Induction Chemotherapy — Week 3
The third week of my Dad’s hospital stay brought with it the return of his biopsy mutation results — resulting in the start of my Dad taking midostaurin due to his FLT mutation — and a fever on HOD 18.
During this time, his main complaints were shifting oral pain, rashes on his chest, back, and abdomen, and continued nausea and bloating. He continued to get blood and platelet transfusions, which were slightly more frequent than the second hospital week, and we all eagerly awaited his counts to start recovering, which we were told would happened sometime between days 21 to 28 from the start of chemotherapy.
Overview of Week 3
Overall Graph
When Dad’s hemoglobin fell below 7 on HOD 17, his appetite dropped, the distance he walked dropped, and his overall state dropped more so than HOD 21 when it fell below 7 as well; however, the extent at which his walking, appetite, and overall state dropped was less which seems to be because of the intensity of his oral pain on HOD 17.
He required blood transfusions and platelet transfusions more often this week as his remaining red blood cells and platelets continued to die off due to the chemotherapy. Appetite was pretty poor during this week which was secondary to both oral pain as well as feeling bloated.
HOD 18 was when he had the fever but he was still able to walk around some and eat better than he had the day before when he needed a blood transfusion.
Overall, just in a holding pattern .
White Blood Cells
Really no significant change during this week. On HOD 20, the WBC bumped up slightly to 0.2 but his ANC (Absolute Neutrophil Count) stayed at 0.0 this entire week.
Platelets
His platelets, as referenced above, were dropping more quickly now as his stores of platelets started to decline. He required 2 units of platelets during this week with onset of a petechial rash over his lower extremities and abdomen and easy bruising whenever they dipped low.
While his platelet transfusion during week 2 lasted him about 6 days, the transfusions started to only last about 3 days this week.
Temperature
Temperatures were fine until HOD 18 when his temperature hit a peak of 103 F. He was started on Vancomycin again (was already on Cefapime) and IV Flagyl was added to cover for anaerobic bacteria, which often are found in the gut. Blood cultures and urine cultures never found a source and were negative. After the Vancomycin and Flagyl were started, his fevers regressed. The Vancomycin was stopped 3 days later and the Flagyl was stopped 6 days later. The Cefapime stayed on until near his discharge.
Miles Walked
Walking dropped off when Dad was anemic and dealing with the bloating and nausea but otherwise he was walking decently, continuing to hit about 5 miles per day on some days. His new hospital shoes made it easier to walk comfortably as he was using bath slippers to walk previously (His feet had become very swollen due to all the IV fluids they were giving him).
Daily Log
HOD 15
Logged 6:36 PM
Because of the skin irritation, the PICC dressing was changed to a hypoallergenic dressing which seems to be better.
The standard PICC dressing can cause skin irritation. This can make the skin around the dressing to look red and/or tender. There are some different PICC dressings that the PICC line nurse can try; let your nurse know
His new shoes came in today. They’ve been working well and seem sturdy.
Has been waking up every hour overnight until 3 in the morning to use the restroom and urinate.
His leg edema, which was present before, is now nearly completely gone. The pain that was present behind his front teeth (similar pain when Dad was first admitted) has returned. I am worried that this is the leukemia coming back; surely, it can’t be given that his WBC is 0.1…right?
Dad bit the right side of his tongue today, causing some bruising but no bleeding.
Logged 10:24 PM
Has chest rash has continued and is now starting get a maculopapular rash on his back. Starting to get some non-blanching petechial rash on the inner surfaces of his legs today. Also has an erythematous rash around the PICC dressing as well (still from the paper tape)
Overall, the GI symptoms that he was having before have gone down with minimal bloating, minimal nausea, and the “stone” in belly sensation less present. Main thing right now is just feeling tired which seems mainly due to his anemia and the difficulty sleeping at night.
Dad was doing the salt and baking soda rinses twice a day. We’ll have to do it more frequently to four times a day.
HOD 16
Logged 10:37 PM
This morning, we were told our mutations which are: FLT-ITK, NPM1, DNMT3A. We were told by the oncologist that these mutations are intermediate to poor prognosis mutations. Stem cell transplantation is likely to be recommended. Because the FLT mutation came back positive, Midostaurin (Rydapt) at 50 mg twice a day was started today and Dad will be taking this for 2 weeks and for 2 weeks after every consolidation cycle.
