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Saturday, August 31, 2013

A Negative PCR! Really?

Ok, so you may have been reading, I have been doing a bit of an experiment; I have had an increase in my PCR test for the better part of a year, and for the past four months, I have been taking Sprycel with a tablespoon of Mother’s vinegar, in water, to see if a more acidic stomach environment aid in better absorption of my medication; resulting in a decrease, in my PCR. Any result lower than the previous test is what I hoped and prayed for.

Well, low and behold, I just received an email from my oncologist and it stated: “PCR is negative!” I read it three times and then burst into tears. I cannot even believe it! I am uber excited, yet a bit apprehensive; is it lab error, or a fluke? I have waited two and a half years for that result and will be floored, if a little bit of vinegar, got me there!

For the moment, I am sticking with my theory; for some reason or another, I developed low stomach acid, therefore the Sprycel was not absorbing properly, causing my PCR to rise. In an artificially created acidic stomach, Mother’s vinegar and water, it appears that my increased side effects are in direct correlation with my decreased PCR.

Oddly enough, I also developed a mild case of Pleural Effusion in my left lung; my oncologist said that he sees a direct correlation between a negative response and PE; therefore, once I get over the PE and my crappy case of bronchitis, he will try to keep my on Sprycel, and adjust my dose to avoid further bouts of PE, for as long as possible.

He still feels as though Sprycel is the appropriate drug for me, although we did briefly discuss Ponatinib; he believes that somewhere down the line, I may have to make a switch and that Ponatinib may be the new drug of choice. He stated that he would like to see more of a “track record” and more statistics before actually making the switch and that if we can find a dosage of Sprycel that keeps the PE at bay, then that is what we are going to do. And now that I have a negative response, we are just going to have to wait and see if we can obtain two in a row!

Of course, if I DO have two negative responses in a row, I will be jumping for joy because I have had to incease my Sprycel intake, since developing PE and bronchitis. It has been almost two weeks and the bronchitis is nearly gone; I also believe that the PE is clearing, too. I cannot lie, I have loved the Sprycel vacation, but I am ready to get back on the horse, so that I will remain in Negative-land!

I frequently wonder about the medical profession. I often feel that physicians can sometimes be lulled to sleep, seeing different patients, with similar side effects, complaints and diseases, day after day. I wonder how often a case or situation comes along, which makes them stop and really think; “Is this a typical case, or does it need more of my attention?”

Typically, I am the one that brings up “out of the box” ideas and thoughts, with my doctors, and often am stunned when they look quizzically at me, like I am from the moon; and then responds, “You know, I never really thought of that before. I will have to get back with you.”

My Family!
I am not a medical doctor, and I am not a scientist; I am a woman that lives with a chronic blood cancer. This cancer requires me to ingest toxic medication, in order to stay alive. This medication does not have a lengthy track record, as it has not been around for a long period of time. No one knows it long term effects on other parts of the body, or whether or not it will cause additional major health issues down the road. It is a new and fascinating way to treat cancer and we all hope that someday, this will lead to a cure. It is my goal, to live my best life, and to still be around when that cure is discovered!


Cheers to Mother’s and my first Negative PCR!

7 comments:

  1. I have been on Posatinib/Bosulif for 6 months. It has brought me to undetectable PCR-this month. I am thrilled. I have tried Sprycel and tasigna. I think this is the best drug for me. Best of luck. Watch those PE's -very dangerous.

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  2. Thank you for posting!!! So glad to hear from some one actually on Posatinib; I imagine that I will be joining you somewhere down the line!
    Congrats on you Negative PCR, too!
    Michele

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  3. Thank you for letting us know how you are. I'm so glad you're PCR test results were negative. I'm sooo happy. Keep doing whatever you're doing. Love and Hugs to you!! Sandra in Sacto

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  4. Thanks Sandra, I am still in shock!
    Michele

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  5. Oh this is fascinating! I am thrilled with the NEGATIVE result....... lovely :) I also wonder whether this would be something that should be looked at when there is a slow or lack of response to a drug.. Good for you for thinking outside the box - and for posting this. Thank you!
    Annie

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  6. No kidding, Annie; I believe it is worth looking into!

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