Time to show Tasigna the door

For the first time in 603 days I woke up and didn't take my Super Dangerous but Absolutely Necessary chemotherapy pills.
Feels reckless.
I take Tasigna, twice a day, every day, because I have Chronic Myelogenous Leukemia (or CML). And I will take oral chemotherapy pills for the rest of my, hopefully, long life. That's why I feel so reckless.
I got some labs back that are not so good. The level of BCR-ABL (the protein that enables the leukemia to grow) in my blood is rising. And over the last few months, has spiked.

The first number is at diagnosis. Below the Red Line is the goal. 

So, my local oncologist and my CML specialist in New York had a meeting of the minds and I will be transitioning to a new drug.
My oncologist actually gave me a "title," if you will. He said he's never had a patient fail on a drug as fast as I failed on Tasigna. Awesome.
Time to show Tasigna the door and switch drugs. It's a good thing. Tasigna isn't doing the job anymore. The side effects are no party, either. Awful bone pain. Nausea. Fatigue (hate that word - it doesn't do justice to the extreme exhaustion that is fatigue). Rash.
Possibly, I will feel better on this new Super Dangerous but Absolutely Necessary chemotherapy pill.
It's called Bosulif. Here's the tagline about the drug:

BOSULIF is a prescription medicine used to treat adults who have a type of leukemia called Philadelphia chromosome–positive chronic myelogenous leukemia (Ph+ CML) who no longer benefit from or did not tolerate other treatment.

It has different side effects.  One being diarrhea. Headaches. Edema. Fun times. But not everyone experiences that. Maybe, maybe I will feel great on this drug.
I'm scheduled to start the Bosulif in a few days. The transition plan is to stop taking Tasigna and get it out of my system before I start the Bosulif.
But it sure feels like I'm being reckless.
At the end of my appointment, my oncologist looked me dead in the eyes and gave me the Gang of Four speech again,

Air. Water. Food. Bosulif.
That's it.

Am I afraid that I failed my first drug within the span of 2 years? Yes.
Am I afraid that this drug won't work? No. I think it will work and will work fast. I think I'll be back below the Red Line in no time.
I know God's got this under control. I just have to be still.
"Be still and know that I am God," Psalm 46:10

No mutation detected

A watched pot never boils. Think that's really true? It has to boil eventually. I guess watching it makes it seem like it's taking forever.
Forever is how long it felt while waiting for my mutation and resistance testing to come back. 

The refrigerated kit arrived March 17.

OOH, biohazard bag.

The vials lived in my fridge for a week.

The vials with my blood a week later.

My blood mixed with the magic solution.

My blood added to the magic solution.

Off it goes.

I found out yesterday - 2 weeks after my blood travelled to the west coast - that the lab results were back all the way from Oregon. But they wouldn't tell me the results because the doctor needed to go over them.
Talk about stress. That was a long 24 hours.
I got word this afternoon, just after lunch.
NO MUTATION DETECTED.
Sigh.
I feel the weight lifted off my chest. No mutation detected. Very, good news.
But what does it mean to my treatment? Why are my Super Dangerous but Absolutely Necessary chemotherapy pills not working? Not sure yet.
I will find out next week. I'm still waiting for a heart test, as well. 
No mutation detected. 
I feel I can exhale now. For 3 weeks I've been living with my "What if" brain.
What if there's more than 1 mutation.
What if my body can't take the new drug.
What if the new drug doesn't touch the mutation.
What if ...
I know my fight against CML is far from over. Having a resistance to my Super Dangerous but Absolutely Necessary medicine is not a good thing. I'm sure it means there will have to be changes. Changes in treatment. Which means changes in side effects (yuck).
No mutation detected.
Today, I'm celebrating this little victory. 
And I'll keep fighting.

I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.Philippians 3:14

The Red Line

My crazy, awesome family having Thanksgiving dinner.

I've been on pins and needles over here for the last month. 

