Myeloma transplant - Days -06 to 11

This is a daily diary of my autologous stem cell transplant (ASCT) for multiple myeloma compiled from my diary and my own recollections.
My ASCT daily diary is over 4 postings, this is posting 2 of 4; days 06 to 11.
Link to posting 1; Days -02 to 05

Day 06:
Good sleep.
Nausea still present, worse from mid-day to 3pm, this left me down a lot and weepy.
Taking in small amounts of food and fluids. Central line redressed.
IV fluids continuing. Temperature spiked at 38C this evening.
Concentration reduced, stopped playing Sudoku and reading is difficult except in small bursts. Myra’s visits and help very much appreciated.
Bowels in full use. A bad day.
Treatment/medication: Panadol, Clexane, Temazepan, Ativan, Allopurinol, Vitamin C, Gentamian, [Anti-nausea: Maxalon x4, Zofran x2, Cyclizure],
[Antibiotics: Acyclovir x2, Cefpirone].
Weight 67.15kg (148 lbs)

Day 07: White bloods hit zero.
Average sleep. Feeling not too well this morning, more nausea.
Temperature dropping, blood pressure stable.
Had more anti-nausea medication then taken for a chest x-ray, all OK.
Got up after x-ray, felt well when up.
No control over motions, a cough or sneeze would cause a motion, diarrhoea has arrived. Slightly better later in the day. Took codeine for bowels.
Change for the worse in the mouth and throat, mouth care continues.
White bloods <0.1 at the bottom. My visualisation scenario puts me in the swamp at the bottom of the valley. IV fluids continuing. Treatment/medication: Panadol x2, Clexane, Temazepan, Ativan, Vitamin C, Gentamian, Codeine x2 [Anti-nausea: Maxalon x3, Zofran, Haloperidol x2], [Antibiotics: Acyclovir x2, Cefpirone]. Red bloods 3.59; white bloods <0.1; platelets 77; weight 66.30kg (146.2 lbs)
Link: Myeloma Transplant - Diarrhoea.
Link: Myeloma Transplant - Visualisation

Day 08: Mucositis increases.
Good sleep, Maxalon infusion at 4am, feeling not too good.
Mouth and throat mucositis kicking in. Keeping up the teeth cleaning and mouth wash routine. IV fluids continuing.
Poohed pants 3 times, taking pills to stop.
Dry skin is evident so Myra put moisteriser on me all over. Previously I was applying it on face and hands and using lip balm regularly.
I am concerned about steroid welts/rash.
Managing to eat yoghurt and resource drink supplied by the hospital.
Good sleep/rest in afternoon left me feeling better.
Dull headache at late evening.
Treatment/medication: Clexane, Temazepan, Gentamian, Codeine x3
[Anti-nausea: Maxalon x2, Zofran, Haloperidol x2].
[Antibiotics: Acyclovir x2, Cefpirone x2].
Weight 67.2kg (148.2 lbs)
Link: Myeloma Transplant - Mucositis.
Link: Myeloma Transplant - Dry skin

Day 09:
Average sleep and a strange dream overnight.
Temperature up, first day of significant weakness/tiredness = fatigue, times are getting tough.
Still on the drip. Appetite has gone, sipping lemonade ice blocks that are rather tasteless.
Rash (folliculitis) is wide spread, not itchy or hot. It may be a reaction to antibiotics.
Vicky and Myra stayed to encourage me with food and drink. Frequent sips and small amounts of food often, forget breakfast/lunch/dinner.
Perked up in late afternoon and evening. Temperature had lowered.
Headache at bedtime, took liquid Panadol and tempazem, better after.
Treatment/medication: Panadol x2, Clexane, Temazepan, Vitamin C, Gentamian, Codeine x2, [Anti-nausea: Maxalon x3, Haloperidol x2].
[Antibiotics: Acyclovir x2, Cefpirone x2].
Red bloods 2.97; white bloods <0.1; platelets 19; weight 68.0kg (150 lbs)

