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 4 of 4; days 16 to 22.
Link to posting 1; Days -02 to 05
Link to posting 2; Days 06 to 11
Link to posting 3; Days 12 to 15
Day 16: Fireworks, what fireworks?
Woken by orthopaedics at 3.0am for spinal chord compression investigation. After a series of tests they said all seemed OK. No weakness, numbness or pins and needles. There was still incontinence today.
Rash stable, nausea reduced by Maxalon, no appetite, cold chills and rigors again in afternoon.
Fatigue started in mid afternoon, lifeless, no energy. I have a fever.
When I got the chills or rigors I asked for extra blankets to keep warm.
In spite of the fever I did 4 minutes on the Exercycle and small stretches in the morning.
That evening adjacent to the hospital was Christmas in the park, an annual Christmas concert finishing with a huge fireworks display. The nurses told me that I would be able to hear the fireworks and see some through my window. Now I am a big fireworks fan, love the noise, couldn’t wait. Unfortunately I was so fatigued I could not raise myself up in bed. Can remember some sounds, that was all.
Treatment/medication: Panadol x4, Clexane, Gentamian, [Anti-nausea: Maxalon x3], [Antibiotics: Acyclovir x2, Meropenen x2].
Red bloods 3.40; white bloods 1.36; platelets 93; weight 66.0kg (145.5 lbs)
Temp 0100---38.8C---101.8F
Temp 0500---37.8C---100.0F (reduced by panadol)
Temp 0900---39.2C---102.6F
Temp 1300---37.2C---99.0F (reduced by panadol)
Temp 1700---38.4C---101.1F
Temp 2100---38.4C---101.1F
Day 17:
High temperature, rigors over night, still fatigue, lifeless, no energy. Rash reducing, thought to be caused by reaction to antibiotic. Had a chest x-ray, all OK. Less fatigue in evening.
Still suffering diarrhoea, nausea and incontinence.
Treatment/medication: Panadol x2, Clexane, Gentamian, [Anti-nausea: Maxalon x3], [Antibiotics: Acyclovir x2, Meropenen].
Weight 66.25kg (146.16 lbs)
Temp 0100---38.5C---101.3C
Temp 0500---39.4C---102.9C
Temp 0900---39.4C---102.9C
Temp 1300---39.2C---102.6C
Temp 1700---37.8C---100.0C (reduced by panadol)
Temp 2100---39.6C---103.3C
Link: Myeloma Transplant Diarrhoea
Link: Myeloma Transplant Nausea
Day 18: Fever reduces.
Ate a little at breakfast and lunch. Still on IV fluids. Bowels not so rumbling with more time between motions. Motions are still loose. Central line redressed.
Feeling better after mid day and as day wore on. Appetite returning in afternoon.
Treatment/medication: Clexane, Temazepan, Gentamian, [Anti-nausea: Maxalon x4], [Antibiotics: Acyclovir x2, Meropenen x2].
Red bloods 3.43; white bloods 1.06; platelets 121; weight 65.15kg (143.6 lbs)
Temp 0100---38.7C---101.7C
Temp 0500---38.2C---100.8C
Temp 0900---37.3C---99.1C
Temp 1300---36.3C---97.3C
Temp 1700---37.7C---99.9C
Temp 2100---37.7C---99.9C
Day 19: Off the IV fluids at last.
Temazepan gave me 4 hours sleep then broken sleep. Headache at 5.0pm treated with Panadol. Temperature back to normal.
Rash is reducing. No more incontinence problem.
Mouth has improved, not painful any more.
Off the drip this morning, “free at last” though back on again this evening.
Weight still dropping. Only feel like eating occasionally and can’t eat a full meal.
Out of the unit with Myra for 70 minutes. Across the road then to Starship and back. Felt weak, sore back, had French fries at the Starship McDonalds. A special fresh supply for the immune compromised. Recovered well.
Appetite getting better as day wore on, overall a big step forward.
Treatment/medication: Panadol x1, Clexane, Temazepan, [Anti-nausea: Maxalon x2], [Antibiotics: Acyclovir x2, Meropenen x2].
Weight 64.7kg (142.6 lbs)
Day 20: Disaster.
Couldn’t sleep again so took Temazepan then OK. Worrying about the central line removal. Felt OK this morning, in good spirits and looking forward to going home.
