Induction Chemotherapy — Week 1
My dad was admitted to the hospital with concern for acute myeloid leukemia towards the end of September 2019.
The following were my notes for each day of his hospital stay. The Emergency room staff was very concerned he might have AML but were also worried about the effects of having such a high WBC and its effect on the blood (very high WBC can cause the blood to be thick and sluggish which can lead to organ problems).
I will be referring to each day in the hospital as HOD — HOspital Day. I will put a military time to log when I wrote each portion of my notes.
Overview of Week 1
Overall Graph
This compares my dad’s hemoglobin, overall state (graded subjectively by myself from 1, being bed bound and obtunded to 10, normal healthy self), appetite (graded from 1, being not eating, to 5, being normal appetite), and miles walked. The pRBC (u) and PLTS (u) are units of blood and platelets given that day; he did not have any blood or platelets during his first week.
A few things to note: day 3 is when he started to get chemotherapy but his hemoglobin was already dropping from the leukemia before that. His overall state improved as he first started treatment but then started to go down as the side effects from chemotherapy started to take their toll. The number of miles he walked a day reflects this as well. His appetite was poor during this entire time.
White Blood Cells
His white blood cell count was very high on admission, above 70K. They started hydroxyurea to lower the WBC around day 1 or 2 and day 3 is when he started his idarubicin + cytarabine chemotherapy. His WBC responded and his counts dropped in a relatively linear fashion
Platelets
His platelets were lower than normal to start with but, over time (and especially after chemotherapy was started on day 3), they started to go down. No platelet transfusions were given (below 10 is when we were told that a unit of platelets would be given)
Temperature
These show the highest temperatures that Dad had during this time, referred to as “TMax.” Days 3 through 7’s temperatures are not accurate because I did not record them during this time; however, he was afebrile during this time.
Miles walked
Getting out of bed and on your feet is one of the best things you can do for your health while in the hospital. Knowing this, I walked with my dad when he was able to and measured how far we walked. I found it correlated well with his overall state and how he was feeling. Before he got sick, Dad enjoyed walking and hiking so walking a lot of not out of the ordinary.
Daily Log
HOD 1
WBC 52-60
Dad admitted to the hospital. His blood pressure has been low with systolics in the 80s-90s and diastolics in the 40-50s, MAPs around 55. He was given multiple bags of LR which has helped his pressures.
He has been feeling chilly intermittently and his left face has some mild diffuse swelling. His inner ankle has some dark bruising. His trismus remains at ~1 cm.
The hematologist oncologist is concerned for AML and a bone marrow biopsy was done on dad’s right posterior pelvis.
Blood cultures were drawn
HOD 2
WBC 48, Hgb 9.3
Blood cultures were negative, PICC line was placed. Hydroxyurea was started around this time which helped bring the WBC down (went up to 60s then went down to mid 40s or so).
BP closer to baseline and albumin given to help retain intravascular fluid. Still having fevers that are being controlled with tylenol 650 mg. Dad doing better with half dose tylenol b/c he breaks into a sweat with the 650 mg. Having a cough.
Preliminary results from the bone marrow biopsy were AML but no subtyping back yet. Final pathology results will be back in 1 week. Oncologist suspecting that he has a FLT mutation given how high his WBC was on admission but have to wait for the subtyping to know.
AML is characterized by the mutations that are found on the bone marrow biopsy. The mutations tell you how bad the cancer is and help the doctors guide treatment. Different hospitals will get this analysis back at different times (most hospitals have to send the biopsy specimens to outside labs).
Dad was transferred to a different nearby hospital which has a smaller room. Mom has been unable to sleep since diagnosis.
Still having fevers, now up to 103. Dad’s gums are still swollen and getting intermittent chills.
HOD 3
WBC 33, Hgb 8.1, PLT 55
Logged 1:15 PM
They are planning on starting chemo this morning. Dad will be receiving idarubicin (12 mg/m2) and cytarabine (100 mg/m2) in the standard 7+3 regimen dosing. Was reading a number of papers, including one by Lee et al, which said that daunorubicin was more effective than idarubicin in FLT AML but no different than idarubicin regarding complete remission rates, overall survival, and relapse rates. I spoke with the oncologist and he essentially said that their institution’s protocol always used idarubicin and that they had a ~70% remission rate with it during induction chemotherapy. In my mind, if he was suspecting an FLT mutation, why not use something that showed increased efficacy for it?
Looking at the NCCN guidelines for AML, they too recommended daunorubicin for FLT mutated disease; however, our hospital sent out the mutation studies to a far away lab and the results wouldn’t be in for a number of weeks so no way of knowing if had FLT before the start of his induction chemotherapy. Based on the NCCN guidelines, idarubicin is equivalent to daunorubicin and is better tolerated; just the question of the FLT mutation status and whether my dad would respond as well to the idarubicin, assuming he had FLT, makes me nervous.
They stared the chemo. Dad doing well but feels like his hands are a little swollen. Having a cough which is improving. Yesterday, cough was spastic and affected his voice. His trismus has improved to about 1.2 to 1.5 cm of mouth opening. His left cheek doesn’t hurt as bad. He hasn’t had any fevers today. Standing up a lot more and has been staring out the window standing up which has been nice. Not staying in bed all day.
