Well, I now know my dance partner. More on that in a minute.
Today's big surprise was that Robbie didn't have school. Liz was dropping him off so she found out first. I took custody around 11:00, and took him with me to the oncologist's, where Liz was meeting me.
We decided to bring Robbie into the appointment, where he was an absolute angel. It was a little surreal bringing my 5-year-old son into meet with my oncologist. At one point, as we were discussing particulars, Robbie looked up and said, "Daddy, I'm sorry you have a cold." Sweet. Anyway, cutting to the chase...
The unequivocal diagnosis is CLL--chronic lymphocytic leukemia (Apparently, the same disease as diffuse small cell non-hodgkins lymphoma, but the acronym is much easier). It's in my lymph system, my marrow, and my bloodstream. I wouldn't be surprised to hear it's in my breakfast cereal.
Today's diagnosis doesn't change the treatment plan, but it does add a bit (but just a bit) of urgency. I have an abnormal protien called ZAP 70 that indicates that of the varieties of CLL, this is a more aggressive version. Dr. Fritz said "This is not horrible news", but does define a little better what we're dealing with.
He is suggesting a chemo treatment known in the business by the acronym FCR, which refers to the medicines that are used. This is apparently not particularly vicious as chemo treatments go, and I may even get to keep most of my hair (although I may shave it just for the sympathy).
I'm still going to wait until I see Dr. Cheson at Georgetown and do some more of my own research before I make a final decision on treatment, and Dr. Kelly thinks this prudent. If Dr. Cheson also recommends FCR, I'll strongly consider doing it here in Southern Maryland.
Robbie and I came home, played some golf in the front yard, and just returned from a walk on an absolutely beautiful day. I am blessed.
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Fludarabine, cyclophosphamide, rituximab (FCR)are old friends of my mother, Tim, who has CLL and I'm happy to report has had it now for 17 years.
ReplyDeleteSo she'll be thrilled to share with you her experiences and no she didn't lose her hair, so yes, I guess you'll have to shave your head!
Isn't a great feeling to now know "who your dance partner" is.
Hi Tim,
ReplyDeleteI found the URL.
Hmmm, Foxtrot Charlie Romeo - Fleet Coordination Region. I feel like I know the folks that name these medicines. I hope it works real good.
When my Dad was sick last time, he had a friend, Bob Urban, who he'd met at the oncologist years earlier on a different cancer. I hope you make new friends at the oncologist because they can come in handy in the outyears. Bob is still a prince and a close friend to the family. - Pat
Hi Tim,
ReplyDeleteI worked with you at Wyle (Dave's group). My mom was diagnosed with CLL a few years ago but her's is more at a domant stage and hopefully will stay that for a long time. She's been keeping her diet at the right alkaline level which she's noticed through test results is working (she doesn't tell the doctor this). She will send me what she takes and maybe you should look into it. I also know a lot of people who work with natural medicine if your interested. I've seen wonderful results from natural medicine and who knows what it can do.
Take care of yourself and let me know if there's anything I can do!
Julie Butler