This page documents my experiences with metastatic pancreatic cancer (膵臓がん) in 2020 as I undergo chemotherapy (化学療法) at Saiseikai Shigaken Hospital – 済生会滋賀県病院 (Wikipedia) near my home in Ritto City, Shiga Prefecture, Japan.
Diagnosis & surgery 2019
In early May, 2019, I experienced abdominal pain and jaundice, symptoms of pancreatic cancer (膵臓がん). On July 24, 2019, I underwent surgery, a nine-hour pancreaticoduodenectomy – Whipple procedure (膵頭十二指腸切除術) – to remove my duodenum and gall bladder, 50% of my pancreas, and 20% of my stomach.
Through late summer and autumn I had little difficulty with digestion and blood sugar control, and I gradually regained strength by walking and leisurely cycling until mid-December.
Cancer spread to liver
Medication (TS-1) failed to inhibit the return of cancer at the end of 2019. In January, 2020, a CT scan revealed that cancer had spread to my liver. On January 28, 2020, I began chemotherapy with FOLFIRINOX.
A personal journal
This page documents personal experience, not medical details for professionals. I have no desire to study pancreatic cancer or oncology beyond a realistic understanding of my prognosis and treatment.
As I face the challenges of cancer and chemotherapy with a slim chance of long-term survival, I plan to spend my remaining days enjoying outdoor life, especially photography, and little daily pleasures like eating, reading, and writing.
I hope this informal record of my experience with advanced cancer might benefit other patients and provide some insight into what it’s like to undergo advanced cancer treatment here in Japan.
A dynamic CT scan on January 6th, 2020, showed cancer metastases in my liver, so I must begin chemotherapy (化学療法). Today doctors and other staff explained procedures, risks, and possible side effects in some detail. There was a lot of paperwork in which I confirmed my understanding of how they were planning to treat me.
I will enter the hospital on January 13th. The next day in a radiology lab doctors and technicians will insert a port through which the anti-cancer medications will be delivered into a large vein. It looks like chemotherapy will be tough, but I’m willing to go through it if it will help me enjoy life longer.
Saiseikai Shigaken Hospital 2020-01-13 to 2020-01-16
On January 13, 2020, I entered Saiseikai Shigaken Hospital (済生会滋賀県病院) to have a port installed and to begin chemotherapy (化学療法) under observation. I expect to be here until Sunday or maybe Monday next week.
Today is January 15th. My port was installed yesterday. A nurse started an IV line into my right arm around lunchtime. The procedure began at 14:00 and took about 90 minutes in a radiology treatment room. I remained awake as they ran a tube down to a big vein. There was no pain other than the needle to inject local anesthesia. This port will remain in my body under the skin below my right collar. It comes with an owner’s card by Toray (the manufacturer) that I am to carry. It’s very unobtrusive, and apparently I can pretty much ignore it after my body heals.
Today is a rest day to promote healing around my port. This morning one of my doctors came with more paperwork about possible side effects of chemotherapy. I signed the papers to confirm that I understood. Later I’ll meet the ward pharmacist to talk about medication for digestion and control of blood sugar levels.
Chemotherapy begins tomorrow. I’m concerned about side effects, but I’ll have to take what I get. In any case, I’ll learn how to cope and get on with life.
Actually, on January 16th I went home without beginning chemotherapy. Doctors decided to wait 2 weeks until my port is completely healed.
Saiseikai Shigaken Hospital 2020-01-27 to 2020-02-01
After my chemotherapy port healed, I entered the hospital again on January 27th and began chemotherapy on January 28th under close observation. I had no allergic reactions, and the only side effect that I noticed was that my fingertips had increased sensitivity to cold. When I took a bottle of very cold water from a vending machine, it felt as if small particles of ice were on my fingers.
My appetite was fine, but the hospital food didn’t appeal to me, especially the vegetables. I added packets of mayonnaise to some vegetable dishes and furikake to my rice when it was not served. The fish, miso, and fruits were pretty good, and I supplemented my diet with snacks from the Lawson convenience store down on the the 2nd floor.
I was allowed to go home Saturday morning, February 1st. I was pretty weak after the chemotherapy and lack of daily exercise, so it took 35-40 minutes to walk home, about 10 minutes longer than usual.