Logged 11:00 PM
Dad doing well, minimal side effects from the chemo, maybe some swollen feet which improved. Small episode of minimal nausea which seems to have improved. Mouth pain improved, jaw opening pretty good, ~2 cm, having some bilateral pitting ankle edema from all of the fluids.
Dad and I spoke about trusting in God and how things have worked out this way for a reason. We’ll do what the oncologist wants; he knows from experience how things are going and God is guiding. Dad feels like he will be healed.
Dad’s breathing has been better with better tidal volumes on the inspiratory spirometer. Using the inspiratory spirometer pretty frequently.
Blood pressure slightly low, ~80s/50s and on fluids at 100+21 ml/hr from both chemotherapy and lactated ringers.
I’ve been sleeping at the hospital with him and had a chance to go home to shower and have dinner made by mom
HOD 4
WBC 14, Hgb 8.5 PLT 49
Logged 9:44 AM
Dad was sweating overnight from 1 to 5 AM with no fevers or increase in temperature. Sweat was saturating his gown and had to be changed a few times.
Infectious Disease doctor came in and they are starting acyclovir (anti-viral) today and posaconazole (anti-fungal) tomorrow. He has been on IV antibiotics – Vancomycin and Cefapime — since earlier in his admission and they may be able to take the Vancomycin off soon.
Logged 9:08 PM
No new issues, no bowel movements. Hasn’t had one in at least 1 day, maybe two? Not on stool softener.
Dad walked 3 times today, first time ~15 min, second time 20 min, then 30 min this evening (ventured into hallway today).
Left mouth pain has improved but no significant improvement from the morning to now; significant improvement from yesterday however. Main pain that is left is on the roof of the mouth which has been present for a while. Has been having continued lower leg pitting edema. He is, on the computer chart, positive 7L.
The offered Lasix was offered this morning which Dad did not want. However, this evening, we considered it but his BP was in the 80s systolics so we decided not to. They turned his fluids down to 75 ml/hr as dad has been able to drink water some now.
Nurse told us that worst side effects will be around HOD 7-14.
Dad's been eating going well, good appetite today and doing well with the IS today; got to 1750 ml or so. Mouth opening better, ~2 cm now. He has been walking well, a total of 4.18 miles today.
I got a nearby 24 hour fitness gym membership so i can go shower there and work out when Mom is with Dad.
Luckily no fevers today. He is probably now ~36 hrs with no fevers. No other systemic signs; he mainly has mouth pain which is bugging him. Bruising on ankles becoming more evident, does not appear to be getting bigger significantly
HOD 5
WBC 14, Hgb 8.5 PLT 49
Continuing on vancomycin and cefapine. Strength has improved and walked 3.5 miles today, up and down the hallway.
He started having hiccups today as well as his dry cough which seems to be better today. Leg edema stable; the talked about lasix but his BP continues to be on the low side. His left mouth pain has improved.
Chest X-ray was done today because dad was continuing to have the cough. This showed small pleural effusions, likely secondary to all the fluids he has been getting.
HOD 6
WBC 0.3, Hgb 8, PLT 15
Logged 1144
No new news from the oncologist who thinks everything is going well… "typical.” FLT/other things are coming nack in a few days with the rest of next gen studies coming back in 2 weeks or so.
Because of how the chest X-ray looked, they discontinued the Vancomycin and are continuing on the Cefapime; they ordered some Lasix, 20 mg, via IV today for it as well. His ANC (Absolute Neutrophil Count) is less than 500 today, so now formally neutropenic. Neutropenic precautions were started today.
So far, has walked 1.39 miles this AM. He stubbed his right toe this morning on the IV pole. his feet are very big and we need to find bigger shoes that he can easily wear in the hospital to fit his swollen feet. Has just been using some slippers to walk.
He has been feeling always sleepy, probably because he is always being woken up at night for vital checks and things.
Logged in the evening
Dad feeling bloated with some nausea/acidic feeling, possible because of the Lasix? Feeling like he almost needs to throw up. His abdomen has been distended as well and he feels like there is a lot of gas in his bowels. He has been having normal bowel movements through, 2 today.
HOD 7
Today was more rough. Dad had a moment where he felt cold all of sudden when he was sitting by the window, then went back into bed. No fevers today but feeling generally unwell, tired, and an "acidic feeling in stomach."
Had a big lunch today in addition to have a distended belly. This morning, had a BM with a lot of flatulence which was expelled. Still, belly is slightly distended afterwards and returned with more gas afterwards.
Threw up once today because of trying to eat a lot with the distended abdomen; afterwards, Dad said he wants to eat smaller, more frequent meals.
Poor sleep last night because he was using the restroom every 1.5 hours from all the fluids he is getting. We were told that the IV fluid rate would go down once the chemotherapy was done.
He was started on simethicone as needed for the distended abdomen which does not seem like it has helped much.
We found out today that my dad is CD22+ (40%) and should have been given gemtuzumab (which is supposed to be given on day 1, 2, 3, or 4 of chemotherapy treatment); however, this was not known until now. Our oncologist called a bone marrow hematologist who said that this medication may have a possible interaction with future bone marrow transplant. FLT status still pending. so far, 3.24 miles walked today; however, may not do after dinner one since he is resting right now.
Walked a total of 3.74 miles today.