Registrar said no more drip or anti-biotic required. I’m free, the IV line and frame is so restrictive. Drank 1.7L fluid today.
Central line out today or tomorrow then home the next day.
Walked to Starship then biscuit for morning tea.
Hair loss has almost stopped, head bald, beard thinned out and very patchy, body hair there in places but gone where skin rubs.
Less motions, they are becoming firmer.
A Nurse tried to remove the central line, unsuccessful. Another nurse tried also unsuccessfully.
Registrar tried to remove the central line twice, unsuccessful, had to call up a surgeon. Major drama, local anaesthetic, incisions, burst blood vessel squirting blood everywhere; they had to apply pressure to the wound for 30 minutes, finally stitched up. After all that I had to have 3 lots of plasma.
What happened was adhesion between my central line and skin, they were stuck together and the line eventually fractured. Normally it is a simple task by a nurse to pull the central line out.
Treatment/medication: Clexane, [Anti-nausea: Maxalon x3], [Antibiotics: Acyclovir x2].
Red bloods 3.32; white bloods 2.61; platelets 138; weight 64.7kg (142.6 lbs)
Link: Myeloma Transplant hair loss
Day 21:
Intermittent sleep, not going home today because of yesterday’s drama.
The wound had a new dressing today and feels sore.
My red blood count is down, anaemic, had plasma transfusion.
Rest day.
Treatment/medication: Panadol x3, [Anti-nausea: Maxalon x3], [Antibiotics: Acyclovir x2].
Red bloods 3.04; white bloods 3.93; platelets 166; weight 63.70kg (140.4 lbs)
Day 22: I’m going home.
Panadol at 9.0pm then good sleep. Woke with wound pain at 3.0am, more panadol put me back to sleep.
The wound was not so sore at day break, woke feeling OK.
Discharge today at 11.00am.
I am out of the valley at the top of the climb and can see the golden arches in the distance, my visualisation.
The end of my stem cell transplant hospitalisation, I’m going home.
Only 4 days to Christmas day, going home to be with my wife and family is my Christmas present.
Treatment/medication: Panadol, [Anti-nausea: Maxalon], [Antibiotics: Acyclovir].
Weight 63.25kg (139.4 lbs) a total weight loss of 7.2kg (15.9 lbs).
Showing posts with label Nausea. Show all posts
Showing posts with label Nausea. Show all posts
Sunday, December 6, 2009
Thursday, December 3, 2009
Myeloma transplant - Days 12 to 15
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 3 of 4; days 12 to 15.
Link to posting 1; Days -02 to 05
Link to posting 2; Days 06 to 11
Day 12: White bloods rise.
Bad night, took Temazepan, 2 hours good sleep then disturbed sleep. Woke with headache at midnight, took Panadol. Headache again at 5am again took Panadol. Didn’t sleep well overnight at all.
White blood count rose above 0 today, first rise since bottoming out on day 7.
Mouth feeling better reflected that, major breakthrough there. I am climbing out of the swamp.
Tried to sleep this afternoon, not too successful as woken up 3 times. Feeling better late afternoon.
Nausea setback at 5.45pm to 7.0pm, very strong. Given Maxalon through central line.
Trying to achieve 1.5L fluid intake today, previous average 900ml. IV fluids continue but at a lower rate.
Fluid intake today 1.25L first time over 1.0L, will do better when off the drip during the day.
Temperature up tonight 38.2C (100.8F) at 9.30pm.
Treatment/medication: Panadol x3, Clexane, Temazepan, Gentamian, [anti-nausea Maxalon x3, Zofran, Haloperidol]. [Antibiotics: Acyclovir x2, Cefpirone x2].
Red bloods 4.02; white bloods 0.52; platelets 60; weight 66.60kg (146.8 lbs)
Day 13:
Good sleep to 3.0am, woke with dry mouth. Nausea at 6.0am, had Maxalon. Lots of mucus, better after lots of burps. Temperature 37.8C.
Visit by physiotherapist. Continuing stretching, advised to keep using the Exercycle even if it is only 4 to 5 minutes a day.
Doctor took culture off rash. Nausea again from 1.0pm to 4.30pm controlled by Maxalon. Nausea restricted food and drink, I will do anything to avoid throwing up.