Future treatment will be on a biweekly outpatient basis beginning on February 18, 2020. In the meantime, I will eat well and try to get more exercise.
On February 18, 2020, I began treatment with FOLFIRINOX at the Ambulatory Cancer Chemotherapy Center at Saiseikai Shigaken Hospital (済生会滋賀県病院 外来化学療法センター). This treatment regimen of several powerful drugs may slow the growth of my metastatic (advanced) pancreatic cancer; it is not a cure. Markers in my blood have risen since my previous blood test several weeks ago. My hope is to live longer and with fewer and less severe symptoms of cancer.
Treatment includes infusion of several drugs in a specific order into a large vein via the port under my collar. I sit in a large, comfortable chair and read or talk with nurses, doctors, and pharmacologists. At the end of treatment at the hospital, an infusion pump is attached to my body. The pump is designed to operate for 46 hours. After infusion is finished, I will detach the pump and take it back to the hospital. At home last night I put the infusion pump in a small waist bag to hold it securely in place. Most of the time I don’t notice it.
As Day 2 of this extended treatment session begins on February 19th, my only symptoms have been a (1) runny nose and watery mouth for about two hours at the hospital yesterday and (2) increased sensitivity to cold in my fingertips. Cold water also hurts the inside of my mouth is I drink quickly. So far my appetite has been fine. I hope I’ll be able to continue enjoying each meal.
Infusion pump removal 2020-02-20
This afternoon, after 46 hours I disconnected the infusion pump needle from my port. It was a smooth process , but the needle didn’t pop into its storage slot. I’ll try to master that last step the next time two weeks from today.
I packaged the used pump assembly with other waste and a short report. I’ll return it to the hospital at my next chemotherapy session.
This three-day process of outpatient chemotherapy requires some time and attention every other week, but the wearable infusion pump enables me to live a fairly normal life as an active man my age (70). I am grateful that I can eat well, enjoy talking with people in English and Japanese, and spend time outdoors walking, cycling, and enjoying photography.
On March 3, 2020, I had my second FOLFIRINOX infusion treatment at the Ambulatory Cancer Chemotherapy Center at Saiseikai Shigaken Hospital (済生会滋賀県病院 外来化学療法センター).
After weighing me in, checking my blood pressure and temperature, and drawing blood for testing, the nurses assigned me to a large reclining chair. I made myself comfortable and took out my iPad so I could read while sitting there most of the day.
Before starting FOLFIRINOX infusion they had me swallow a large capsule that apparently reduces the onset of nausea. Then they connected an IV line to the port installed below my right collar. Using multiple attachments to the line, they dripped a sequence of drugs into me over a period of about six hours.
According to my personal pharmaceutical notebook, my FOLFIRINOX infusion treatment consists of seven stages (RP1-RP7). (Pharmacies in Japan maintain prescription data in patients’ notebooks. Since a patient may use several pharmacies, such notebooks may help avoid over-medication or dangerous combinations of drugs.)
In the final stage of chemotherapy they attached a timed-release capsule to my port. I wore the capsule in a pouch attached to a neck strap for 46 hours and then detached it at home.
Fortunately, in my case the side effects (副作用) of FOLFIRINOX are not bad. During treatment I had a runny nose for about 90 minutes, but I did not experience any nausea or bowel problems. My appetite was fine, and I enjoyed a sandwich and banana for lunch.
The only serious side effect that I notice is the sensitivity of my fingertips to cold. When I touch cold surfaces, I feel sharp ice particles hitting my fingertips, like sleet in strong wind. If I try to drink cold liquids quickly, I have a similar sensation in my mouth. Normal activities such as opening a door or washing my hands in cold water become painful. Fine motor control is pretty hard, for example, when operating a camera.
Tehara Clinic 2020-03-05
On March 5 I visited my general practitioner at Tehara Clinic (てはらクリニック). My medical treatment is divided into cancer treatment at Saiseikai Shigakan Hospital (済生会滋賀県病院) and general medical treatment at Tehara Clinic, where I have been going for many years. My doctor at Tehara Clinic monitors my overall health and prescribes medication to control my blood sugar. (When I first felt symptoms of pancreatic cancer in early May, 2019, he saved my life by immediately referring me to specialists at the hospital.)
