This sure wasn't in my plan, but it is my journey! To follow my story be sure to go to my first post as I am attempting to write this blog chronologically. Blog Archives are on the lower right hand side of the blog.
Wednesday, July 24, 2019
Do You Get Discouraged if Your PCR is NOT Zero?
Despite the fact that my undetected state did not last long, I will never forget that elated feeling of holding the golden egg! Me, my body and my TKI, Sprycel at the time, had done it! We had beat CML into submission and conquered the BCR/ABL gene.
Of course, that feeling only lasted for three months; until the next PCR test once again detected the burden of disease in my body. Boo-hiss; I tried not to allow this news to depress me and to face my reality.
It seemed as though I had stabilized at a medium range of around .06%. This degree of disease in my body is an "acceptable, and tolerable" amount of disease allowing me to live a full lifespan; whatever that may be. My oncologist and I had finally agreed that we would accept the stability, and be grateful for the strides that I have made. Not everyone reaches an undetectable state; stability is often much more important.
I was relieved to finally have made peace with the acceptance of MMR, and felt good about taking the elusive undetected goal off of my plate.
Wouldn't it just figure, that once I became comfortable with my decision, my very next PCR dropped! Just to taunt me, the PCR results came back at .025%; I am not going to lie.....I was super excited, super stunned, and could not stop doing the happy dance: I also wondered whether this was a fluke or a new trend.
Could Bosulif really get me there? Was this my new wonder drug? IS undetectable a new obtainable goal for me?
And here we go again!
It reminds me that Nothing is set in stone, and remaining adaptable is what truly is, most important.
Fast forward another six weeks; a new pcr was drawn to check for the BCR/ABL1 gene and here are my newest results:
DIAGNOSIS: International Scale Quantitative Reverse Transcriptase PCR for BCR-ABL1 Fusion
RESULT: Positive for BCR-ABL1 fusion.
Major Breakpoint Cluster Region (M-BCR/ABL1) IS%: 0.017%
Point. Zero. One Seven??? Really? I am amazed, shocked, and thrilled! It appears that Bosulif and I are frenemies! It is kicking cancers ass while wreaking havoc on my stomach and intestines!
The nausea and diarrhea are much, much improved, but there are still days! But NOW, those days have a bit more meaning and my brain is a bit more accepting of those side effects, knowing that great results are being achieved. I might just reach the ultimate goal yet!
CML certainly is a tricky little sucker!
I guess that the whole point to this "story" is that not everyone will reach an "undetectable" state and to assume that everyone will, is a bit unrealistic. So if you are new to this game, and you are not one of the lucky ones that seamlessly reach an undetectable state; do not fret.
It does not mean that you will not live a long and productive life. Undetectable is the perfect scenario, but that does not mean it is the ONLY scenario. Do not let an undetectable result for someone else ruin your day.
Instead, look for stability in your own results; no matter what your levels are. We are all different and stability in this disease is very important. Remember that this is a marathon, not a sprint, and remember that not everyone becomes undetectable, and this is OK!
BUT, also remember that things can change, and never give up hope. I am eight-plus years into this journey, and it truly is the first time that "undetectable" may be within my grasp. However, if that does not happen, that is OK, too.
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#chronicillness #bebrave #chronicmyelogenousleukemia #Bosulif #leukemia #lovemylife #cml #PCR #bcrabl #hopesanddreams #cmlspecialist #specialist #thrivingwithleukemia #livingwithcancer #nevergiveup
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Thank you. Im glad I stumbled upon this article. I was diagnosed in August of 18. By February I was undetected. Unbelievable and so excited. By end of may it was .001 detected. I was devastated. I even took a couple months off of work because my anxiety was thru the roof. I go back next week to see new results. Im still quite new to this but have a better understanding. Thank youReplyDelete
What meal do you take your Bosulif with? I originally took mine with dinner and always had GI issues - not severe but just enough to be a pain. Then my GP recommended taking my other medications (hypertension, cholesterol, etc.)in the morning so I just switched the Bosulif too. It was like being on a different drug. Even now if I forget to take it in the morning and take with lunch or dinner, I will have issues. But that's just my story. TKI's affect everyone differently.ReplyDelete
I know exactly how you feel.This Aug.will be 7yrs I was diagnosed with AML.I'm in remission!!Thank You God!!ReplyDelete