Monday, November 30, 2009

Draining the swamp

I waddled my way through a quick perusal of all 300 plus abstracts on CLL from the ASH conference, and by the end, each one was starting to look to me like a Jackson Pollock.

New meaning to the term: abstract.

Time to stop.

CBC and IVIG tomorrow.

I will scan the material on ITP and transplants, digest it and hopefully use it all to build some sensible plans to get me out of this mess.

posted by Brian Koffman at 11:19 PM

1 Comments:

Blogger Terry and Linda Lee said...

Brian, sometimes it's scary to watch your journey because you can understand more of the lingo from ASH and you have been to most of the country's best CLL providers. It is unfortunate that they don't concur more. The rest of us have seen fewer specialists. It is so great that you share what you learn. Your journey is insightful and honest, which I appreciate.

It would be good to Fast Forward on some of these new options to see what comes of them. Alas, we are on the path of real time.

Have they done a repeat FISH on your blood or marrow? What are #Lymps doing?

On the positive side we have a smart friend in you who shares this journey and your choices and options.

My Terry has been stable. He's 62 now. Recently he got infections in his nostril. One looked like a cross between impetigo and a open cold sore. It resolved with bacitracin. It came again a couple weeks later. This time near to top of his nostril and made his nose red outside. It began to look like a fat boil on the tip of his nose. He's on a course of Ceph beginning the day after Thanksgiving. He had just a slight fever. Between CLL and Type II Diabetes it was clear to the on-call physician to treat. It is resolving well and he will complete the course of antibiotics.

His next oncology appt is on Dec 25th.

Right now he and I wonder if he could pass a physical for a job he's already casually interviewed for with the US government in Sicily. Our second son and his family live there. The job is on the naval air base where he works. Naples has military oncology or he could go to Germany or back to Ohio State for more onclogy options if need be, depending on how he does.

He has mixed prognostic indicators with negative being high CD-36 or 38 and trisomy 12 or 13 - it's been a while now. I feel rusty. His clone is considered mutated for the big positive finding. Repeat FISH after 3 yrs. showed no progression to other deletions. 2010 will begin his 7th year with the beast.

Anyway, he's been stable on no treatment. His onc is watching his platelets that dipped below 100 once, but went up again. His onc sees him quarterly. When platelets were dipping he had labs every 6 weeks. His #lymphs bounce back and forth between 30s and 60s. He has fought off infections more this last year than any other year and required only a couple courses of antibiotics in 12 mo. He works full time in Seattle, which includes a ferry commute. He usually stands in or near the outside for the short rides. He feels good and does some outdoor work in carpentry and loading firewood each week. He has fatigue, but it has become the norm. He gets plenty of sleep and eats a balanced diet with supplements.

It doesn't seem to me that this mostly chronic CLL should disqualify him. We love it there and miss the kids. Weather would be much kinder in Sicily than in Ohio where our other 2 married children live. Terry endured 6 yrs near them, but took the first job offer back in in the NW when he was between positions. Our milder climate agrees with us both.
Thanks for your detailed posts. Our hearts go out to you for the differing options and advice you have to sift through. Our prayers are with you too.
Linda

December 5, 2009 at 12:47 AM  

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