According to my doctor, I’m doing very well. I had hoped to gain weight more quickly, but apparently weight gain is really difficult after Whipple surgery (doctors removed 20% of my stomach). We agreed that keys to continued health include eating and sleeping well, exercising, especially walking a lot, and just enjoying daily life.
On March 17, 2020, I had my third FOLFIRINOX infusion treatment at the Ambulatory Cancer Chemotherapy Center at Saiseikai Shigaken Hospital (済生会滋賀県病院 外来化学療法センター).
After weighing me in, checking my blood pressure and temperature, and drawing blood for testing, the nurses assigned me to the same large reclining chair that I used on March 3rd. As before, I made myself comfortable and took out my iPad so I could read while sitting there most of the day. Unlike last time, there were many early morning patients, so I had to wait until after 11:30 to start treatment.I visited the hospital dentist, who became my dentist on March 3rd. For many years I went to Kyoto Prefectural Medical University Hospital, but on their advice I transferred to Saiseikai Shigaken Hospital (済生会滋賀県病院) after beginning FOLFIRINOX chemotherapy. My new dentist reads my detailed medical records on the hospital computer system and consults my GI doctor before doing any major dental work.
Consultation with my GI doctor was quick and uneventful. Blood tests showed a little rise in one cancer marker and a little drop in another. I lost half a kilogram in two weeks of frequently bad weather, and I suffered mild diarrhea a week ago. Skin condition improved with ointment. I’ve used half of the prescription filled on March 3rd, so no prescription was needed this time. My fingertips remain very sensitive to cold with just a little relief at the end of each two-week chemotherapy cycle. The doctor told me I’m doing well and advised me to stay warm and keep doing what I’m doing now with more walking if possible. Chemotherapy infusion went very smoothly after a late start. Unlike last time, I had only a very slight runny nose in late afternoon. Nurses and a pharmacist often asked, “How are you doing?” Each time I was fine, which seemed pleasantly surprising to them.
Chemotherapy lasted until 17:40. Since the automated payment system closes at 17:00, I had to pay at a room near the emergency emergency entrance. Ironically, there was no fee for my chemotherapy session or consultation with my doctor (because of a monthly cap on expenses for cancer treatment?), but I had to pay ¥160 for consulting my dentist.
The pharmacy that fills my prescriptions closes at 17:30; however, a chemotherapy nurse called them at about 16:30 and asked them to stay open for me. I walked to the pharmacy after 17:50, long after closing time. The place was closed and locked, as I had expected, so I called the phone number beside the door. A young man answered and told me to wait there after I told him my name. Soon he came trotting along the side of the building and then took me back to the rear service entrance. I sat on a stool in the storage area while they filled my prescription. Another pharmacist brought my medicines, confirmed that I knew when to take them, took my payment, and gave me a receipt. When I thanked her for such kind and considerate service, she thanked me and consoled me for sitting through a long day of chemotherapy.
After a very long day of sitting, talking, reading, receiving powerful drugs, getting a timed release device installed as before, paying my little bill, and getting my prescription filled by kind pharmacists, I retrieved my bicycle from the hospital bike parking lot at about 8:15, turned on my lights, and rode home home, arriving a little before 18:30. Hopefully, next time on March 31st will end much earlier!
Outpatient chemotherapy with FOLFIRINOX is serious, time-consuming treatment, but competent, friendly nurses and other staff made the long process as painless and pleasant as possible. Good ebooks on my iPad relieved boredom, and chats with staff enabled me to enjoy warm and positive human relations all day. At the end of the day a few kind words by a young pharmacist long after closing time reminded me that altruism and compassion are alive and well among young professional workers in Japan.
March 31st went smoothly with a visit to my doctor and the hospital dentist, and then chemotherapy for most of the day. The hospital is now quiet in the afternoon.
Since the emergence of COVID-19 has become a source of anxiety, hospital officials have been limiting entrance to patients and discouraging unnecessary appointments. Most outpatient consultations are in the morning, and with few patients in the afternoon, the place is nearly deserted.
