Induction Chemotherapy – Week 4 and 5
Dad’s counts started to recover during the last 8 days of his hospital stay and he did not need any more transfusions. We discovered a small pressure sore above his buttocks and his nausea and bloating started to slowly improve.
He was slowly taken off his antibiotics as his counts started to recover. He had a repeat bone marrow biopsy that showed that he was in remission and that he would not have to stay for another immediate round of inpatient chemotherapy. The day we got the news, on HOD 29, was the day that Dad was able to go home for the first time in nearly 1 month.
Overview of Week 4 and 5
Overall Graph
No transfusions this last week. His counts started to recover this week (best seen on the WBC and platelet graphs) and his hemoglobin remained pretty stable (there were a few peaks after his transfusion on HOD 21 which were likely lab errors). Overall, things continued to get better and better for dad as his counts recovered and his oral pain got better. His Flagyl and Cefapime were stopped on HOD 26 and 27, respectively and his repeat bone marrow biopsy, to check if he had gone into remission, was on HOD 27 as well (25 days after the start of chemotherapy); this bone marrow biopsy showed that a hypocellular marrow and that he was in remission, praise the Lord, and he was discharged home that evening on HOD 29, nearly 1 month after he went to urgent care.
White Blood Cells
The WBC thus far in the 0.1-0.2 range with a continual ANC of 0. On HOD 23, dad’s WBC was 0.1 but, thereafter, his WBC continually rose up with evidence of neutrophils (ANC) on HOD 25 (ANC was .01 on HOD 22 but was not thought to be significant). Every day after HOD 25, the ANC and WBC continued to rise and, because his ANC was trending up and nearly 500, Dad’s oncologist thought it was safe for him to go home on HOD 29.
Platelets
Before HOD 23, the platelet count seemed like it was descending and that Dad would need a platelet transfusion. However, the counts started to hold steady for a few days, delaying possibility of transfusion, and then actively started coming up after HOD 25 in more of an exponential fashion (as opposed to the WBC which was more linear).
Fever
No fevers for the rest of the admission and, as previously noted, the Flagyl (which was started after his second episode of neutropenic fever) was discontinued on HOD 26 and the Cefepime was discontinued on HOD 27 (Vancomycin was discontinued after 3 days on HOD 21).
Miles Walked
As always, improvement in how much Dad was able to walk after the transfusion he had on HOD 21. With his counts improving, Dad was able to sustain for the rest of the admission without transfusions and his hemoglobin was steady/slowly grew through the remainder of his admission. He logged his longest day of his admission on HOD 25, walking 7.08 miles up and down the hallway.
Daily Log
HOD 22
Logged in the evening
Dad walked okay today. No transfusions today.
No PICC dressing changes today, asked nurse to come back tomorrow to do it (which is 8 days from last dressing change)
Having bowel movements but having a lot more gas and distention in the stomach. He was trying to get lunch down today but threw up some water at lunch time because he felt like there was no more room in his stomach.
We were told by the nurse that the ANC was 0.01 but the oncologist never commented on this. ‘
I had to leave today to go to work but will be back in a few days.
HOD 23
Logged in the evening
I spoke with the oncologist on the phone who thinks the ANC of 0.01 is not a big deal and that things are continuing as expected. Mom said that Dad is walking well. Has not been able to eat well in the evening to the mouth pain and no other change. His PICC line was changed today.
HOD 24
Logged 8:36 PM
I came back from work. We noticed a small blistered area above Dad’s midline buttock today. Mom has been putting tea tree oil on it and the nurses gave him a donut pad to help keep pressure off of it.
This is why it is so important to get out of bed, walk, and stay up in a chair when you are in the hospital for prolonged periods of time. Even though Dad was walking well, he would be in bed when he was not walking (he didn’t like the sofa or chairs in the room and found the bed more comfortable) and this put constant pressure over his sacral area leading to his pressure sore. Thankfully this got much better with my mother’s dressing care and by being more cognizant and changing positions every hour or so.
Dad has continued to walk well. Eating has been fine in the mornings but as time goes on, the mouth pain becomes worse and worse and limits how much he is able to eat. Main issue today is his continued heavy bloated feeling and the oral pain.
The covering oncologist for this weekend does not think the pain behind his front upper teeth is not worrisome and is not evidence of the leukemia coming back.
I was worrying whenever Dad said he had the oral pain because he had a similar pain in his gums before he was diagnosed. Also, what he presumed was mucositis was not typical to the mucositis most people have; it seemed like most people’s mucositis was diffuse and over the entirety of the mouth whereas Dad only had it immediately behind his upper front teeth in his palate. This would go away with time. The oncologists were not worried about it being relapsed leukemia because there was nothing suspicious on his blood counts.
HOD 25
Logged 10:30 PM
Dad’s hemoglobin has gone up, now up to 10 or so. The covering oncologist said it was a good sign. His platelets have not dropped either—they are holding steady.
