B is the word.

By , on January 26, 2012

C Word

Soon be over.  OK, don’t get excited.

In last week’s episode readers may recall that I was headed back to SCCA for yet another platelet check, to see if I could get my next dollop of TRU-016. Despite the #goodplateletthoughts from my army of Twitter followers, my counts were even lower that day than they had been earlier in the week, so no treatment again. So much for social media being an agent of change. The good news, more or less, was that it was deemed OK to get a platelet transfusion to try to bring the number up enough to let me pass. My hematocrit was also low, at 24, so more red cells were also on the menu. On Sunday (Jan 22) I went in and got the double dip of blood products. Afterward as a treat I went to the Columbia City Bakery which I think is the best in Seattle.

On Monday I went back to the clinic again, for another blood draw (and another IV placement, just in case), and another round of numbers. Alas, even after getting a bag of platelets (which, I have to say, are a rather unpleasant brownish color, unlike the rich crimson of the red cells) my count didn’t go up at all. This is rather mysterious, and rather disappointing. We decided that I should see my oncologist that day to figure out what to do.

My oncologist is a busy guy, and like everyone else in Seattle was trying to get back on track after three or so days of forced leisure due to the snow and ice storms of the previous week (which in many parts of the country would have been called “a break from the bad weather”). So Eve and I weren’t surprised when he was an hour late for our 3:30 appointment. I was so stressed I fell asleep.

When he arrived, after a little discussion we agreed that it was time to give up on the clinical trial. The treatment has been working though we don’t know which of the agents is doing the trick. But we’ve tried what we can to get my counts in the right place to continue and it just isn’t working. Maybe we could ask the trial sponsors pretty please this time, but the whole course would be another three months of treatment, and it seems unlikely that my blood problems would get any better. And beyond the low platelets, which isn’t really a problem in daily life (the counts would have to get a lot lower to be a serious bleeding risk), the fatigue and achiness that come with low red cell counts are not something I want to live with indefinitely.

So, that’s it: no more trial. That phase is over. It’s a little sad to move on. I’ll miss the cushy service in the Clinical Trials Unit. We’ll hold off on any more treatment for a while to see what happens. I could resume taking Bendamustine and Rituximab at some point. Down the road, as always, there are many other potential therapies, both those already in the mainstream and new things still in trial. In the meantime I will probably have another bone marrow biopsy to see what might be going on in there.

On to the next adventure.


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