One hour sleep this afternoon. Fluid intake 1.6L today. Temperature 38.2C at 9.0pm.
Treatment/medication: Panadol, Clexane, Gentamian, [Anti-nausea: Maxalon x3, Haloperidol x2], [Antibiotics: Acyclovir x2, Cefpirone x2].
Weight 65.3kg (144 lbs)
Day 14: Fever starts.
Good sleep overnight, mouth and lips still dry. Nurse said dilute the mouth wash and increase the lip balm.
Another nurse hint: for a dry mouth try sucking pineapple. Back on the drip all day.
Feeling hot this morning, cold waves after lunch then feeling cold. After coldness my temperature rose and I got hot again.
Doctor checked me and said we will change my antibiotics. Stop Cefpirone, add Meropenen. If successful the rash will reduce in 2 days.
Felt better in the evening.
This was the start of 4 days of fever. It was a new experience for me to suffer high temperatures, cold chills, rash and debilitating fatigue. My feeling was leave me alone, just let me be sick. I learnt what it was like to be bed ridden. That left me with a better appreciation of what others have told me about their fatigue experiences, easy to listen to, hard to imagine.
Treatment/medication: Panadol x3, Clexane, Temazepan, Gentamian, [Anti-nausea: Maxalon x2, Haloperidol x2], [Antibiotics: Acyclovir x2, Cefpirone x2, Meropenen].
Weight 65.8kg (145 lbs)
Temp 0500---37.8C---100.0F
Temp 0900---38.1C---101.6F
Temp 1300---36.2C--- 97.2F (reduced by Panadol
Temp 1630---38.5C---101.3F
Temp 2020---38.1C---100.6F
Day 15: Incontinence.
Good sleep, up to the toilet for a pee every 2 hours over night.
Still on IV fluids
Tired, sleepy, rigors, fatigue coming on. Temperature up, spiked over the 38C.
Cold flushes after lunch, nausea continues, body rash still present first noted day 5. Antibiotic changed yesterday to see if that is the cause of the rash.
In the evening I did not feel like peeing until I stood up. On standing I could not make it to the toilet and wet my pants each time. The Doctor said ”ah, incontinence”. He tested my reflexes and wanted to get orthopaedics to investigate a link between my collapsed vertebrae and the incontinence.
Treatment/medication: Panadol, Clexane, Gentamian, [Anti-nausea: Maxalon x3, Haloperidol], [Antibiotics: Acyclovir x2, Meropenen].
Red bloods 3.78; white bloods 1.25; platelets 90; weight 66.3kg (146.2 lbs)
Temp 0500---38.1C---100.6F
Temp 0900---38.8C---101.8F
Temp 1230---38.2C---100.8F
Temp 1630---38.7C---101.7F
Temp 1900---38.0C---100.4F
My ASCT daily diary is over 4 postings, this is posting 3 of 4; days 12 to 15.
Link to posting 1; Days -02 to 05
Link to posting 2; Days 06 to 11
Day 12: White bloods rise.
Bad night, took Temazepan, 2 hours good sleep then disturbed sleep. Woke with headache at midnight, took Panadol. Headache again at 5am again took Panadol. Didn’t sleep well overnight at all.
White blood count rose above 0 today, first rise since bottoming out on day 7.
Mouth feeling better reflected that, major breakthrough there. I am climbing out of the swamp.
Tried to sleep this afternoon, not too successful as woken up 3 times. Feeling better late afternoon.
Nausea setback at 5.45pm to 7.0pm, very strong. Given Maxalon through central line.
Trying to achieve 1.5L fluid intake today, previous average 900ml. IV fluids continue but at a lower rate.
Fluid intake today 1.25L first time over 1.0L, will do better when off the drip during the day.
Temperature up tonight 38.2C (100.8F) at 9.30pm.
Treatment/medication: Panadol x3, Clexane, Temazepan, Gentamian, [anti-nausea Maxalon x3, Zofran, Haloperidol]. [Antibiotics: Acyclovir x2, Cefpirone x2].
Red bloods 4.02; white bloods 0.52; platelets 60; weight 66.60kg (146.8 lbs)
Day 13:
Good sleep to 3.0am, woke with dry mouth. Nausea at 6.0am, had Maxalon. Lots of mucus, better after lots of burps. Temperature 37.8C.
