The Biggest Mistake Patients Make

The Biggest Mistake Patients Make

This is a link to an interesting post.

Even doctors are not immune to thinking anecdotally. Our personal mistakes and successes inform our future decisions and the advice we offer more than we might admit. It can be easier to remember a particular patient than a bunch of statistics.

One caveat: statistics are always blended data. Rare indeed is the CLL study on 57 year old females with exactly two prior chemo-immunotherpies who now needs treatment for enlarged nodes, but whose counts are good.

More likely we will see a study that takes all comers whatever the age or gender or indication for therapy. Maybe the trial only accepted those who have relapsed or who are under 65, but whether is a statistic or an individual, we need to assess carefully how similar their situation is to ours, and then discount or value the information accordingly.

We are always making decisions with imperfect knowledge. Knowing how to weight the value of what we do and don't know can help.

Sharing Our Stories

My post on the ACOR CLL blog:

This old school online community cancer source has been a life saver for me and many others

Friends.

Recognizing the value of the longevity stories, I thought it might be helpful if some of us shared an executive summary of our CLL journeys from which others can learn. The group is there to answer questions from like travelers in times of need, but it is also valuable to know some of the twists and turns others have negotiated that has lead to good and bad results.

I'll start the ball rolling.

Diagnosed almost 6 yrs ago at age 54 with swollen nodes and a very slightly elevated WBC. Bad prognostics: 11q del, unmutated, ZAP70 +, CD38+. Saw Kipps at UCSD and Rai at LIJ. My WBC counts rose slowly but my CLL quickly grew in my nodes and even a big beard couldn't hide the bulges in my neck. 1 year after diagnosis, I noted petechiae on my legs and found that I had single digit platelets from ITP. That was the first of 5 times in the hospital in < 1 yr with very low platelets.. Very scary times. Failed steroids, R, IVIG, and an emergency splenectomy. Finally the combo of Cyclosporin and Rituximab worked and also unexpectedly shrunk my palpable nodes, cleaned out my marrow and normalized my counts. Had a perfect match from Israel, so I had an early reduced intensity (FCR) allo-transplant July 1 2008 at City of Hope, but lost the graft, likely because I was too healthy from the lack of long term chemo pre-transplant. My CLL was back in 6 months (in the nodes first) and ITP was back in a year, currently controlled with my old friends R and IVIG and cyclosporin. The later is hard on my BP and kidneys, but it beats the alternatives. No infections, no anemia, no reactions, no other problems.

That's my story and I am sticking to it.

During all this I have walked my daughter down the marriage aisle, and am now expecting our first grandchild. Last week I said a final goodbye to my father. (It was not clear when I was diagnosed who would pass first) . We have traveled to Australia, New Zealand, China, Japan, and all over Europe and North America in several trips. I have been forced to redefine my career from a practicing MD to a teaching MD, a gratifying change. I enjoy every minute of life and put little off to the future.

Life is sweet. As someone said, if it weren't for the downside, and the downside is enormous, everyone would want cancer.

Please share your stories if you think this is a good idea.

We are all in this together

Brian

bkoffman.blogspot.com