Friday, August 19, 2011

New York City

Returned last weekend from our trip to NYC. Saw Catherine finish her second triathlon. Very cool. Had tentatively planned much more than we were able to do. Rifkin got nervous about my being gone and arranged for me to be seen at Sloan Kettering by my doc from MDAnderson who moved to Sloan last year. Ended up making four visits to Sloan, including a platelet transfusion, forcing us to cancel some plans and not follow up on others. But, true to form, once John Sadwith heard of my vacation being spent at Sloan he and Friends of Dan (FOD) came through at the last minute with tickets to The Book of Mormon---the most hysterical musical I have ever seen. John and FOD are incredible. These tickets are impossible to obtain but John knows no limits. Susan's cousin, Arlene, and her husband Jim, drove down from their home up on the Hudson to pick us up at the airport, watch the triathlon, and then came down to take us to the airport when we left. They have been fantastic.

We talked with my former doc at Sloan about treatment options. He agrees with the plan to put me on carfilzomib. Unfortunately, he didn't have any clear ideas about a plan B. He noted that there are a number of drugs in the works, but we know how slowly that process moves. I've been waiting to get on carfilzomib since early June when it supposedly was fully approved for my use. Rifkin thinks maybe by the first week in September all approvals will be in. Meanwhile, I've been taken off vorinostat and am just on velcade and prednisone. Not sure how this is working, but suspect not too well. The IGGs were rising before I went off vorinostat and I'm getting blood or platelet transfusions every 5 to 7 days. Before starting carfilzomib I'll have to go through the full battery of tests. I think I would prefer not to know the details of what is happening in my bone marrow.

I've signed up for Light the Night again this year. It will be held on Thursday, Sept. 22, at Wash Park in Denver. As noted earlier, Darin and Liz Schanker will be hosting a prewalk party at their home (see blog at July 31, 2011). We would like to see a good crowd at the party and at the walk. You don't have to donate to join us for the festivities. If you're interested in donating, however, here is the link to my fundraising page:

I'm sure you're all tiring of my fundraising over the years. I have to emphasize that the research that the Leukemia and Lymphoma Society has funded over the years for blood cancer research has been critical in the development of a number of drugs that have kept me alive, including velcade. Most of you know what my family and I have gone through over the past six years. Your small donation would be a small price if we could save even one family from the trauma of a blood cancer.

I hope to see you at the walk on Sept. 22 (prewalk party at 5:30, walk starts at 7 p.m.)
Darin and Liz would like some idea of how many people to expect for the prewalk party, so if you're planning on attending, perhaps you would send me an email indicating your planned attendance: I'll post Darin's address once I get it.


Thursday, August 04, 2011

A Quick Update

It seems that I no sooner posted my last blog when things changed. Briefly, saw Rifkin today. It seems the new regime is not working as the IGGs have moved up to 7500. Still waiting for the final regulatory approval for my use of carfilzomib. Rifkin is calling them regularly to get them moving and has been assured his clinic is a top priority, but so far the FDA hasn't finished their review of the facility. Rifkin also became a bit nervous about my trip to NYC and called Memorial Sloan Kettering and immediately got in touch with my former doc at MDAnderson, who is now head of the Sloan transplant unit. Anyway my old doc was most gracious, agreed to bring me in as a new patient, check my blood counts, and see me, transfuse me if necessary and share any ideas he has for treating me. I certainly can't complain about the way my docs are treating me and in fact, am most grateful. Anyway, we're still on for NYC, although in keeping with my schedule here in Denver, I'll spend some of the time at the hospital. That travelogue of the best cancer centers in the U.S. seems to have real potential. This will be my 5th facility. One more achievement I never had aspirations for.