{"id":5496,"date":"2022-03-23T11:11:24","date_gmt":"2022-03-23T15:11:24","guid":{"rendered":"https:\/\/healwritenow.com\/?p=5496"},"modified":"2022-03-23T11:11:27","modified_gmt":"2022-03-23T15:11:27","slug":"regn4018-infusion-day-schedule-patient-perspective-from-week-5","status":"publish","type":"post","link":"https:\/\/healwritenow.com\/regn4018-infusion-day-schedule-patient-perspective-from-week-5\/","title":{"rendered":"REGN4018: Infusion-Day Schedule (Patient Perspective from Week 5)"},"content":{"rendered":"\n
Week 5 (Cycle Four) \/ Full dose (150 mg.) of REGN4018 as an out-patient (for the 1st time)<\/p>\n\n\n\n
Last week\u2019s 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.\u00a0<\/em>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:<\/p>\n\n\n\n 4:45 a.m.<\/strong> 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.\u00a0<\/p>\n\n\n\n 5:45 a.m.<\/strong> The Ride Arrives and bring me to the T (my brother usually takes me but I just got access to The Ride<\/a> and wanted to try it out as it\u2019s small vehicle transport for people who are disabled and in certain service areas)<\/p>\n\n\n\n 6:45 a.<\/strong>m. Arrive at MGH<\/p>\n\n\n\n 7:00 a.m. <\/strong>Termeer Infusion Ctr., get hospital bracelet, weight, and vitals.\u00a0<\/p>\n\n\n\n 7:30 a.m.<\/strong> See\/Meet Infusion Nurse for the day who gets port accessed and labs drawn from my seat in the short stay unit.<\/p>\n\n\n\n 8:00 a.m.<\/strong> See Dr. Penson about what\u2019s 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).\u00a0<\/p>\n\n\n\n 8:30 a.m<\/strong>. Labs back and thanks to stopping Tylenol my liver counts returned to entirely normal so my treatment can resume. Thanks to last week\u2019s blood transfusion, my red counts are also up are follows:<\/p>\n\n\n\n I feel so much better because I feel so much better. As soon as I\u2019m 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\u2019t 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\u2019m able to do errands in and outside the house and take very short walks. My mood also improves astronomically when I feel better. <\/p>\n\n\n\n 9:30 a.m. <\/strong>Clinical Trial Nurse Check-In and Visit (keep track of temp, report in with any temps 100.4 or more)<\/p>\n\n\n\n 10:30 a.m.<\/strong> Pre-Medications (Tylenol, Advil, Benadryl, Anti-nausea medicine given and<\/p>\n\n\n\n \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0three days, at home, pre-meds of Singulair & Zyrtec)<\/p>\n\n\n\n 11:00 a.m.<\/strong> Infusion starts<\/p>\n\n\n\n 12:00 p.m. <\/strong>Eat tuna sandwich for lunch with water, (actually lemon water cuz I brought my own lemons)<\/p>\n\n\n\n 1:30 p.m<\/strong>. My sister Karyn takes a half day off of work and arrives to keep me company.<\/p>\n\n\n\n 3:00 – 3:15 pm\u00a0<\/strong><\/p>\n\n\n\n Port used last time for labs<\/p>\n\n\n\n Port gets flushed and closed. <\/p>\n\n\n\n \u00a0\u00a0\u00a0\u00a0 IV removed<\/p>\n\n\n\n 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, \u201cWhat about my liver?\u201d and nurse said, \u201cOncologist said you\u2019d ask about your live and it\u2019s only for one day so it is o.k. Because your counts returned to normal.\u201d\u00a0<\/p>\n\n\n\n 4:45 p.m. <\/strong>Get home & sister goes to pick up dinner at Revive (where she got me a gift certificate)<\/p>\n\n\n\n 5:00 p.m.<\/strong> Get the mail, feed animals, get in pj\u2019s, and put all hospital-related laundry in\u00a0<\/p>\n\n\n\n washing machine<\/p>\n\n\n\n 5:30 p.m.<\/strong> Eat arugula steak salads with sister (from Revive thanks to her gift card).\u00a0<\/p>\n\n\n\n Feels great to want to eat and keep food down. <\/p>\n\n\n\n 6:00<\/strong> p.m.<\/strong> Chill in front of tv and on computer for a bit<\/p>\n\n\n\n 7:00 p.m<\/strong>. Take antibiotic<\/p>\n\n\n\n 7:15 p.m.<\/strong> Go to bed as I feel achy and tired<\/p>\n\n\n\n Sleep for 12 hours except for 9 pm and 3am alarm to take Tylenol<\/p>\n\n\n\n 7:00 a.m<\/strong>. Wake up (and drink coffee and take antibiotic)<\/p>\n\n\n\n 7:30 a.m.<\/strong> Karyn wakes, we have coffee and Irish soda bread & I\u2019m 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\u2019ve not fevered and felt crappy for a month but at the moment, I will follow the doctor\u2019s orders to manage and prevent symptoms.\u00a0<\/p>\n\n\n\n My sister works from my porch but my 10 I tell her I\u2019m feeling well enough that if she wants to head home during lunch, she can. <\/p>\n\n\n\n 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\u2019m 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\u2019t 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. <\/p>\n\n\n\n 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 \u201cnew normal\u201d for me. It\u2019s easier to feel better when you feel better and I am so glad that I do. <\/p>\n","protected":false},"excerpt":{"rendered":" Week 5 (Cycle Four) \/ Full dose (150 mg.) of REGN4018 as an out-patient (for the 1st time) Last week\u2019s 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.\u00a0So, even though it’s the fifth week I’ve been on […]<\/p>\n","protected":false},"author":1,"featured_media":5498,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[1],"tags":[],"yoast_head":"\n
staying over to make sure I was o.k. after the first outpatient infusion. I turned out to feel really
well but it was such a comfort having her there just in case. <\/figcaption><\/figure><\/div>\n\n\n\n<\/figure>\n\n\n\n
<\/figure>\n\n\n\n