I spent most of the time sitting and reading in the Chemotherapy Center, but I was able to wander around the 3rd floor when I got bored. The views outdoors were not great on this gloomy day.
Fortunately, I had plenty of time to go to the pharmacy after my chemotherapy session, and I got home before dark.
Tehara Clinic 2020-04-02
My primary care physician agrees that my long-term prognosis is not good. We talked about maintaining a high quality of life in the coming month: eat well, sleep well, exercise, live fully each each day.
CT Scan 2020-04-13
On Monday afternoon, 2020-04-13, I had a dynamic CT scan at Saiseikai Shigaken Hospital (済生会滋賀県病院). Preparation with an IV line for the contrast agent and the scan itself went smoothly.
After the scan my blood pressure was high, so my nurse suggested that I sit and rest for a while. The intake and follow-up room was full, so she had me sit in the men’s changing room off to the side of the main room.
I spent time reading as I waited, and time passed quickly. Now and then the door would open, and I could see that nurses and other staff were extremely busy.
After nearly an hour my nurse noticed me from the doorway and realized that she had forgotten that I was there! She grabbed my arms and shoulders as she begged for forgiveness. Of course, I forgave her and tried to express my gratitude to her and her fellow nurses around the world. No social distance.
This morning my GI doctor delivered disappointing news. As I had feared, my CT scan on 2020-04-13 clearly showed cancer growing in my liver. Markers in blood tests also show that cancer has been growing. Metastatic pancreatic cancer is living up to its lethal reputation in my body, and at this rate my life will be very short without more aggressive treatment.
Chemo dosage increased
My mFOLFIRINOX dosage was raised from 70% to 90% of maximum beginning today. My GI doctor, nurse, and pharmacologist all warned me that side effects will almost certainly increase.
Chemotherapy takes most of the day for a long sequence of medications.
At the end of the chemotherapy session the nurse attaches a timed-release capsule to my body after a doctor inserts a needle into the port below my right collarbone. The tubing is taped down and the capsule is placed in a mesh bag with a draw string around my neck. I raise the capsule to my sternum and put my t-shirt over the bag. It stays in place for at least 46 hours, after which I remove the needle, tubing, and capsule. I return all the materials with a short report at my next chemotherapy session two weeks later.
Since chemotherapy is an all-day session, patients eat lunch while we receive medication. I take a pot of coffee, a yogurt drink, a banana, and a sandwich that my wife makes with home-made bread. For a chemotherapy patient I eat very well!
So far I have been been fortunate, with no side effects other than a little fatigue, dry skin, and fingertips very sensitive to cold. Probably these will increase. I hope the increased dosage does not significantly reduce my appetite and pleasure of eating, as reported by many chemotherapy patients. We shall see.
A long day
Today I was at the hospital from 08:35 until after 17:00. Before beginning chemotherapy I had a temperature check and a weigh-in before going to my station. There a nurse took my temperature again, checked my blood oxygen level and blood pressure, and then drew a blood sample. I visited the hospital dentist for a few minutes for a few minutes around 9:30 and then consulted with my GI doctor at around 10:00.
I seem to be doing very well with the increased dosage of mFOLFIRINOX that began in my previous treatment session (2020-04-14), so the doctor prescribed the same dosage. I went back to my station and waited. Finally, just before 11:00, a young doctor inserted a needle with an IV line into the port under my right collar.
The view from my treatment station is just a TV set and a curtain. Visually it’s really boring.
Chemotherapy Center soundscape
In contrast to the subdued visual field, the Chemotherapy Center is very noisy with a rich soundscape.
I recorded a quasi-binaural stereo field with small microphones fed into a small Sony PCM-M10 audio recorder held between my knees.
My nurse came to my station to prepare IV lines for my first set of chemotherapy drugs while I was recording. As she checked connections and central line to my port, I had to hold my mic cables out of her way.
I apologized and explained the use of a cycling skull cap instead of clips (01:46–02:15, photo below). Then she confirmed that I had communicated clearly with my GI doctor and reminded me to tell her if I had any questions (02:18–02:33). After connecting several containers of drugs on IV cart racks to the central IV line, she called a supervising nurse to confirm that all lines were properly connected and that the drip rate for the first one (glucose) was correct (02:34–02:49). She told me that the first actual chemotherapy infusion would begin in 30 minutes as they left and closed the curtain in front of my chair (02:50–02:56).
