Wow, thanks for sharing.

The only time I heard about CML was when Casey posted in his blog some time ago. I am blown away how the experiences and treatment/meds in general can vary so much! I hope somehow linking to his post here can help him out if he decides to reach out to you.

Great to see the progress in treating it as well!

Thanks again and you are always #1 here, don’t worry about DML 🙂

He morphed into this person that require a spot on a plane. To me there are some mental health issues at work. Its like he became part of the airline in his head. Really unhealthy boundaries there

Thanks guys, I really truly do appreciate it…

It has been an enlightening time to say the least. I know my experience probably doesn’t reflect the general population’s because of my wife’s career. One of our best friends is an oncologist at a big academic medical institution and when I first got diagnosed I was texting her all the time. That probably wouldn’t be a circle I’d be running in if I didn’t marry into it. And while my wife knows about as much about leukemia as the three of us posting here, she is a tremendous advocate because she knows how the system works.

I feel very lucky for a number of reasons. We have excellent health insurance, I can’t even fathom the financial burden it would be without that. The quoted monthly price for Imatinib without insurance is >$20,000 (though it seems generally available for $400 on GoodRx.) I had to have my blood drawn a lot at first, etc etc. it’s daunting and it’s easy to see how the statistic about 42% of people diagnosed with cancer blowing through their life savings in two years happens. I also feel incredibly lucky that imatinib, dasatanib, nilotonib, and bosutinib exist and there are more coming down the pipe. Twenty five years ago CML was basically a five year death sentence now most people diagnosed live their normal lifespan. I won’t even get into the “am I going to live long enough for my son to remember me?” portion between finding out I had a leukemia and then finding out the specific one I had.

I found out about my CML incidentally when I went to the ER for something totally unrelated. In hindsight it’s a little bit of a “duh” that I had leukemia but at the time…. Oh I’m getting sick a lot because I have a toddler in daycare who brings home God knows what. Oh I lost weight because I started going to the gym 6 days a week (this really happened, I went from no gym to basically a gym rat and lost 50lbs over 8 months so it didn’t seem all that odd). Oh I’m just tired all the time because I live in the Upper Midwest and there’s about 4 hours of daylight a day in the winter and I’m just letting it get me down. Oh I stopped being ready to post “First!” everyday because my new job doesn’t require me to get up early anymore… I did scare about 4 of my friends into going to the doctor for the first time in years, so there’s that.

My outlook might be different if I was experiencing side effects like Casey, I don’t know. And with the full disclosure that this is self serving: CML can probably be treated well in the “community” as long as you don’t run into issues but if you do there are places that have institutional knowledge that can be very valuable in getting you over the bumps in the road, even if your local physician is offended. It’s a tough thing to process and the information is overwhelming. Just as an example: the two cancer centers I’ve been to don’t even use the same drug as first line treatment for CML!

I read this last night and I was like…..WTFing numerous times!

I liked the article because, well, it came from his daughter and it’s…family 🙂

Definitely different perspective, another angle I never expected to read.

Yeah, I knew about the reservations, she definitely went light on that…Heck, he lost the suit so that says something.

Not sure it got creepy…

The revealing detail was the loss of his son…I did not know that…I can not imagine!

What Sam said!

Thanks for going public with the report on your disease.

I worked with a man, now near 60 years old, who had and succeeding in overcoming a similar condition. I’m glad you have good counsel at home as well as at the clinics/offices/hospitals.

While we joke around a lot here, but my sincere hope is for your recovery. You’re not alone.

thats gotta be the saddest story of a male Ive ever read.

Yeah, I didn’t get to read all his posts in the 10 minutes, but I got the strong impression he was still on Imatinib which I’ve had oncologists at MD Anderson and The Mayo Clinic tell me to ignore the toxic warnings on, and I asked repeatedly because I have a two year old son. They’re just blanket warnings they give to all “chemo” patients as protocol regardless of the actual toxicity of the drug. I’ve got an imatinib tablet floating freely in my pocket right now as a matter of fact. So I was…. intrigued, as I said, by his post.

Also, I guess I should have thrown “First!” in that original reply.