REGN4018: Infusion-Day Schedule (Patient Perspective from Week 5)

Week 5 (Cycle Four) / Full dose (150 mg.) of REGN4018 as an out-patient (for the 1st time)

Last week’s treatment was held because of high liver counts and it was probably for the best because I also needed a blood transfusion and had an infection. So, even though it’s the fifth week I’ve been on the trial, it’s the fourth dose of medicine. For patients who might be in this trial (or those who love us), here’s a sample of what an infusion day is like:

4:45 a.m. the alarm goes off. Let the dog out. Coffee. Get dressed. Feed cats dry food. Pack up infusion day bag with a blanket, medical devices (temp, blood pressure, and pulse ox to compare to hospital stats). Bring lemon for lemon water. 

5:45 a.m. The Ride Arrives and bring me to the T (my brother usually takes me but I just got access to The Ride and wanted to try it out as it’s small vehicle transport for people who are disabled and in certain service areas)

6:45 a.m. Arrive at MGH

7:00 a.m. Termeer Infusion Ctr., get hospital bracelet, weight, and vitals. 

7:30 a.m. See/Meet Infusion Nurse for the day who gets port accessed and labs drawn from my seat in the short stay unit.

8:00 a.m. See Dr. Penson about what’s past and what is coming. He also checked for the large lymph node in my armpit. Instead of it protruding, he had to look around to find it (as did I). 

8:30 a.m. Labs back and thanks to stopping Tylenol my liver counts returned to entirely normal so my treatment can resume. Thanks to last week’s blood transfusion, my red counts are also up are follows:

• Hemoglobin (HGB) went from 7.5 last week to 8.5 today
  • Standard range is 12-16
    • Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body’s tissues and returns carbon dioxide from the tissues back to the lungs. (medicinenet.com)
    • “A low hemoglobin level is referred to as anemia or low red blood count. A lower than a normal number of red blood cells is referred to as anemia and hemoglobin levels reflect this number.” (medicinenet.com)

• Hematocrit (HCT): went from 24.1 last week to 27.7 today 
  • Standard Range is 36% to 46%
    • The hematocrit is the proportion, by volume, of the blood that consists of red blood cells. (medicinenet.com)
    • Anemia is basically when hematocrit is low

• Red Blood Count (RBC): 2.59 last week to 3.0 today 
  • Standard Range is 4 to 5.2
    • A low RBC count shows there is a decrease in oxygen-carrying cells in the blood. This is called anemia. Various infections, nutritional deficiencies, and medical conditions may cause anemia. (https://www.verywellhealth.com)

I feel so much better because I feel so much better. As soon as I’m not feverish or vomiting, my appetite returns immediately. 2 days without getting sick or having a fever and I feel like a new woman. The antibiotics I didn’t want (for limiting the effectiveness of immuno) do seem to be helping my PleurX site infection. The blood transfusion I was afraid of having has been had and I do have more energy and am less short of breath. I’m able to do errands in and outside the house and take very short walks. My mood also improves astronomically when I feel better.  

9:30 a.m. Clinical Trial Nurse Check-In and Visit (keep track of temp, report in with any temps 100.4 or more)

10:30 a.m. Pre-Medications (Tylenol, Advil, Benadryl, Anti-nausea medicine given and

           three days, at home, pre-meds of Singulair & Zyrtec)

11:00 a.m. Infusion starts

12:00 p.m. Eat tuna sandwich for lunch with water, (actually lemon water cuz I brought my own lemons)

1:30 p.m. My sister Karyn takes a half day off of work and arrives to keep me company.

3:00 – 3:15 pm 

     Port used last time for labs

     Port gets flushed and closed. 

     IV removed

The nurse gives me two more Tylenol, said oncologist called and told me to take Tylenol every six hours for 24 hours to prevent fever, and I asked, “What about my liver?” and nurse said, “Oncologist said you’d ask about your live and it’s only for one day so it is o.k. Because your counts returned to normal.” 

4:45 p.m. Get home & sister goes to pick up dinner at Revive (where she got me a gift certificate)

5:00 p.m. Get the mail, feed animals, get in pj’s, and put all hospital-related laundry in 

washing machine

5:30 p.m. Eat arugula steak salads with sister (from Revive thanks to her gift card). 

Feels great to want to eat and keep food down. 

6:00 p.m. Chill in front of tv and on computer for a bit

7:00 p.m. Take antibiotic

7:15 p.m. Go to bed as I feel achy and tired

Sleep for 12 hours except for 9 pm and 3am alarm to take Tylenol

7:00 a.m. Wake up (and drink coffee and take antibiotic)

7:30 a.m. Karyn wakes, we have coffee and Irish soda bread & I’m still shocked I have an appetite and no fever. Mostly relieved but also worried – if no fever – is the drug not working? But then realize Tylenol is keeping fever away and I need the break from fevers. I might be able to stand a fever one night a week when I’ve not fevered and felt crappy for a month but at the moment, I will follow the doctor’s orders to manage and prevent symptoms. 

My sister works from my porch but my 10 I tell her I’m feeling well enough that if she wants to head home during lunch, she can. 

All-day I feel decent and when tylenol wears off at 3:30 p.m. I can feel my temperature start to climb. By 9:30 p.m. But I’m able to rest on the couch comfortably most of the night (watching my cousin on MAFS). At about 9:30, I get sick as a dog. However, it doesn’t last long and I feel better after. I head to bed at 10:30p.m. and wake at 2 am with a 100.1 temp. I take ibuprofen and sleep through the night. Having a slight temp after several days without one is not nearly as taxing and exhausting as having a fever for 3 plus weeks straight. 

I am starting to believe the treatment will be something I can adjust to and that my first hard month on the trial was the hard part but not the “new normal” for me. It’s easier to feel better when you feel better and I am so glad that I do.