Audio recording and post-processing
To create a stereo soundscape I recorded with a small Sony PCM-M10 recorder, which is no longer produced. I tried to create quasi-binaural field to emulate human hearing by placing Micbooster Clippy Stereo EM172 microphones on my ears. I covered the mics with foam and then Rycote Windjammer faux fur and held them in place by tucking them under a cycling skull cap.
Audio post-processing was done with Audacity on Fedora Workstation, a Linux system running on a Lenovo ThinkStation 20 computer. I trimmed these excerpts from longer recordings and raised the overall volume. No other digital signal processing was done.
CT Scan 2020-05-11
A dynamic CT scan and blood test on May 11 proceeded normally without any side effects other than a metallic taste as the contrast agent flowed through my blood vessels.
For my chemotherapy session at Saiseikai Shigaken Hospital (済生会滋賀県病院) I checked in early at 08:39, but chemo infusion did not begin until about 11:30, after visiting my dentist and waiting for consultation with the GI doctor, who supervises my cancer treatment.
I was at the hospital until about 17:30. The dispensing pharmacy across the street stayed open for me and another patient after 17:30 because our nurses had called ahead to let them know we would be a little late. I got home at about 18:00.
Cancer has grown in liver
Dr. Shigematsu, the GI doctor who supervises my treatments, showed me the results of my CT scan and blood tests on May 11. Cancer is clearly spreading in my liver, and blood test markers for cancer continue to rise.
Even with my high dosage of mFOLFIRINOX, chemotherapy is not effectively inhibiting the return and spread of pancreatic cancer after my life was extended with major surgery, a pancreaticoduodenectomy – Whipple procedure (膵頭十二指腸切除術) on July 24, 2019.
Surgical treatment plan
During my consultation with my GI doctor on May 12, he held a phone conversation with a radiologist. After reviewing images of my May 11 CT scan, they concluded that non-invasive surgery can slow the growth of cancer in my liver.
The surgical procedure will be transcatheter arterial chemoembolization (TACE). In Japanese the procedure is called 動脈塞栓 (どうみゃくそくせん). Dr. Yasuaki Arai explains in detail (https://cancer.qlife.jp/liver/article252.html).
On May 25 I will have another CT scan, an X-ray, and a EKG. On May 26 I will check in as an inpatient and have surgery on the 27th or 28th.
Surgery to extend QOL
Given the extremely low survival rate for pancreatic cancer, my recurrence of cancer in my liver seems fairly typical among people whose lives have been extended by a Whipple procedure.
So far I have survived more than a year after cancer revealed itself with abdominal pain and jaundice. Hopefully, non-invasive surgery with a catheter (カテーテル) will give me a few more months to experience life with a relatively high quality of life.
On May 27th, 2020, I underwent non-invasive surgery to slow the growth of cancer in my liver. The surgical procedure is called transcatheter arterial chemoembolization (TACE); in Japanese, 動脈塞栓 (どうみゃくそくせん). The procedure was done in the Radiology Department of Saiseikai Shigaken Hospital (済生会滋賀県病院).
Tests & consultation 2020-05-25
On May 25th (Monday) as an outpatient I had a CT scan, an abdominal X-ray, and an electrocardiograph (EKG). For the CT scan I had stopped taking metformin (for blood sugar control) on Saturday, May 23. (Similar contract agents are used in TACE surgery, so I did not resume metformin until Saturday, May 30th.)
A staff member of the Radiology Department gave me a pamphlet and a detailed and accurate 30-minute explanation of the TACE procedure. (When they performed the surgery on May 27, everything proceeded as she had explained.)
Consultation and hospitalization 2020-05-26
On May 26th (Tuesday) my wife, Aya, and I talked with Dr. Shigematsu, the senior GI doctor who supervises my cancer treatment. Unfortunately, the cancer in my liver has spread in a short time, but it still can be treated with TACE surgery. I will undergo surgery and resume mFOLFIRINOX chemotherapy at a later date since I cannot do both at the same time. This cancer seems to be really aggressive.