I've felt pretty good lately. Actually, I've felt just good enough that I have to remind myself to slow down. To take it easy. To remember, I do actually still have cancer.

Every three months my oncologist runs a test that measures how much of the Bad Protein (BCR-ABL) is present in my blood or bone marrow. And, depending on the level, it's a good indicator of how well the Super Dangerous but Absolutely Necessary chemotherapy pills are working.

Since June, my levels have started to creep up. And in September, the level actually crossed back over the Red Line.

This magic Red Line represents MMR or major molecular response. At the beginning of my treatment for CML, the goal was to be at or below the Red Line at my 1-year mark.

So, you can see why I've been nervous, waiting for the proverbial other shoe to fall. What would my oncologist do if my BCR-ABL didn't fall below the Red Line? Change my dosage (again)? Change my medication? Yuck.

I was worried for nothing. I'm so proud of this little graph. 

The drugs are working. Wow. One year later and I'm right where my doctor wanted me to be.

The Caregiver and I just kind of stared at each other. 

Disbelief, I guess. Thinking the other shoe was going to fall and actual surprise when it was my BCR-ABL level that fell. 

Then I jolted back to reality.

"This awesome result doesn't mean I'm supposed to feel awesome now, right? Because I don't."

He seemed to hold back a smirk.

But then, being the compassionate one, told me like it is.

"He said you've hit MMR. You still have leukemia."

You still have leukemia.

The words kind of hung in the air.

You still have leukemia.

"Now it's about managing your side effects and finding your 'New Normal.' You're still going to feel shitty sometimes. Now you just get to feel shitty while staying alive for longer ... a lot longer."

We laughed.  I can be kind of high maintenance. I know that comes as a shock to you all.

Below is my beautiful masterpiece entitled Red Line. Enjoy.

This graph represents the levels of the Bad Protein (BCR-ABL) detectable in my blood/bone marrow. At diagnosis (Oct. 2013) it was 73.37%. As you can see, it plummeted, then began to inch back up. I didn't expect to get the 0.025% reading.

6 month report

Every time this package comes I get sad. My Super Dangerous but Absolutely Necessary chemotherapy pills arrived again this week.

My Super Dangerous but Absolutely Necessary medicine.

I need to get used to it. I'll probably be taking them for the rest of my life. 

There are some clinical trials right now where CML patients who are doing amazing are being taken off their meds. It will be exciting to see what happens for them. Will the cancer come back? Will it mutate?  We don't know yet. 

What we do know is Tasigna, my Super Dangerous but Absolutely Necessary chemotherapy pills, WORKS. 

I got my 6-month labs back.

When I was diagnosed in October,  labs were drawn every week. My oncologist checked my counts - white blood cells, red blood cells, platelets, etc.
My counts reached normal values (values for people without leukemia) within 3 months. Great results. My medicine was working. And even though I didn't feel normal, my lab results said I was on my way.
Tasigna works by searching for a protein in my blood (a protein created by the blood cancer) and zaps it. Well, it's WAY more complicated than that. But that's how I can wrap my brain around how it works.
The American Cancer Society has a good scientific explanation of how Tasigna works.
At diagnosis, my oncologist measured how much of the BCR-ABL fusion gene is in my blood. It's measured again at 3 months, 6 months, 9 months, so on. The goal, my doctor said, was to reach a BCR-ABL value of 0.073 at the 1-year mark.
I'm at the 6-month mark and I'm already at 0.022.
I can't believe it!

Actually, I didn't believe it. I called my doctor's office to get it confirmed.
Boom! Just call me The Giant Slayer.
Everyone has giants they are fighting. Leukemia is but one of the giants I face. My pastor, Stu Hodges, at Waters Edge Church said Sunday we already have everything we need to fight the battle and win the war.
Focus on God, not the giants.
Max Lucado says it like this:

Focus on giants - you stumble.
Focus on God - your giants tumble. 

For now, I continue taking Tasigna, managing side effects, praising God and slaying giants.