Induction Chemotherapy — Week 2
During the second week of my dad’s hospital stay, he finished his 7+3 chemotherapy and he started to experience some of the symptoms that commonly arise after chemotherapy.
He was periodically nauseous, vomited, became tired easily, started to experience some abdominal discomfort and some oral pain. His blood counts continued to drop and he started requiring blood (pRBC) and platelet transfusions to keep his numbers up to prevent hypoxia (low oxygen) and spontaneous bleeding. He had a fever on HOD 9 after which IV antibiotics were started.
Overview of Week 2
Overall Graph
The first thing to notice is at the very bottom with the triangle data points. On day 8, Dad got 2 units of pRBCs (packed red blood cells) because his hemoglobin dropped below 7. He got 1 unit of platelets on day 10 because his platelets dropped below 10 (not shown on this graph).
After he received the blood transfusion, he started to feel better overall with his overall state, appetite, and distance walked everyday improving. Of course, because his bone marrow was wiped out by the chemotherapy, his body was not making any significant amount of blood and his hemoglobin started to go down after the transfusion was given on day 8.
Overall, he was feeling much better this week than when he first came to the hospital, as he was not dealing with continual fevers and the bad mouth pain and swelling that he had on admission.
White Blood Cells
His chemotherapy finished on hospital day 10 and fluctuated between 0.1 and 0.2 the entire week. Because his WBC was so low, he had a fever on day 9 after which IV antibiotics were started.
Platelets
His platelets continued to trend downwards until he got a unit of platelets on day 10 because his platelets that day were 9. Whenever his platelets were this low, he started to have small pinpoint dark red dots all over his ankles and lower legs. After the platelets were replenished, these little bruises would go away.
Temperature
Prior to this week, Dad’s temperatures were fine after HOD 2. This week, he spiked a temperature of 101 degrees on HOD 9 after which blood cultures, urine cultures, and a chest X-ray were done as well as IV Vancomycin started (He was already on IV Cefapime). After the Vancomycin was added, his fever improved.
Miles Walked
Dad continued to walk well. HOD 8 was when his hemoglobin was very low and he received the blood transfusion but after that day, he was able to put some serious mileage going back and forth in the hospital hallways. He was wearing slippers during this time and they broke some skin on his foot. This improved after we got him some more protective, walking slippers that were great for walking while having room for his swollen feet and being easy to put on.
Daily Log
HOD 8
Hgb 6.3, WBC 0.1
Logged 11:50 AM
Continuing to feel bloated and was dry heaving today but did not vomit this morning. Was given Zofran 4 mg IV given with resolution of nausea. For breakfast, was able to tolerate small bowl of oatmeal, 1 egg, and some applesauce for breakfast.
We’ve set it up so that I will sleep at home now and come the hospital with breakfast in the morning. Mom will come at lunch time and bring with her lunch and dinner, as she wants to make sure that Dad eats healthy home cooked meals. This is much more efficient than what we have been doing which is where mom comes with breakfast and lunch in the morning, leaves in the afternoon, and then comes back at dinner time with dinner.
Hemoglobin this morning was 6.5 and he will need a blood transfusion today (needs blood transfusions whenever the hemoglobin goes below 7); he will be getting 2 units. He was under the impression his whole life that he was a B but turns out he is actually blood type A+. He is confused as am I.
Logged in the evening
Dad did well with the 2 units of pRBC, repeat hemoglobin is 9.5. He has been feeling bloated and was in bed all day. He walked a little in the room but did not have any bowel movements.
He’s not eating much; we will have to do smaller frequent meals. As such, he feels overall weaker and tired and slept most of the day.
Dad’s hospital room shower isn’t getting hot, engineering in the hospital getting a new mixing valve for the shower; hopefully will be fixed tomorrow.
During this time, we were wrapping my dad’s PICC line with a white plastic bag and then taping above and below it to protect it from water while he showered. It took about 15 minutes to do and would often irritate my dad’s skin. We later found out, after discharge, about reusable PICC covers which I wish we knew about from the beginning. They make shower so much more pleasant and don’t cause skin irritation and breakdown.
At some point around today, Dad developed a maculopapular rash on the forehead and right neck. None on the arms, chest, back or legs. Rash is otherwise asymptomatic.
HOD 9
Hgb 9.1, WBC 0.2
Logged 9:20 AM
Started some vitamin D. Feels overall better this AM but unable to eat much secondary to nausea and his bloated sensation — “chemo belly” — after he eats. His belly is large, distended, and sounds hollow.
Dad doesn’t vocalize his nausea very often so its hard to really ascertain how he’s feeling.
1 more day of chemo…
Hiccups have stopped; he didn't have any yesterday either. The dry cough he had is better as well but,, starting from yesterday, he was hacking up some white sputum occasionally, Lungs sounded clear..
