Saturday, July 27, 2019

Last Night was TOUGH!

Dang! What a night! I took my first dose of 200mg of Bosulif with a half of a tuna sandwich, a bowl of cantalope and a small glass of milk. All was "good" and "normal" until about four hours later.
The nausea began, and I promptly took three drops of CBD under my tongue, which almost always works, and waited. The nausea got worse, the stomach pains and diarrhea began.

After about an hour, I took 4mg of Zofran; it took an hour before it even began to touch the stomach pain and nausea, not to mention the diarrhea!

By now I am convinced I must have stomach cancer, or pancreatitis, or something other than typical side effects from Bosulif. That would be my hypochondria kicking in, but my logical self knows better!

Praying that I can sleep, and will be "all better" by morning.


This pain, nausea, diarrhea cycle lasted eight miserable hours. Today I feel as though I have been run over.

What the heck was that all about? Was it a side effect of Bosulif? Was it something else? I had no fever.

I hate that being in constant treatment makes all things seem worse than they probably are and I hate that I NEVER know if what I am feeling is a true medical issue or just side effects from my medication.

Of course, I am terrified to take another dose of this life-saving medication, BUT I will since I did not get my second dose down the hatch last night.

I am keeping my fingers crossed for a more "normal" type day; mild nausea, no stabbing stomach pains, and little diarrhea!

Blek! The life of chronic cancer can be SO much fun!

To add to my "pain" I am scheduled to attend Epic Experience on Sunday. Epic Experience is a cancer camp for adult cancer patients and I have so been looking forward to attending.

Now I am feeling a bit fearful to travel to Colorado, in the mountains at 8000 plus feet. I hate that cancer does that to me, and I am praying for a better tomorrow, to gain the confidence to throw caution to the wind, get on the plane and head off to an adventure of a lifetime.

Wish me luck!

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#chronicillness  #sideeffcets  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #cancercamp  #cmlspecialist #epicexperience  #thrivingwithleukemia #livingwithcancer

Wednesday, July 24, 2019

Do You Get Discouraged if Your PCR is NOT Zero?

I have been battling CML since February 2011. During this time, my PCR has jumped around quite a bit, even testing twice as undetectable. The coveted "undetectable" results were likely just a fluke or lab error, as they were not consecutive, nor consistent.

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.

Eventually, I realized that my new "goal" had changed and was no longer to become "undetectable", but to achieve MMR, also known as a Major Molecular Response This meant that my PCR result would have to be below .1%. This took quite a few years before I actually "stabilized" below the desired .1%, but I am pleased to say that even though my PCR results tend to bounce around, they have remained below the .1% mark,  for years now, and that was OK by me.

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.

Fast Forward:

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!

Because of the latest test results, my next doctor appointment conversation was a bit different than the last one; it revolved more around the new possibility of once again reaching an undetectable state. And wouldn't it just figure! Just when I am ready to accept my truth, my truth changes, proving that nothing is black and white. Life is full of ups and downs and twists and turns, so I will just enjoy the ride!

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.

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #PCR #bcrabl #hopesanddreams  #cmlspecialist #specialist  #thrivingwithleukemia #livingwithcancer #nevergiveup

Bricks for the Brave!!