Thank you Kerk for your inquiry.... You are a nice person.
A compassionate Human Bean. Aren’t we all. Human Beans?
What the hell is a Human Bean?
Let’s move on...
Romo is doing fine. I have been dabbling in the Ether this year.
I set my clock to remind me tomorrow.
“What time is it? “ I think it’s Tuesday”...
‘Why do today what you can put off until tomorrow...
..I retired!... I went on a 4-State road trip to visit cousins,
siblings, ants and nemesis. My how they have aged.
Like a bucket of rolling dice. Everyone ended up not where they
thought they would. But all is good. We all know what I said.
I’m older and wiser now. I am an amateur guru. In my mind
The most important real-estate.
DX 3 years ago. MMR @ 5 months, Talked to Oncologist
about lower Dasatinib @ 100mg to 50mg...
I was told’.. “ Do you know what ‘Fat Chance Means?”
As my Doctor was walking out of the room, with his back
facing me he said, “ Corporate policy”.
That’s when I became my own Doctor.
I researched and read every thing the Internet had about CML.
I dug deep into layers of pages that google offered. And every place else.
I learned that CML is Heterogeneous. Patient specific.
I learned that a busy cancer clinic has little time for a CMLer.
Everyone in my clinic has a cancer more serious then me. I feel lucky.
I learned that CML is no longer being researched except for existing
patient cohorts. Or obscure doo dad’s here and there.
It’s a done money maker. We have the treatment. Expect little progress.
The cure will come happenstance.
We are the pioneers. We are in the foray. It’s our information that will
drive this science. We will improve the therapy with our shared
We are the doctors.
I started to break my pills in half at 6 months and MMR.
One year later I now break my pills in thirds. I have been undetectable
for 1 1/2 years now. Don’t ask don’t tell. I am my own Doctor.
I like my clinic, it’s convent. I only need them for prescriptions and labs.
We are in a high risk game why not take a chance. Push the barrier.
It’s my life. I am responsible what I put in my body. My choice.
We need to work with the tools we know.
TKI’s work, Find the right one, Find the lowest Dose,
live your life. Treat your side effects. It is difficult. It was for me.
There is a lot of good advice here. I know. It’s helped me mucho.
Your CML is yours. Own it, Control it. Fight it, win it.
I think about you people all the time. You are my tribe.
There is always some luck involved. That’s the way the ball bounces.
You can still have kids, you can still work, you can still be fine.
...Fine enough. Some people have a more difficult time. I know that.
Our inside army is at war with our body. And mind. It’s not fun. It’s our
Share your stories. We are in the same experience.
We will be our own Doctors. You’ll see. We will know what works
before guide lines are established. We are in a CML trial now.
The biggest one ever.
We are a lucky group. The is no better success story for cancer
I need to go practice my meditation now. Being an amateur guru is hard.
Lots of competition out there! Younger Gurus with crazy ideas. What!
P.S. Kirk, please ask the people here for my private email.
I hear you are a Pacific Northwester. So am I.
I think Sasquatch is real but I do not believe in Bigfoot.
Know what I mean?