Pneumonia in Lunder 1092

David returned to Lunder Monday morning, Memorial Day. He hadn’t eaten anything for several days, was dehydrated and terribly nauseated. He had no appetite and severe pain in his throat. Dana, our favorite Lunder 10 nurse, who works weekends and holidays, started IV saline and some Ativan, which is very effective for nausea, (as well as anxiety and insomnia). The Ativan got rid of the nausea and knocked him out minutes after it started flowing into his vein.

Ours was an unscheduled visit, and the infusion room was full. Dana put us in the patient and visitor lounge and taped a sign on the door, ‘Lounge Closed’. Last May, late in our time at Walter Reed, there was a night when David couldn’t sleep. We walked down the hall to a lounge and he lay down on the couch. “This feels so good!” he said. The sweet nurse on duty let us stay, even though it was against procedure to have a patient sleep in the lounge. Such a simple pleasure, to get out of bed and nap on a couch.

In the Lunder lounge, David was quite comfortable. Dana said, as she worked, “I’m trying to keep him out of the emergency department.” She succeeded. He moved into room 1092 Monday afternoon.

David hadn’t taken his clinical trial drugs Monday morning. On Tuesday I arrived at Lunder 10 around 9 a.m., to deliver the refrigerated BYL719 study drug. That was unnecessary: Dr. Fathi stopped the MEK 162/BYL 719 clinical trial. The drugs were not lowering the white blood cell count and were probably causing the throat pain, nausea, and lack of appetite. It’s disappointing.

            Tuesday they took a chest x-ray to investigate his hoarse cough and discovered pneumonia. Later in the day they did a CT scan, which showed a large consolidation (not a good thing) in the upper right lung and little dots scattered throughout the lungs. Since a lung infection could be TB (tuberculosis), we all have to wear heavy-duty masks, which are hot and bothersome. But I certainly don’t want to either contract or pass along TB (or any infectious disease). It’s quite unlikely he has TB, but they must take precautions.

            At 5:30 p.m. this evening David was sleeping soundly. He was in good spirits yesterday, and sounded chipper on the phone this morning, but now he’s conked out. Yesterday afternoon he spiked a fever of 104°. When Jim arrived to visit, the nurses were busy applying ice packs in an effort to lower his temperature.

            R’el, Peter, Xiomara, and Andrew drove up from NYC Friday night for the holiday weekend. David enjoyed playing with Andrew and made some videos on his iPod. Happily, Andrew has decided to enjoy his Uncle David’s company, even when his mother isn’t in the room.

            Saturday night we watched a Captain America movie, Winter Soldier. R’el synchronized the start of the movie with Matt in Chicago. At our house R’el, Peter, and David sat at their laptops (as did Matt in Chicago) and messaged commentary as the movie progressed. I was content to just watch the movie. David did comment afterwards that he missed a bit of the action while typing and reading comments.

            The goal for now is to get David strong enough to come back home, one day at a time.

Low Energy

David had little energy or appetite this weekend. This morning his hemacrit was down to 19.9 (so he’s quite anemic) and platelets were at 8 (they are shooting for 40). The WBC is 6.77: David will stop taking hydroxyurea today and we’ll see if the study drugs can maintain the low WBC count.

Annie came by T to MGH; she arrived from Wisconsin at 1 a.m. She’ll visit for about 64 hours, then fly to China for a summer study abroad.

WBC Count: 6.92

            Good news on Thursday: David’s white blood cell count came down, from 29.68 Monday to 6.92. His platelets are down, but that’s probably due to the blood thinner he’s taking to breakdown the blood clots in his arm.

The hydroxyurea was lowered to 4 g/day. This morning he stopped taking it; we’ll see on Monday if the trial drugs are contributing to the drop.

            David also had another eye exam on Thursday. Presumably his eyes are fine, but they are keeping close track, since the drugs MEK and DYL can cause eye damage. Cancer treatment is not for the faint-hearted.

White Counts Down

            Two pieces of good news this morning:

1.      David’s white counts are down by half, from 53.54 on Saturday, 9 May 2015, to 29.68 this morning (11 May). (What are we aiming for? Between 4 and 10.)

2.      We got to go home before noon, since Dr. Fathi appeared early. (We were scheduled to see him at 1:20 p.m.) Since we got to Cox 1 at 7:20 a.m. for a fasting blood draw, that’s great news.

David continues to do well. He’s tired most of the time, but that’s been true for months. He is experiencing nausea, probably from the new clinical trial drugs, MEK and BYL. Since the nausea doesn’t last long, and it is over before anti-nausea meds would begin to work, he’s just living through it.

The white count news is really heartening. He is on 6 grams/day of hydroxyurea, but he’s been on 5 or 6 grams for a while, so we’re hoping this drop is due to the MEK and/or the BYL. Time will tell.