Dad had 1 unit of platelets today (platelets of 9 today) after which he felt unwell and warm which limited the amount that he was able to walk today. This morning, he also bit his right cheek and there was a small ~1.5 cm clot hanging from inside the right side of his mouth; this eventually went away with the salt and baking soda rinses. The pain behind his front upper teeth has gotten worse. The gums here look swollen and the pain is worse with eating. It does not look like the typical chemotherapy mucositis pictures I have seen but is more focal and immediately behind the front upper teeth.
The chest rash seems to have improved today. The back rash is still there but not worse. The rash on his legs has not changed.
Some of Dad’s siblings got their tests to see if they are matches; the tests have mouth swabs which are then used and then sent back to the lab. Easy process.
HOD 17
Logged 6:47 PM
Hemoglobin was 6.8 this morning and his first unit of blood was started at 11:00. Did not have any issues with the transfusion with no fever. Second unit started at 3:00 PM with a gradual fever afterwards; now temperature is 100.8 and they gave him a tylenol.
This morning, Dad almost fell in the restroom. During a bowel movement, he broke into a cold sweat while pushing and almost fell. He caught onto the railing, thankfully.
Less of an appetite today and has not walked yet today.
His oral pain has now shifted to the right side of his upper teeth gums near his canine teeth and the pain that was immediately behind his front upper teeth has somewhat improved. The area where he bit the right side of his mouth has improved with now a tiny clot.
The rash on his chest has improved and the back rash is stable. The rash on his legs has improved.
He has not used any Zofran today for the Midostaurin, which he seems to be tolerating well. Has been using lots of peppermint tea to combat the nausea which has helped.
Logged 9:35 PM
His temperature has come down to 99.3 F since the 100.9 that was measured earlier after the second unit of blood.
Now has pain all over the inside of his mouth but mainly over the area on the right inner cheek where he bit himself. They gave him some magic mouthwash, which has a numbing agent, but he has been avoiding using it.
He’s taking the Midostaurin now by drinking peppermint tea immediately beforehand.
The small wound on his foot from the sandals is slowly healing but is still open. Continuing to re-dress it every night and washing with soap and water.
His back rash seems to be more red, more macular than papular, more dense, and seems to be extending down and to the sides.
Dad hasn’t walked today because of the tiredness. Main issue now is the mouth pain and mucositis. We were told by the covering oncologist that the oral pain was likely not due to leukemia coming back because the WBC was low.
We were told that some people have to get transfusions every other day. Dad has gone now 9 days without pRBC and 6 days without platelets so not bad overall.
HOD 18
Logged 12:17 PM
The social worker is here to talk about Dad’s disability options through his work.
The social workers were a huge help during the entirety of my Dad’s stay, and even during consolidation episodes. Dad’s work would constantly be sending things and forms to fill out regarding state disability, FMLA (Family Medical Leave Act) and his short term and long term disability. Navigating state disability and personal work disability paperwork was confusing but the social workers helped a great deal in figuring out what to do. Ask the unit clerk to have them come by if you have any issues with these things.
Dad feeling overall stronger today. However, his mouth pain is causing him a lot of discomfort; it has been manageable and he hasn’t used the magic mouthwash yet. The peppermint tea has helped some with his oral pain
His “stone in the stomach” sensation has improved significantly, ever since they stopped the IV maintenance fluids, and his chest rash is resolving.
ANC remains 0.
Logged 2:42 PM
Dad had a fever to 102.8. Had blood cultures drawn, chest X-ray, and a urine culture and analysis. Not really having any obvious symptoms other than his right mouth pain and his poor appetite today.
Logged 10:33 PM
We were told that the chest X-ray was concerning for a pneumonia but that it wasn’t that big. IV Vancomycin and IV Flagyl were started. He’s had no fevers since those were started but he also had some tylenol around 6 PM so unsure if it was the antibiotics or the tylenol.
His petechial rash on the inner surfaces of his thighs and calves is more extensive and darker red colored.
His appetite was slightly better at night. It seems like his oral pain improved after the antibiotics started making me think that he may have had some infection going on in his mouth.
They’ve been doing so many blood draws; I’m going to ask the nurse to see if pediatric sized tubes can be used to minimize the amount of blood they take from him.
Dad’s lost some weight; maybe about 8 pounds or so but I need to confirm.
We gave a few sprays of a Manuka honey and propolis throat spray to see if it would help Dad’s mouth pain but we found out that the product was raw and un-pasturized so definitely not going to do that anymore.
