Tuesday, April 3, 2012

Do Not Like New Test Results; If I Had a Super Power for One Day, I Would….


Shortly before Christmas 2011, I had a routine, if you can consider routine visits for leukemia to be “routine”, visit with my oncologist. I had been a bit under the weather with the chest crud that was going around, but still kept taking my Sprycel religiously. It seemed that my persistence in taking my Sprycel as prescribed, without ever missing a dose, had paid off.

Shortly after the New Year, my doctor informed me that my Polymerase Chain Reaction test had come back negative! Negative for the BCR-ABL , RNA or DNA, which is the best possible result that a person with chronic myelogenous leukemia can hope for. It was a great way to start the New Year, and he and I were both optimistically surprised, and hoped that the negative PRC would remain. He actually said that I was quite remarkable in that regard and he was so very happy for the negative response. I, of course was excited at the prospect of lowering my Sprycel dose down to 5 days a week from my current 6 day a week regimen. He told me that because of the rapid decrease into “remission” he would not be lowering my dose of Sprycel until I had another negative reading.

Since the response was such a surprise, and not a guarantee, I figured that I would wait three months to share my “happy” results with a second negative report.

Unfortunately that did not happen; my PCR came back positive; 8.9x10-4, from what I can tell, it is twice as high as it was last October (3.99x10-4) as you can imagine, I am not one bit happy about these results. I have to admit that I was totally blindsided; it really did not occur to me, that there was even the remotest possibility that I would not remain in remission; my response to this is; this totally sucks!

So, I am waiting to hear from my doctor as to whether or not I should up my dosage of Sprycel to 6 days a week or not, or if I should be concerned as to whether or not I am becoming resistant to the very drug that is keeping me alive.

Today’s WEGO health blog assignment was to write about a “SuperPower;” what mine might be, and what I might do with it. Well, for me, my super power would have to be the power to heal. To not only “heal” myself, but to heal any and all that suffer from difficult cancers, diseases and conditions. I know that would be a crazy “super” power and that our world would suffer greatly due to over population, but I certainly wish that I could heal all of those who are suffering. If that super power was off limits, then I would choose “energy;” I wish that I could have the energy that I used to have before the Philadelphia chromosome decided to take up residence in my bone marrow!

6 comments:

  1. I am so very sorry about your results.I hope it's better next time.I just started my Sprycel tonight.*HUGS* Joan from Jax Beach,FL

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  2. Wishing you well Joan, I am amazed at the amount of people that I am meeting with CML. They seem to describe it as a "rare" disease! lol
    Do you know what you starting PCR is?

    Best to you,
    Michele

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  3. Hello, my step daughter is in remission with ALL (leukemia) so i know a little about what you and your family are going through. She was 7 when diagnosed and is 5 year in remission in November.

    Along the way, she had major setbacks, lost her sight was very very ill. But like you is a fighter. I really hope your next test brings you the result u are looking 4. I will follow your blog with hope!
    If your interested my blog is: http://littleboyred.blogspot.co.uk/
    I have written about Step D a little, but will write more at a later date.
    Good Luck with your treatment. Stay positive.
    Angela

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    Replies
    1. ps i have just tweeted your blog. . .hopefully u may get a little more traffic through!

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    2. HI Angela,
      Thanks so much for your kind encouragement!
      I pray that you daughter remains in remission; hearing of stories like yours makes me realize how fortunate I was to only have to be dealing with this as an adult.
      Makes my issues "minuscule" in comparison!

      Thanks for sharing!
      Michele

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  4. HI Angela,
    Thanks so much for your kind encouragement!
    I pray that you daughter remains in remission; hearing of stories like yours makes me realize how fortunate I was to only have to be dealing with this as an adult.
    Makes my issues "minuscule" in comparison!

    Thanks for sharing!
    Michele

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Bricks for the Brave!!