that if we were using FISH instead of pcr, I would not have any leukemic cells.  FISH is a less sensitive test than pcr.  Many doctors still use FISH until the number of leukemic cells is too small to be measurable by FISH, then switch to pcr.  However, many oncologists, including mine, are no longer using FISH after diagnosis.  CCyR can only be confirmed by bone marrow biopsy, but fortunately, my oncologist doesn't believe in doing more of them than necessary.  Achieving CCyR is the most important marker for long term survival, so this was good news!  The next goal is MMR, major molecular response, or a 3-log reduction.  Achieving MMR within 12-18 months of diagnosis is not necessarily associated with better survival rates than achieving CCyR without MMR, but it is associated with higher rates of  progression free survival (PFS) and event free survival (EFS).  In other words, my long term quality of life may be improved if I achieve MMR within the next nine months.

Meanwhile, my hemoglobin and red blood cells are continuing to decline.  I believe this affects my fatigue levels, because when my hgb and rbc were normal in November, I felt fabulous.  They've been declining ever since.  We've ruled out low iron, low B12,  and low thyroid.  The remaining possibilities are a blood disorder unrelated to CML, or a toxicity effect of my CML medicine.  Too much medicine built up in my system is the most likely culprit, but if the numbers are still declining at my next appointment, I will probably have a bone marrow biopsy to rule out a blood disorder.  I admit, I'm curious about whether multiple blood disorders and cancers are likely to occur in the same person, but I certainly hope I don't have yet another disorder.  I had HELLP syndrome with two of my pregnancies, and one of the elements of that is destruction of red blood cells.  I have met another person who also had HELLP syndrome with two pregnancies, and now has CML.  Maybe there's no connection, but I should ask my oncologist whether the question has ever been raised or studied.  Assuming my medicine is the cause of my anemia, my oncologist has suggested that we change medicines.  I am hesitant to change because I don't want to have to deal with the adjustment and possibly a new set of side effects.  If my pcr continues to drop with Tasigna, I might ask if we can lower my dose rather than changing medicines.  Dosage adjustment is more common with the other TKIs than Tasigna, but it's not unheard of with Tasigna, so I think we should at least consider that option since my other side effects have subsided and the anemia is my only ongoing issue with Tasigna.

In non-cancer news, Rebekah turned 16 this week!  I still remember when she turned 10, she said she didn't want to be double digits.  She enjoyed being a child and wasn't in a rush to grow up like most kids, but nevertheless she has grown into an amazing young woman.  She is the most honest, trustworthy, loyal person I know.  She doesn't like to draw attention to herself; she just quietly goes about life doing the right thing.  Her name means captivating, and it is fitting because she is beautiful inside and out.  She participated in Spring Fling this month, her theater class's spring performance, and did a great job.

Rachel's high school graduation is just two weeks away!  It's hard to believe she will be moving to college soon.  She is so excited to go to college, and we are excited to see her entering this next stage of life.  She is a hard worker and we know she will meet the challenges of college head-on.

Katie had two piano recitals this month and her dance recital is coming up at the end of June.  Her dance school has a new teacher from England.  He was in Riverdance for three years and holds numerous championship titles, so we are excited to have him on board. 

We will be traveling to MD for my family reunion on June 16. We can't wait to see everyone!


  1. Anemia is so simple yet complex to our system. I get iron iv transfusions my counts are so low in addition to monthly B12 shots, which reminds me, it is time for that. A graduate, 16 year old and a dancer, makes life full doesn't it?

    I'll let mom and daddy know the reunion date. I saw your mom at Judy's funeral, the first thing she did was to ask about Cody, it meant a lot.

    Take care of you!!


  2. Hi Angie, You're right, before all this started, I knew that anemia would make you tired, but I had no idea of all the other effects it can have. I'm glad that Cody's doing so well. Will he be able to start college on time, or will he get a deferment to start later? I know you've been busy taking care of him, but don't forget to take care of yourself, too! I would love to see you at the reunion - if things are too crazy this year, try to come next year! Love ya, Elizabeth

  3. Continue the good fight, enjoy your blogs.
    Fellow CMLer, 6 years June 23rd this year.
    Thank you for sharing. Love and Light

  4. Hi Mel, Thanks for commenting and introducing yourself. It's always encouraging to "meet" people who have survived CML for many years. I hope you are doing well. If you are on the LLS boards, what is your user name over there?

  5. missymel

    I am mainly on facebook. Melissa Woodall-Clarke, friend me if ya like.
    Continued success :)

  6. Elizabeth,

    Congrats on the good news! Keep plugging away you can do it! I found your blog searching for CML resources and would like to add it to our blog directory (link below) so that others dealing with CML can learn from your experiences. However, I wanted to get your permission first. Please contact me at if you’d like me to add it to our directory.

    Take Care,

  7. Your article is very interesting, I wait for your next article.


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