Day 10: Hair loss noticeable.
Woke OK, temperature still up. Nausea again so took Maxalon.
Felt uneasy from throat down to gut, a bit like indigestion.
Haemoglobin low so had to have a blood transfusion, first one ever. Went OK, temperature went up and down over the 5 hours of transfusion. Felt good at end.
Bad diarrhoea in the afternoon.
Felt more like eating dinner, first for a long time, only ate a little.
Throat/nausea seems better, mouth still a bit rough with mucositis.
Hair loss becoming noticeable. Wearing a beanie or cap to limit heat loss.
Temperature up in the evening.
Treatment/medication: Panadol x2, Clexane, Temazepan, Gentamian, Codeine x2 [Anti-nausea: Maxalon x3, Haloperidol].
[Antibiotics: Acyclovir x2, Cefpirone x2]
Red bloods 2.84; white bloods <0.1; platelets 22; weight 67.85kg (149.6 lbs)
Link: Myeloma Transplant – Hair loss

Day 11:
Average sleep, no pills or sedatives which were my choice.
Temperature was down this morning.
Mouth and throat feel a bit worse. First time I have felt the throat entry.
Nausea today is minor, only using Maxalon to control it.
Rash still present but not itchy.
Tired in afternoon, slept one and half hours while Myra was here.
Temperature was up at 5pm, Nurse took a culture then more sleep.
Treatment/medication: Panadol, Clexane, Temazepan, Gentamian,
[Anti-nausea: Maxalon x3]. [Antibiotics: Acyclovir x2, Cefpirone x2].
Red bloods 3.77; white bloods <0.1; platelets 28; weight 66.90kg (147.5 lbs)

Myeloma transplant - Dry skin

Chemotherapy, effects of stem cell transplant and air conditioning are causes of dry skin. For me this was on the face and back of hands and to a lesser extent on my legs. During transplant I used the recommended moisturiser and soaps daily and a lip balm day and night. Keeping my fluids up during transplant to help dehydration was difficult needing me to be given fluids intravenously.
Dry skin continued for about 6 months after both transplants then slowly reduced but is still present. After experimenting with moisturisers I now use an Emu oil based moisturiser which suits my dry skin. It seems to penetrate deeper and lasts longer.

Sid uses lippy!
Yes it’s true, Sid uses lipstick. Well lip balm, still the same?
All my life I have had to be careful in the outdoors due to my fair complexion. Too much sun or wind sees my lips dry out, crack and start to develop cold sores or chaffed lips.
Since myeloma arrived I have regularly used a lip balm to keep my lips moist.
While on chemotherapy or in hospital I used my lip balm three or four times a day. Now it’s several times a week or when outside.
Since using my lippy regularly I have not had cracked lips or cold sores.
I favour the flavoured lip balm, strawberry or lemon.
Excuse me now; I need to apply my lippy.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

VAD for myeloma, end of third cycle

A summary of the end of my VAD cycle 3 Monday 10th September 2001, treatment for myeloma.
My response to VAD and Aredia after the third 28 day VAD cycle was again excellent.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
IgG at end of cycle 3 = 21.6 g/L
All other test results were normal.
Dexamethasone was reintroduced in this cycle causing sleep disturbance, mood swings and bouts of hiccups. I had to use sleeping pills to get good sleep. Experienced an outbreak of acne type blemishes on the face and neck which was thought to be dexamethasone related and treated with a prescription ointment and eventually cleared.
Hair loss has thankfully stopped but dry skin and lips continued though not as bad as cycles 1 and 2.
Nausea was experienced for the first 10 days again reducing my appetite so I resumed the Maxolon. After 11 days nausea was gone, Maxolon stopped and the appetite was coming back again.
Bone pain was definitely reduced, I was more flexible, walking briskly and feeling physically stronger. The big news was I could now sleep on my sides, a big step forward for me. My slow release morphine Kapanol 20 was reduced to Kapanol 10 after week 2. For two evenings after stopping Kapanol I experienced restless legs lasting an hour while trying to sleep, a morphine withdrawal symptom. Two panadol every four hours was still continued and I only had to use the liquid morphine for break through pain 5 times this cycle.
There was some constipation during the first two weeks overcome by using Coloxyl laxative.
Work was increased to 6 hours per day.
Life was starting to get back to normal again.