Breakfast, he was able to eat ~1/2 oatmeal with almonds, ~1/2 of an egg. He’s been sleeping better overnight but is still waking up about every 1.5 hrs to use restroom. They offered a condom catheter but he didn’t want to use it.
A proton pump inhibitor (anti-acid medication) was ordered ~1-2 days ago because he was having some acid pain in his stomach but since using Zofran, Dad' hasn’t had the sensation.
Logged 6:57 PM
Last dose of cytarabine was started this afternoon. Dad’s face and right neck rash have improved some. In the afternoon, he was having low grade temperatures: ~100.3, 99.9, 100.2. This evening at 5:30 PM, he had one up to 101 F. Blood cultures and urine culture were sent and they started IV Vancomycin again. This is the second time he has been on Vancomycin; he was on a 3 day course earlier in his stay for that suspected pneumonia. They never stopped the Cefapime at that time so now he’s on both the Cefapime and the Vancomycin.
His cough seems more pronounced today? It is hard to say but he has been spitting up some white sputum which he says is extra spit due to the bitter taste from the chlorhexidine mouth rinses he has been getting. He feels also like it is hard for him to control his body temperature. He has been wearing multiple jackets and sweaters.
We walked after breakfast ~5 laps, ~15 minutes, and after lunch ~20 minutes, ~6 laps or so. will see about tonight. Small improvement in lunch and dinner intake. Overall eating better today. He’s had 2 bowel movements today.
HOD 10
Dad finished his cytarabine today so no more chemotherapy now. He had a large bowel movement that started to get slightly loose. Also received one unit of platelets today. His temperature went up to 100.1 or so in the late afternoon but then went down to 98 F. He had a chest X-ray today as well which showed a small interval increase in his bilateral pleural effusions, left more than right. They are very small and do not show any pneumonia and consolidations, so something to be happy for. Blood cultures remain negative and he continues on the Vancomycin and the Cefapime.
Walked well today at 4.35 miles.
HOD 11
Logged 10:32 PM
Had good morning appetite, lunch and dinner smaller amounts but overall better today than days before
Has started to feel like, however, that there is a “stone” in his stomach; his abdomen has become distended and full.
I found out today that the pain in his mouth that he has been having is not pain on his palate but actually pain behind his last left maxillary molar; looking back there, it looks like the molar is jutting out at a 45 degree angle and has eroded some of the gum tissue.; does not look infected. It seems like when the leukemia first came, it caused some swelling of the gums in the area which started to rub on his crooked teeth, causing an erosion of the gum tissue there.
Dad has been doing salt and baking soda rinses which have helped with the pain some. The chlorhexidine rinses caused burning pain to the inside of his mouth and around these open areas so he doesn’t want to use them but the salt and baking soda rinses have been okay.
My dad was doing salt and baking soda mouth rinses after every meal as well as whenever he was in the restroom. From looking at other patients’s stories online as well as scientific research, it seems that doing these rinses consistently may prevent the oral mucositis that many patients get during chemotherapy
Has also been having some loose stools.
The slippers that Dad have been wearing have been digging into his feet because of how much he is walking in them. There was a small 1/2 cm by 1/2 cm area of skin breakdown that I discovered tonight; this was washed with soap and water and dressed with bacitracin ointment.
Has not had any FLT or next generation sequencing back yet and so they are unable to start the midostaurin (Rydapt) even though today is day 8 of treatment and Rydapt should be started
HOD 12
Logged in the evening
Had a small amount of blood when he wiped after bowel movement. Also, we noticed a rash on his chest; the thought is that it is a drug reaction from his Vancomycin so the Vancomycin was stopped.
HOD 13
Logged in the evening
Feeling better overall. After his morning walk, Dad gets tired and sleeps. His appetite is continuing to improve some. The rash on his chest is stable and he is continuing to have loose stools.
He has also been having a skin reaction to his PICC dressing where the skin around the dressing looks irritated and red.
His IV fluid were stopped today.
HOD 14
Logged 5:36 PM
The chromosome studies came back today; this shows no translocations or large mutations. We are still waiting on the molecular markers and FLT mutation status to come back (of which FLT mutation will be on there)
FLT status is one of the few things that can change the management during induction chemotherapy. If you have the FLT mutation, you will be started on midostaurin (Rydapt) which is a specific inhibitor for the FLT mutation. This is supposed to start the day after the 7+3 induction chemotherapy regimen is finished and is a 2 week oral course
There is a small blood blister on Dad’s lip that formed after he bit it. We were able to stop the bleeding with pressure, ice, and vaseline.
They are now contacting all of my dad’s siblings to see if they may be a match for him in the case he needs a stem cell or bone marrow transplant