Day 14 of CPI-0610

Still 12 pills a day, but the clinical research nurse, Aura Ramos says she keeps asking the manufacturer when they’re going to make a larger dose.

Today started with a wake-up at 6:30 a.m., and arrival at MGH of 7:35 a.m. The trip was amazingly smooth: a short delay at the Route 2/Route 16 junction (at Alewife Station) and at Soldiers Field Road. Total time: 40 minutes. Best possible travel time is 25 minutes.

David will have blood draws at ½ hour, 1, 1 ½, 2, 3, 4, 6, and 8 hours He also will have EKGs at 1, 2, 4, and 6 hours, just like Day 1. . Hopefully we’ll be on our way home by 4:30 p.m., just in time for the afternoon commuter traffic.

Here are the latest counts:

Date of Blood Draw (CBC)	White Blood Cell Count	% Blasts in circulation	Absolute Neutrophils	Hematocrit (red blood cells)	Platelets
9-Mar-15	5.40	30.3%	1.14	20.40	25.00
12-Mar-15	8.93	60.0%	0.54	26.10	19.00
16-Mar-15	18.39	56.0%	1.84	23.60	22.00
19-Mar-15	46.07	67.0%	4.15	21.20	24.00
23-Mar-15	42.43	76.1%	1.44	23.70	22.00
26-Mar-15	36.29	72.0%	2.18	20.00	23.00
31-Mar-15	18.62	72.0%	2.05	27.70	12.00
2-Apr-15	10.86	68.0%	0.98	25.80	12.00
6-Apr-15	4.91	40.2%	0.57	22.50	9.00
8-Apr-15	6.57	58.0%	0.20	24.50	9.00

However, the report of the bone marrow biopsy on 2 April 2015 is bad:

“Primitive cells consistent with blasts are increased and occur in sheets and comprise approximately 90% of the cellularity.”

On 20 November 2014 the blasts were 83% of the total cell count, ‘cellularity’, in the bone marrow; the leukemia is getting worse. The decitabine was attacking the blasts in the bloodstream but not in the marrow.

Thankfully David is feeling relatively well. He and Annie were able to visit R’el, Peter, Xiomara, and Andrew two weekends ago. They watched Andrew all day Monday while Xiomara worked and Andrew didn’t spend the day crying for his mother!

Jim and I enjoyed our trip to the Midwest. We stayed with Charlotte in Chicago and later with Annie in Madison, after her East Coast jaunt. We also drove with Matt to Crawfordsville, IN, where he works as an assistant director of admissions for Wabash College. A day trip to Columbus, IN, where Jim and I lived from a week after R’el was born to 7 weeks before Matt was born (1981 to 1985; Peter’s our Hoosier baby.), included visits with Jim and RaNae Shoaf, Larry and Annette Kleinhenz, and Loretta Green, who watched R’el and Peter each time I swam at the Boys and Girls Club. In southern Indiana the crocuses and daffodils are in full bloom. Back home again in Lexington, there are still some stubborn patches of snow on the ground and this morning I scrapped frost off my windshield. I trust spring will work its way north, slowly.

Looking back on my last two posts, I realized that the day we learned of the decitabine failure was the one year anniversary of David’s call to us from Korea, telling us he had leukemia. He started the ICP-0610 exactly a week later, the anniversary of his arrival at Walter Reed National Military Medical Center (WRNMMC. Remember Wrenmimic? See earliest posts). It’s amazing that he has survived for a year with one of the deadliest forms of leukemia, AML-FLT 3/ITD (acute myeloid leukemia, internal tandem duplication of the FLT3 gene, that is, a mutation of a gene in the bone marrow).

Today is the last day David can take hydroxyurea, because of the clinical trial protocol. The lower white blood count seen on 6 April 2015 is due to the hydroxyurea, which thankfully continues to be effective in lowering the white blood cells in his bloodstream. However, it doesn’t attack the leukemia production in the bone marrow, so eventually it will fail. We pray the CPI-0610 won’t fail. It’s a long shot, a very long shot, but still, it’s a shot.