VAD for myeloma, end of second cycle

A summary of the end of my VAD cycle 2 Monday 13th August 2001, treatment for myeloma.
My response to VAD and Aredia after the second 28 day VAD cycle was again excellent.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
Bence-Jones protein negative, full blood count and other tests normal.
This cycle had no dexamethasone.
My hair loss this cycle was limited to the crown; my beard became patchy so I trimmed the beard back to a No1.
Nausea was experienced over the first 8 days then tapered off so I stopped the Maxolon on day 9. Following that I only had to use it on 3 other isolated days which was reflected in my appetite returning for the remaining 3 weeks.
Eyesight deterioration, dry skin and dry lips were still present though no worse than cycle 1. There were still no mouth or throat issues from chemo.
During the last 2 weeks of cycle 2 there was a noticeable reduction in bone pain. (6 to 8 weeks after initial VAD and Aredia). I was becoming more flexible and less restricted by bone pain. This was noticed when getting in and out of the car, being able to reach out and up and pick items off the floor. The liquid morphine for break through pain was used less this cycle. I was still using Kaponal 20 morning and evening plus panadol during the day. Pain was still present, over the final 2 weeks not as intense.
I had returned to work part time midway through the first cycle for 4 hours per day increasing this to 5 hours per day at the end of cycle 2. My occupation is a structural draughtsperson using CAD on a computer in an Engineering design office so there is no physical involvement that would be restricted by myeloma. Every second day I rested for 30 to 60 minutes on arriving home from work, just lying on the bed dozing or sleeping and resting my body.
Night time sleep was much better this cycle without the dexamethasone. I never had to use a sleeping pill at all. I still could only sleep on my back, the restriction there was rib pain.
I developed the first symptoms and signs of a hernia this cycle, not thought to be myeloma related.
My emotions were still up and down and it didn’t take too much for the tears to flow.
This cycle I resumed my walking for exercise, 30 minutes each day when I could and longer in the weekends, also resumed minor stretching.

VAD for myeloma, end of first cycle

A summary of the end of my VAD cycle 1 Monday 16th July 2001, treatment for myeloma.
My response to VAD and Aredia after the first 28 day cycle was excellent. IgG reduced from 80g/L to 26.4 g/L.
Reaction to VAD wasn’t too bad, the mouth and throat were OK, minor hair loss so I had it trimmed back to a No 2 not realising how much heat loss it would give. It was winter so I wore a beanie or cap all the time even in bed.
There was a minor deterioration in eyesight.
Had some constipation so used the Coloxyl laxative successfully.
I suffered hiccups for about 2 hours on 3 days early in the cycle.
Towards the end of the first cycle I started to suffer dry skin and lips so applied moisturiser and lip balm.
It was a struggle to get used to drinking 2L of fluid a day so I used a 500ml water bottle as a guide.
Concentration was down, probably the first indication of chemo brain.
Nausea was an issue very early on, so I used Maxolon all the time and experimented with ginger products. Both helped especially Maxolon but it never went away making eating a problem. Small helpings meant my food intake though reduced was maintained.
What surprised me was the number of pills I had to take in the morning. The maximum was 16 which I took in groups of 4, a new experience and a struggle for me.
Bone pain did not change, the pain relief (morphine and panadol) served its purpose well reducing a lot of pain. Still had to sleep on my back, the ribs and collapsed vertebrae were always a constant dull pain. There were sudden pockets of bone pain elsewhere that liquid morphine was used as break through pain relief.
Dexamethasone made me verbally aggressive, more abrupt and expressive. Mood swings from Dexamethasone were present occasionally during the first cycle. Sleep disturbance was a big issue so I had to resort to sleeping pills.