MEK 162 and BYL 719 Combination Clinical Trial

             Another long day at Cox 1. David started the clinical trial of two drugs, MEK 162 and BYL 719, that hopefully will work in tandem to stop the signaling pathway in the RAS mutation cells, which David has had since August. It will probably take a few weeks for any positive results to manifest (if they are successful), but, except for study blood draw days and bone marrow biopsies, he can be on hydroxyurea and stay in the study, which is a relief. Hydroxyurea won’t lead to remission, but it keeps the leukemia at bay for a while, where nothing else has been effective.

 MEK inhibitors have been used successfully in “solid tumor” cancers, such as melanoma and breast, lung, and colon cancer. This study is researching its effectiveness in RAS mutation leukemia, where the ‘tumors’ are the single leukemic white blood cells.

            For those of you with more biochemistry background than me, here’s an excerpt from the very short Wikipedia article:

A MEK inhibitor is a chemical or drug that inhibits the mitogen-activated protein kinase kinase enzymes MEK1 and/or MEK2. They can be used to affect the MAPK/ERK pathway which is often overactive in some cancers. (See MAPK/ERK pathway#Clinical significance.)

The hope is that the study drugs will change the “signaling pathway” where the signal for cell division gets stuck in the ‘on’ position. In some cancers, including leukemia, the cancer cells don’t get the signal to stop cell division, so they continue to divide uncontrollably and take over.

An observation about the effect of hydroxyurea on the WBC count, by comparing December to April:

The first time David’s counts skyrocketed, the hydroxyurea lowered the WBC count from 95 to under 4 in 7 days. The percentage blasts also dropped, from 76% to 44%.

Date of Blood Draw (CBC)	White Blood Cell Count	% Blasts in circulation	Hydroxyurea dose	Note on hydroxyurea dosage
2-Dec-2014	91.51	76.0%
3-Dec-2014	95.27	72.0%	2g/day
4-Dec-2014	76.39	75.0%	4g/day
5-Dec-2014	42.78	72.0%	6g/day
8-Dec-2014	8.20	59.0%		Lowered dose-WBC were down
10-Dec-2014	3.84	44.3%		Stopped hydroxyurea

However, in April you can see that the hydroxyurea hasn’t been as fast acting and only lowered the WBC counts below 11 briefly. The percentage blasts, after hovering between 69% and 88%, have increased into the 90s, even on 5 and 6 grams of hydroxyurea per day.

Date of Blood Draw (CBC)	White Blood Cell Count	% Blasts in circulation	Hydroxyurea dose	Note on hydroxyurea dosage
14-Apr-2015	66.95	74.9%	4 g/day	start 11 a.m.
15-Apr-2015	67.68	88.5%	4 g/day
16-Apr-2015	47.07	72.8%	4 g/day
17-Apr-2015	35.86	80.5%	4g/day
19-Apr-2015	23.55	84.0%	4g/day
21-Apr-2015	10.67	88.0%	2g/day	Lowered dose for lower WBC
24-Apr-2015	12.39	68.7%	4g/day	Up dose to tank up before  trial
27-Apr-2015	24.42	86.0%	1g in p.m.	Back on hydroxyurea after biopsy
28-Apr-2015	--------	--------	2g/day in a.m.	Off of hydroxyurea for clinical trial
29-Apr-2015	50.79	90.0%	4g/day	Hydroxyurea: trial postponed.
30-Apr-2015	42.27	94.0%	5g/day	Raise dose
1-May-2015	--------	--------	5g/day	Maintain dose
2-May-2015	53.72	91.5%	5g/day
3-May-2015	--------	--------	6g/day	Raise dose to "tank up" before trial
4-May-2015	43.88	94.0%	6g/day	Took dose in p.m., after study started

            In other news: Matt visited for the weekend, which put us all in a good mood. He successfully kept Jim, who turns 60 this week, occupied in his coachhouse office behind the house, so that I was able, with some much-needed help from Autumn, to make a meal and quietly get 24 people into the house to yell “Surprise!” when he and Matt came through the door. Jim’s brother, Jeff, wrote a song, “Now You’re Sixty and More” to the tune “When I’m 64”, which was my class song at Bryn Mawr. An unforeseen complication was that no one under 58 knew the song (come on, people! It’s classic Beatles!), but our friend Sam saved the day by pulling it up on his phone for our quick rehearsal.

            Jim was totally surprised, which was gratifying. He was out of town last week, so I had time to bake the cake and cook the pastry cream for Boston Cream Pie. While Autumn made our canonical mac&cheese, I made the chocolate glaze and constructed the pie. As a new way to serve it, I made extra pastry cream and chocolate glaze, so we had cake topped with extra cream filling and chocolate glaze plus vanilla ice cream on the side. Hope I can still get into my dress for Sam’s wedding.