After consultation with Dr Shigematsu, my wife and I went to the Inpatient Intake Center, where we submitted paperwork and signed some forms. At about 14:45 Aya went home and I followed a staff member to Ward 9 East on the ninth floor, where I have stayed a handful of times. A nurse took me to Room 910, the last room on the left side of the northeast corridor. My bed is along the window on the right side, my favorite of the four locations in the room. The view is nice, and the sun never hits my face directly.
As I unpacked and settled in, nurses drew blood for tests and brought compression socks to help prevent deep vein thrombosis during and after surgery. I’ll put them on when I change into a surgical gown just before surgery. Several nurses who already know me well dropped in to greet me and wish me well. Nice people!
My dentist came to my room to discuss the timing of my denture upgrade, which we had been discussing for nearly two months. After I return to outpatient status, he’ll consult with Dr Shigematsu regarding a good date for dental work.
TACE surgery 2020-05-27
TACE surgery was scheduled for early afternoon on May 27th, so I was allowed to eat a light breakfast and proceed with my normal morning routine. My nutritionist dropped by to chat and to measure the circumference of my calves. Apparently I have lost a little muscle mass since the last measurement in January, but she attributed the change to a lack of exercise. She encouraged me to keep my present high-protein diet of at least 2000 kcal per day.
A little after 11:00 a nurse started an IV drip in my left arm after inserting the needle with some difficulty. After about 45 minutes I noticed that my arm was swollen above the needle, so I pressed the nurse call button. Another nurse came and removed the needle. After a while several nurses appeared. One who appeared more experienced than the others finally inserted a needle in my right arm, and they restarted my IV drip. My left arm remained swollen for several days.
At 13:00 nurses began my preparation for transcatheter arterial chemoembolization (TACE); in Japanese, 動脈塞栓 (どうみゃくそくせん). Urinary catheterization was extremely painful. The first attempt to insert a catheter failed, so the catheter was removed. I was given a few minutes to rest while they prepared a second catheter. At first that catheter also failed to reach into my bladder, but an experienced nurse took over and pushed it in deeper with more force. I felt immediate relief as my bladder began to drain through the catheter. After they successfully catherized me, nurses helped me put on adult diapers and compression socks.
At about 13:30 my ward nurse escorted me to a treatment room in the Radiology Department on the ground floor of the hospital. (I had been treated in the same room by the same staff when I had a chemotherapy port installed in January.) The TACE procedure lasted until a little after 15:30. I was fully awake since they used only local anesthesia on my right inner thigh in order to insert the catheter into my femoral artery. Six large flat-screen monitors, above the operating table to my left as I looked up, showed my vital signs, X-ray and CT scan photos, and progress of the catheter in my arteries. Most of the time my view was blocked by a nurse, but sometimes I could see the catheter as it moved in my body. Regardless of my condition, it was fascinating to watch!
The TACE procedure required access to my femoral artery through an incision in my right groin. While the incision is healing, the right leg must not be moved for about six hours.. After my TACE procedure I was fitted with a full-length brace that immobilized my right leg. Then my ward nurse came to the treatment room with my bed from Room 910 in Ward 9 East. After she took me back to my room, I was ordered to lie flat on my back, where I remained from about 16:00 until Dr. Yonekura came at about 20:30. He checked my dressing, assessed the healing process, removed my left brace, and told me to avoid moving my right leg.
Since I could not eat just after my TACE procedure, my supper tray was saved at the 9 East Staff Station and brought to me after Dr. Yonekura checked my progress. My supper included both broccoli and pineapple, which I’d told the nutritionist and my day nurse that I liked. Perhaps I got a personal special order! Of course, the broccoli sauce was not real mayonnaise, so I added Kewpie mayonnaise, and the barley rice (麦ご飯) needed furikake. The fish (ぶり) was good, but there was not much of it. Soybeans on the side were okay but without much taste. After supper I was still hungry, but I was not allowed to get out of bed. Fortunately, I could reach a bag of goodies beside my bed. I had a packet of Balance Power (butter) and a gel pack of Amino Vital energy drink. Finally, after that snack and some reading, I fell asleep some time before midnight.
