Easter

Two years ago

April 2015 was rough. I was still reeling from the devastating disappointment of the decitabine failing, when David started a clinical trial of the experimental drug CPI-0610. Yeah, so experimental they hadn’t even given it a proper name. We spent the first day of the trial in the clinic for 8 hours: 4 EKGs and 8 blood draws.

CPI-0610 was so new the manufacturer was only making it in 25 mg pills, so David had to swallow 12 large capsules each morning.

On Sunday, April 26, we all went to dinner at the Bements. David played with little Eli; he was always very gentle and relaxed around young children. Eli loved him; they developed quite a rapport.

Easter 2017

What with our trip to Italy and getting ready for Patriots’ Day (we park between 40 and 60 cars on our acre lot, I bake six large breakfast casseroles, and we host a breakfast for all comers (usually between 100 and 150 people)), I didn’t take time to think much about Easter. The Easter program at church was lovely; I sang in the choir. Sixteen-year-old Bella, a young woman who moved here from Brazil with her family a year ago, gave a sweet talk.

The Friday after Easter, I happened upon a journal entry I wrote a year ago. At the time, I was in great pain. And then a well-meaning friend greeted me on Easter Sunday: “Oh, Mary, this must be the happiest Easter for you, knowing that David will be resurrected.” No, it wasn’t; it just plain hurt. Badly.

So this year, without planning it consciously, I let Easter slip away without much fanfare. I’m not in deep anguish, but I don’t feel like celebrating. I trust that next year I’ll have healed even more. For now, I’ll accept that the past two Easters has been hard holy days.

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.

CPI-0610

                      Well, not a memorable name, that, but hopefully a memorable and successful clinical trial. The study protocol just changed and the dosage increased. Funny thing: the drug is so new the manufacturers haven’t started making higher dose capsules (25 mg is the higest), so David will be taking 12 capsules of unusual size every morning.

            A not-so-funny thing: here’s the warning in the description: “In case of contact with the powder: wash skin immediately with soap and copious amounts of water for at least 15 minutes. If in eyes, rinse with copious amounts of water for at least 15 minutes.”

Here’s the study description of the drug:

CPI-0610 is a small molecule inhibitor of a group of proteins called BET proteins. By blocking BET proteins from binding to certain cancer-causing genes, CPI-0610 may result in these genes being deactivated (switched off). CPI-0610 has shown anti-tumor activity in previous laboratory studies.

(By the way, technically, individual leukemic blood cells are ‘tumors’. The name isn’t exclusive to solid masses.)

            The cycles are 21 days long. He takes the capsules for two weeks, then has a week off (of pill taking; he’ll still visit clinic twice a week). In this first cycle, he’ll have his blood drawn on Day 15 through 19. (Actually, he gets Sunday off.)

Today, Day One, we’ve spent the whole day at the clinic, from 7:30 a.m. to 5 p.m. There have been blood draws, after the first daily dose, at ½, 1, 1 ½, 2, 3, 4, 6, and 8 hours and EKGs (electrocardiogram, which measures electrical activity of the heart) at 1, 2, 4, and 6 hours. The portable EKG machine comes right to the room, so we’ve stayed in room 138 all day. Actually, midday I took the T to Harvard station and walked to the Cambridge Public Library to pick up a score of the Brahms’ German Requiem. We’re attending a concert on April 11^th and I want to learn the music better. I then walked down Broadway from the library to Kendall (the MIT stop). I was going to walk across the Longfellow Bridge, but it started to rain, so I bailed and took the T across the Charles River.

Tomorrow, Day Two, we’ll come in the morning for a blood draw at the 24 hour mark (plus or minus 3 hours, a comfortable window).

            From MGH we’ll drive to Logan airport and pick up Annie at noon. We’ll spend the day with her. Saturday Jim and I fly to Chicago and Annie and David drive to New York City to visit R’el, Peter, Xiomara, and Andrew. David gets a reprieve and doesn’t have to come back to clinic until Tuesday.