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Romo, Romo, where(fore) art thou Romo.


I’m really sorry you may have felt unwanted here. Nothing could be farther from the truth, I have really enjoyed your contributions here and you have given a lot of people great advice. 

If it was something I said, I am sorry - please forgive me. If it was not me, I am sure they meant no harm either.

You’re always very welcome here.


We want Romo; We want Romo - please come back from Xitar

I've found a news report about the Xitarians -

They know how to cure leukemia and Romo hasn't been cured yet.  Ipso facto, Romo is not a Xitarian and hasn't been visited by them yet.

Wait a minute, maybe he has been abducted. We haven't heard from him for a few days.  If he has been abducted, I hope they don't keep him too long because I miss him.

I miss you too, Romo. Hope you will come back and continue posting.

Hey Romo 

I went looking for you on the LLS site but no luck. Your comments always made me smile . What a valuable gift . Please come back here. 

Best, Louise 


I have a new theory on Romo.  He has ghosted us.  Boo!!! crying

I still miss Romo's witticisms. sad  I'm glad that he hasn't deleted his old posts. cool  What would be really cool is if he would pop in once in a while just to say hello.  yes

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.

CML updates.

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
own burden..
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
then CML.

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?

So happy to hear from you Romo. I am very happy you are doing well. And doing lots of travelling. I think that is good for the soul :) 

I also haven't been on here for a while but got the alert you had been in touch :)

My husband is doing well although life does deliver shocks at times. A week after celebrating reaching .0000 and undetectable in mid April, he lost his job, completely out the blue. Horrible for anyone but when you are immediately paying $2500 a month for Cobra, there is an added financial anxiety. Unbeknownst to me, he immediately cut his Sprycel dose  by a third, taking 40 mg a day and holding back one 20 mg tablet daily so he would have a back up supply in case he was out of work a long time and we could no longer afford the Cobra. He also wanted to be at his sharpest for interviews. 

Very fortunately he was able to get a job after 2 months and health insurance kicked in on day 1. We were so happy and relieved but at his ABR check up (after that 2 months of being on a dose of 40) his ABR had shot up from undetectable to 0.1. His oncologist got in touch really concerned. My husband told him the truth and he was very compassionate and relieved. One month back on 60 mg his levels are back down again, tho not back at undetectable yet. So I guess for him 60 is the dose he needs right now. It definitely scared us out of any sense of complacency. 

best wishes to all, Louise 


Awesome!  Thanks for checking in and filling us in on your exploits.

What a nice surprise to see a message from you this morning. We missed you! I’m really pleased to hear you are doing well.


Don't be a stranger anymore Romo - your insights, humor, and compassion are needed by all of us

Romo's back! Very cool.

Spot on about CML, doctors and the rest.