TACE follow-up 2020-05-28
The day after my TACE procedure, May 28th (Thursday), began with a blood draw and then an insulin shot. As with a dynamic CT scan, for a few days before and after the TACE procedure I could not take medicine to control my blood sugar (metformin). During that time nurses checked my blood glucose level before each meal and then injected insulin if necessary. Fortunately, I needed insulin only once. Before breakfast I began to take kampo medicine ハンゲシャシントウ (半夏瀉心湯) between meals. The ward pharmacist said it’s good for diarrhea, so I should take it 2 or 3 times a day when I’m hungry.
After breakfast Dr Yonekura and nurses checked the incision over my femoral artery. Apparently it’s looking good, but I still have to be careful. The incision is in a really dangerous location, probably the most vulnerable place for blood loss on the human body. Dr Yonekura said the damage to my liver is less than he had expected, and blood test numbers for liver function(s) are quite good, all things considered. Blood glucose was high this morning, but that’s normal since I stopped taking metaformin last Saturday (5/23). I will resume metaformin next Saturday (5/30).
At 10:00 A nurse removed my compression socks and put them back in the package for me to keep. Then she had me stand and walk in place to confirm that I could get around okay. At that time I gave myself a balance test (stand 30 sec. on one foot) and passed. Soon another nurse removed my urinary catheter. What a relief! My first pee in the toilet after the catheter removed was very painful at first and then normal again.
After lunch I took some photos of outdoor scenery from the two lounges on the 9th floor. Later I transferred the photos from my compact camera to my iPad and then uploaded them to Flickr.
In the West Lounge an old guy in a powered wheelchair had his IV line and an A/C extension cord tangled up in a wheel. I told him to stop moving and just wait while I went out and found a nurse to help him. She had quite a struggle to untangle the line and cord while trying to keep him from moving. He seemed to think he could drive his way out, and he got irritated when she showed him one of the many knots he’d made.
Later in the afternoon my IV line got blocked, with blood backed up almost 50 cm from my arm. After some effort, nurses cleared the line and left my arm disconnected from the IV cart for a while. After a nurse washed my hair (a very short job!). I cleaned myself with with warm, damp towels, and then changed out of my surgical gown into regular pajamas.
After I got back into a regular hospital routine with my own clothes and some mobility, I was able to enjoy watching videos and listening to podcast episodes that I’d saved on my iPad. The hospital has no Wi-Fi service, and my 4G data plan does not allow much downloading.
TACE recovery 2020-05-29 to 2020-06-05
On May 29th (Friday), the 2nd day after my TACE procedure, nurses removed my glucose IV drip. The IV needle in my arm will be connected to an antibiotic IV drip only for short periods each morning and evening for a few days. I developed a fever of 38.3 degrees, but Dr Yonekura said short fevers indicate healing so I need not worry.
Hospital food becomes an issue after a few days. The main source of nutrition for every meal is plain barley rice (麦ご飯). Furikake is rarely provided. Green vegetables often are served with some kind of “dressing” that to me tastes like rancid vinegar. I’ve learned from experience that I can eat everything on my meal tray by adding furikake and mayonnaise from home. But even with these additions I often feel hungry. The menus that come with the meal trays show that I get a little less than 1900 kcal per day, which leaves me hungry every night. Since I am free to move about without the burden of an IV cart, after supper I go to Lawson on the 2nd floor and buy supplemental food. I like their hot chicken (L-chiki), milk, yogurt, and simple bread items such as butter rolls. Also, on the 1st floor we can get “premium” coffee (￥200) from a vending machine.
On May 30th (Saturday) my body temperature remained unstable, rising from 36.9 in the morning to 38.3 in the afternoon and 38.7 in the evening. Since the TACE procedure I had on May 27th introduced a risk of dangerous infection in my liver, I suppose I’ll have to stay in the hospital until my temperature stabilizes. In the morning I fell asleep while receiving an antibiotic IV drip. When I woke, I noticed IV fluid in a large puddle on the bed beside my arm. I called for help, and a nurse came quickly. She removed the IV needle from my left arm and later inserted a new IV needle into my right arm. Another nurse cleaned up my bed and replaced the sheets.
May 31st (Sunday) was uneventful. I spent a lot of time reading and received antibiotics in one-hour IV drip sessions at about 10:45 and again at 22:00. My body temperature varied between 37.5 and 37.9 degrees.