Visit by physiotherapist. Continuing stretching, advised to keep using the Exercycle even if it is only 4 to 5 minutes a day.
Doctor took culture off rash. Nausea again from 1.0pm to 4.30pm controlled by Maxalon. Nausea restricted food and drink, I will do anything to avoid throwing up.
One hour sleep this afternoon. Fluid intake 1.6L today. Temperature 38.2C at 9.0pm.
Treatment/medication: Panadol, Clexane, Gentamian, [Anti-nausea: Maxalon x3, Haloperidol x2], [Antibiotics: Acyclovir x2, Cefpirone x2].
Weight 65.3kg (144 lbs)
Day 14: Fever starts.
Good sleep overnight, mouth and lips still dry. Nurse said dilute the mouth wash and increase the lip balm.
Another nurse hint: for a dry mouth try sucking pineapple. Back on the drip all day.
Feeling hot this morning, cold waves after lunch then feeling cold. After coldness my temperature rose and I got hot again.
Doctor checked me and said we will change my antibiotics. Stop Cefpirone, add Meropenen. If successful the rash will reduce in 2 days.
Felt better in the evening.
This was the start of 4 days of fever. It was a new experience for me to suffer high temperatures, cold chills, rash and debilitating fatigue. My feeling was leave me alone, just let me be sick. I learnt what it was like to be bed ridden. That left me with a better appreciation of what others have told me about their fatigue experiences, easy to listen to, hard to imagine.
Treatment/medication: Panadol x3, Clexane, Temazepan, Gentamian, [Anti-nausea: Maxalon x2, Haloperidol x2], [Antibiotics: Acyclovir x2, Cefpirone x2, Meropenen].
Weight 65.8kg (145 lbs)
Temp 0500---37.8C---100.0F
Temp 0900---38.1C---101.6F
Temp 1300---36.2C--- 97.2F (reduced by Panadol
Temp 1630---38.5C---101.3F
Temp 2020---38.1C---100.6F
Day 15: Incontinence.
Good sleep, up to the toilet for a pee every 2 hours over night.
Still on IV fluids
Tired, sleepy, rigors, fatigue coming on. Temperature up, spiked over the 38C.
Cold flushes after lunch, nausea continues, body rash still present first noted day 5. Antibiotic changed yesterday to see if that is the cause of the rash.
In the evening I did not feel like peeing until I stood up. On standing I could not make it to the toilet and wet my pants each time. The Doctor said ”ah, incontinence”. He tested my reflexes and wanted to get orthopaedics to investigate a link between my collapsed vertebrae and the incontinence.
Treatment/medication: Panadol, Clexane, Gentamian, [Anti-nausea: Maxalon x3, Haloperidol], [Antibiotics: Acyclovir x2, Meropenen].
Red bloods 3.78; white bloods 1.25; platelets 90; weight 66.3kg (146.2 lbs)
Temp 0500---38.1C---100.6F
Temp 0900---38.8C---101.8F
Temp 1230---38.2C---100.8F
Temp 1630---38.7C---101.7F
Temp 1900---38.0C---100.4F
Sunday, November 29, 2009
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)
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)
Thursday, November 26, 2009
Myeloma transplant - Days -02 to 05
This is a daily diary of my autologous stem cell transplant (ASCT) for multiple myeloma compiled from my diary and my own recollections.
The transplant was at the bone marrow transplant unit (BMTU), Auckland Hospital, New Zealand, December 2001.
As I had transport difficulties it was decided I would stay in the BMTU for the duration of the transplant. Due to a 4 day fever and complications removing my central line this turned out to be 25 days.
I must stress that this is my experience of my ASCT. Others will differ in protocol, hospital procedures and what their health was at that time. After speaking to others about their ASCT there is a variation in how one coped, we are all different.
My ASCT daily diary is over 4 postings, this is posting 1 of 4; days -02 to 05.
A complete list of links to my previous ASCT postings are at the end of the 4th ASCT posting.
Treatment/medication.
Acyclovir --antiviral (herpes, chicken pox etc.)
Allopurinol: -------decreases uric acid concentrations
Ativan --------------decreases anxiety
Cefpirone ----------antibiotic
Clexane ------------low molecular weight heparin to reduce blood clotting activity.
