Thursday, November 27, 2008

No Easy Answers

First, a Happy Thanksgiving to all. This year our family is joined by my mother, her husband, Bob, my brother Tom and his daughter, Gina, for the celebration. We will also be joined by a few friends and there will be 14 at our table. Susan has pulled this dinner together in the wake of a difficult week last week. She continues to amaze me with her endless energy. We will gather round the table this year and once again give thanks for all of you, your love and support, and the blessings of another year past. Thank you.

And now for the news on the cancer front. I met with Rifkin yesterday to review the Arkansas approach and to wrest from him his views of Dr. Barlogie. We decided I might do better by myself rather than bringing the troops (Susan, Catherine and/or Julia). A good strategy, but given the tenor of the meeting I do wish Susan or the girls had been there, rather than having to rely upon my impressions. The meeting was casual, informative, and nonconfrontational. First, Barlogie has yet to make a recommendation, as he awaits info and data from the bone marrow biopsies. He sent a letter to Rifkin and as Rifkin said, this is the most noncommittal he has ever seen Barlogie. He suspects he is a bit perplexed as I am doing quite well despite 3 1/2 years of treatment, but still have evidence of the disease. I confronted Rifkin as to why he obviously disagreed with Barlogie's very aggressive approach and in essence he thinks the overall chemo regime is very very hard on people, can lead to long term permanent impairments, and has not yet proven to extend life any more than a less aggressive approach. Admittedly he gets more people into remission, but Rifkin said the studies are too young to yet establish this approach extends survival. Rifkin does believe a heavier chemo regime is probably in order for me, primarily because of the resistance I now have to velcade, but would probably approach it less dogmatically, i.e., if I experience too many side effects he would likely moderate the doses rather than push me on through the cycle. He also thinks at least one more transplant is in order, and maybe a second with one of my brother's stem cells. But, he seems most interested in hearing what Barlogie's recommendation is and going from there. He wisely noted that if a cure had been established, they would all be using the same approach. But since there is no cure, there is no agreement on the most effective treatment. Rifkin is willing to work in any capacity I want, whether it be as primary doctor, consulting doctor, secondary to Barlogie or whatever. In fact he said if I decided I wanted to go to Arkansas and then came back, I would always be welcome back as his patient. So, the meeting took the edge off and we will know, probably no later than December 12th, what Barlogie recommends. I will then meet with Rifkin and decide how to proceed. For now I am on a drug holiday, and happy for that.

Best to all of you and Happy Thanksgiving.


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