June 1st (Monday) morning blood test results looked good, but my body temperature still varied from 36.9 to 38.2. Dr Yonekura continued to prescribe antibiotics by IV drip as he watched for signs of infection. On the same day I received some very sad news. My best friend, a former colleague, had died on May 9, 2020. There was no public wake or funeral for him. Rest in peace, old friend.
On June 2nd (Tuesday) before breakfast I had a resting metabolic rate (RMR) test. The printout from the test device showed that my actual RMR was 1256. On several web sites I had similar scores around 1270-1290 for calculated RMR based on sex, age, height, weight, and estimated activity level. Before this test I knew nothing about RMR, so it was an interesting discovery. The twice daily antibiotic IV drip ended on June 2nd. I was relieved when my night nurse removed the IV needle from my right arm at 23:15.
On June 3rd my body temperature still varied (37.0–38.6). Doctors wanted to be sure that my liver is clear of infection, so they ordered a CT scan on June 4th. I stopped taking metformin from mid-day June 3rd through June 6th because metformin might interact with the CT scan contrast agent and cause kidney damage. Just before supper my temperature was 38.6. The nurse said I needed fever medication for a temperature over 38.5. She brought 2 tabs of カロナール (Calonal, acetaminophen) 200mg while I was eating supper. For a couple of days I’d had to get up to pee very often from midnight to dawn, so I felt tired from lack of sleep.
On June 4th my body temperature varied from 36.9 to 37.7, lower than previous days. Blood was drawn for tests before 08:00. My CT scan was scheduled for early afternoon, so I had a light breakfast and no lunch. Later in the morning a nurse had trouble inserting an IV needle for my CT scan. (During a dynamic CT scan a contrast agent is injected directly into the bloodstream via an IV drip.) After the first needle broke in a vein in my left arm, he inserted the second needle into a vein in my right arm. He said that was the first time he had broken a needle for an IV drip. The ordeal was painful but mercifully short.
The CT scan at about 14:00 was uneventful and quick. My lunch tray had been saved by nurses at the 9 East Staff Station, and I was able to eat at about 14:30. Later in the afternoon Dr Yonekura reported that the CT scan showed no signs of infection in my liver. Blood test results also looked good, so he ordered my discharge on June 5th at 10:00.
On June 5th I was to be discharged at 10:00, but I was frustrated by slow paperwork and delays while trying to pay my bill. The last delay was interesting, though. Just as I finally neared the cashier’s counter to pay, an older man hurried in front of me and then moved slowly and carefully. As I looked over his shoulder, I saw his huge bill for about￥300,000. From a small handbag he drew out a stack of ￥10,000 notes. He and the cashier counted them out one-by-one as he put them in the money dish on the counter. The process took a long time, but it was interesting to see someone pay such a large sum in cash. Eventually I left the hospital at about 11:30 and took a taxi home.
Resting and relaxing 2020-06-06
After getting out of the hospital on June 5, I spent more than two weeks recuperating and relaxing without any cancer treatment. Hospitalization sapped my energy more than I had expected. For at least a week it was hard to get up and do anything, but I gradually recovered energy and stamina. In any case, it’s great to eat home-cooked meals, have my own space, and go wherever I want!
Abraxane® and Gemcitabine
My current chemotherapy drugs are Abraxane® (nab-paclitaxel) and Gemcitabine. I have completed the first four-week cycle with three weekly infusions beginning 2020-06-23 followed by one week off. Blood test results indicate that this regime has been more effective than mFOLFIRINOX.
Abraxane® and Gemcitabine side effects include fatigue, fever, loss of appetite, nausea, and diarrhea. Fortunately, I have been able to enjoy eating , with a good appetite and lack of nausea. Unfortunately, fever and fatigue follow each infusion for several days. Getting up to take a walk is difficult at those times.
Japan’s long rainy season in June and July 2020 contributed to my lack of physical activity. Along with fatigue from chemotherapy, the weather discouraged cycling and other outdoor activities. The second cycle of chemotherapy was postponed for a TACE operation on 2020-07-30.
A clear description of the Abraxane® and Gemcitabine regime is at Chemo Experts.