His bloating and nausea has improved a small amount and he is able to eat a bit more than yesterday. His oral pain is better today than yesterday. His buttock area was very painful yesterday but has improved today; the foam donut pad helped some. Per Mom, there was a small pustule that formed yesterday that may have drained some liquid. She has been dressing it with a charcoal dressing and has been continuing to use tea tree oil.
He walked 7 miles today; a great accomplishment.
This was the most he had walked in 1 day during the entire admission
His ANC has come up to 0.06 so things are recovering.
HOD 26
Logged in the evening
ANC has doubled today to 0.12. Hemoglobin improved to 8.7 and his platelets have come up to 30 (was 22 yesterday). He has been feeling better today with improved bloating and nausea. His appetite has improved as well, now eating about 80-90% of his normal amount for breakfast, about 50% of his normal intake for lunch, and for dinner, able to eat a sandwich and some fruit.
His bowel movements are soft and not well formed but not runny; pretty consistent.
The small pressure sore area above his buttocks is slightly red, about a 4 x 4 cm area and a small pimple, about a 4 x 4 mm, which is dark. Per Mom, this area has been improving.
He has been walking very well, 6.34 miles today. However, he says that he has been feeling unsteady; not dizziness, just a general sense of imbalance and uneasiness which is present when he is walking. Because of this, he feels like he needs to take wider steps.
Dad also feels like his vision is occasionally dim. His hair also seems to have gotten much more thin which was very evident today.
Dad had never said anything to the doctor about this and, in retrospect, it would have been good to let the doctor know so that they could ask the eye doctors to come around to do an eye exam or see if he needed any eye drops. The cytarabine can cause eye symptoms; they gave him eye drops before he received the HIDAC (high dose cytarabine) consolidation chemotherapy a week later
The oncologist said that, based on how Dad’s counts have been improving, he should be able to go home in 2 days!
HOD 27
Logged 8:49 PM
Dad’s ANC has continued to improve, now at 0.22. Dad had a repeat bone marrow biopsy today. The oncologist said Dad could probably go home in 2 days and that he would have to come back in a week for consolidation chemotherapy, provided that the bone marrow biopsy shows him in remission.
Appetite has overall improved. Continuing to walk well and we started doing body weight squats by the window in the hallway as well which Dad really liked.
They told us that Dad would not be able to lift more than 10 pounds with his PICC line in so really the only “weightlifting” we could do in the hallways were leg bodyweight exercises.
Dad’s continuing to feel slightly off-balance and occasionally feels like his vision is blurry or dim. This is intermittent. He also has some oral pain that is hardly there in the morning and then gets worse in the evening.
Today, he tried writing words with a pen and signing his name. This was difficult for him and we are not sure if it’s due to him not having used a pen in a long time or if it is something else.
The rash on his body has gone away and the area above his buttocks which was previously bruised looking has gone away.
They stopped the Cefapime this morning.
HOD 28
Logged in the evening
Dad continuing to walk well and now doing squats. His bloating and nausea is now minimal.
Oral pain is most evident behind his upper front teeth but the swelling in this area has gone down and it's mainly noticeable at night, which has been stable.
The oncologist is confident that Dad should be going home tomorrow. A nurse educator came by today to teach Dad, Mom, and I on how to flush the PICC line every day. She said we could buy a reusable PICC cover that we could use at home…I wish we had known about this earlier. Would have saved all the time taping plastic bags around Dad’s PICC line and spared him all of the irritation from the tape.
I’ve mentioned this before but if we had known about these reusable PICC line covers earlier, Dad’s skin and hours of time could have been saved.
HOD 29
Logged 1:00 PM
Dad is in remission! The oncologist said that the biopsy showed a hypocellular marrow. There was no number given or % of blasts (we know that <5% blasts is remission but we do not know yet what % it is). However, we were told that the bone marrow was “hypocellular with progenitor cells.”
Dad eating well, walking well.
His PICC dressing was changed today and there was a small ~1.5 x 1.5 cm blistered area where the dressing was which seems to be from dressing tape rubbing on the skin. We dressed it with some antibiotics ointment.
We bought a big box of 144 individual packets of bacitracin antibiotic ointment for about $10 for any cuts or scratches Dad got when he went home which has been useful.
We’re planning on going home this evening, taking the midostaurin early at ~6:00 PM (usually gets it at 10). He’s going home on the acyclovir and posaconazole that he has been taking while he has been here.
His counts are continuing to improve, his ANC is now 0.42 and should be over 0.5 by tomorrow, which is why the oncologist thought it was OK for Dad to go home tonight.
We’ve been talking a lot to Dad’s insurance about his short term and long term disability
Logged 8:55 PM
We are now at home. The PICC shower cover works great! We wrapped Dad’s PICC up with plastic wrap first before using the cover, just to be safe. But no water got through the cover. Dad glad to be home.