HOD 19
Logged in the evening
Slept well overnight; started to sleep a little after midnight and only woke up three times or so.
I looked over the chest X-ray myself with the infectious disease doctor and it looks nearly similar to the previous chest X-rays he had; likely not a pneumonia after our discussion. The suspicion is that the right inner mouth wound, where he had previously bit himself, had become infected and was the source of his fever, especially since he was saying his right face felt swollen and warm yesterday. He was having left sided facial pain and tenderness as well. His right mouth pain has significantly improved and the left sided mouth pain has almost significantly improved; it looks like the raw area behind his left upper molar is now healing. There area on his palate behind his front teeth has improved as well.
His chest rash has nearly completely cleared but having some more of a rash on the abdomen now; does not look maculo-papular though but almost petechial. His nausea, however, was slightly worse today, maybe because he took his ginger pill late (after lunch)?
At some point during induction, we were trying pure ginger extract pills that his primary physician recommended to us. We’re not sure how much they helped but were willing to try anything to decrease the amount of medications Dad was taking.
Dad did much better today than yesterday. Was able to walk well and did about 5.40 miles, the most he has done in a day so far.
Dad says that his hair is coming out when showering. ANC remains 0.
HOD 20
Logged 9:34 AM
Difficult to go to sleep again, went to bed around 2:00 AM.
Appetite decreased but he’s forcing himself to eat. Had some nausea this morning so he pre-medicated before breakfast with the peppermint drops and peppermint tea.
One of the PICC line ports is clogged; they’re planning on using the alteplase but because Dad’s platelets are only 14, the covering oncologist wants a transfusion of platelets first prior to the alteplase instillation which sounds like a safe plan
Sometimes, the PICC port obstruction can be done to clot within the tube, a kink in the line itself, or positional.
ANC still 0.
Logged 9:29 PM
Dad walked well this morning, did 2.75 miles in one go! Was unable to walk much this afternoon because the IV kept beeping and they had to do things to it. In the meantime, I fell asleep. However, Dad walked well in the evening, walking about 1.5 miles.
Appetite at breakfast was pretty good but declined at lunch time and dinner. Did not feel like eating dinner. Has been using a lot of peppermint tea for nausea control; has not been using zofran before the midostaurin.
Dad’s cheek pain is almost gone, continuing on all the IV antibiotics. The vancomycin was given slightly late today, around 3:00 PM. Infectious disease doctor thinks that the Vanco might be able to come off tomorrow but may keep Flagyl on for awhile. They were running the IV antibiotics with a fair amount of IV fluids so Dad feels slightly bloated from all of the fluids.
Turns out the PICC line port that was clogged before started working again so the alteplase was not needed.
He got a unit of platelets earlier, felt like it was cold going in but did not have any “sick” feeling or fever afterwards; had a much better reaction to the platelets this time than the other 2 times.
Dad’s chest and back rash have cleared up significantly, Continued lower leg petechae but not worse than before.
HOD 21
Logged 10:53 AM
Hemoglobin down to 6.4 this morning. Before transfusion temp of 97.7. Getting 2 units of pRBC. Walked .89 miles this AM, about to start first transfusion now. The nurse said he's CMV positive?
Repeat temperature @ 1107 was 98.3 F
Repeat @ 1257 was 98.6 F
Repeat @ 1527 was 98.8 F
2nd unit started @ 1600
Repeat @ 1619 was 98.7 F
Appetite this AM has not been bad, Dad has been able to force food down and did alright with breakfast. He liked the crackers that Mom made.
Logged 12:37 PM
They are stopping the vancomycin today. ANC remains 0.
Logged 11:31 PM
Dad tolerated the 2 units of blood well and was able to walk 1 mile afterwards. Said his stomach felt full/"like a stone" because of all the fluids from the IV antibiotics. Had poor appetite and nausea for dinner; just wanted to eat fruit.
We’re planning on doing a 2 full weeks of midostaurin; this may cause some bone marrow suppression so Dad’s counts may come back later than expected ("up to day 35" is what the oncologist said). Still will be getting a bone marrow biopsy between days 21 and 28 (days from the start of chemotherapy) still.
Now, essentially, we are just staving off infection while waiting for Dad’s bone marrow to recover.
Looking back at his records, his counts started to recover two days later on HOD 23 which was 21 days after the start of chemotherapy.
Today is day 21 in the hospital for Dad. All things considered, his spirits are good, faith in God strong, and he feels in his heart that he will beat this. We will get through this.