Codeine ------------to control diarrhoea
Cyclizure-----------anti- nausea
Dexamethasone--------- synthetic corticosteroid (steroid)
Gentamian----------bacterial antibiotic
Haloperidol --------anti-nausea
Maxalon ------------anti nausea
Melphalan high dose melphalan --(chemotherapy)
Meropenen ---------antibiotic
Methylprednisolone -----anti-inflammatory steroid
Panadol ---------------paracetamol based pain relief
Vitamin C
Temazepan ----------sedative
Zofran ----------------anti-nausea
Day -02: First day.
Good sleep at home; woke early.
It is a significant day, the beginning of my ASCT hospitalisation.
Admission to hospital, check in and administration tasks chest x-ray.
Headache in evening given panadol, vomit at 10pm, probably stress and dehydration.
Treatment/medication: Panadol, Clexane, Temazepan, Maxalon.
Red bloods 4.21; white bloods 9.04; platelets 300; weight 70.45kg (155 lbs)
Day -01: Chemotherapy infusion.
Broken sleep overnight, minor headache when getting up.
Felt down this morning, new environment, perked up when Myra arrived, my wife and caregiver.
Chemo in at mid-day, high dose melphalan and dexamethasone.
Saline continual through to mid-day tomorrow. Pass urine into containers for measuring total volume.
Visit by physio, spent time on Exercycle plus talk on what exercises to do. We agreed on Exercycle, stretching, exercises, walk outside, walk in corridors, walk in BMTU. All may be limited by white counts or fatigue.
Nausea started after dinner.
Treatment/medication: Panadol, Clexane, Allopurinol, Zofran, Dexamethasone, High dose Melphalan, Frusemide?.
Link: Myeloma Transplant - Caregiver
Link: <>Myeloma Transplant - Exercise
Day 0: Peripheral blood stem cell infusion.
Last night long time to get to sleep (steroids?).
On saline overnight, nausea pills toned down nausea, don’t feel like eating.
After breakfast 10 minutes Exercycle, walked 30 minutes, stretching.
Stem cell infusion at mid-day, all went well.
Minor light headed for a short while. Myra could smell the preservative, like strong corn.
Having Myra present perks me up.
Stayed up until 11pm watching TV.
Treatment/medication: Clexane, Allopurinol, Dexamethasone, Methylprednisolone, Peripheral blood stem cells, [Anti-nausea: Maxalon, Zofran x2].
Weight 71.05kg (157 lbs)
Link: <>Myeloma Transplant - Stem cell infusion.
Day 01:
Slept reasonable, dozed through to 7.30am.
Started dull headache and sore jaw joint, took panadol but no effect.
Remaining active.
Felt good for 3 hours then down after lunch, felt weepy and emotional.
Nausea, tired, eating little except for soft foods.
Treatment/medication: Clexane, Temazepan, Dexamethasone, Allopurinol, Acyclovir, Dexamethasone, Methylprednisolone, [Anti-nausea: Maxalon Zofran x2].
Red bloods 3.67; white bloods 10.80; platelets 229; weight 69.65kg (153.5 lbs)
Day 02: Food tasting bland.
Bad night, had sleeping pill with little effect, not much sleep at all. First 3 hours no sleep then broken sleep. Became apprehensive again.
Feeling better during day, went for a walk with Myra.
Food tasting bland, smell of some food is offensive.
Steroids keep me awake, last dose tomorrow.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Methylprednisolone, [Anti-nausea: Zofran].
Weight 69.60kg (153.4 lbs)
Link: <>Myeloma Transplant - Food
Day 03:
Good solid sleep 10pm to 7.30am assisted by sleeping pills and sedative.
Felt better all day though susceptible to the occasional drop.
Walked through the corridors to the children’s Starship hospital with Myra to maintain exercise.
Mouth and tongue starting to go off, strange taste.
Still feel weepy at times. A few burps and hiccups today.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Methylprednisolone.
Red bloods 3.46; white bloods 7.76; platelets 187; weight 70.40kg (155 lbs)
Day 04: Diarrhoea underway.
Good sleep with pills again. Woke at 4am with mouth/throat/gut problems. Nausea, dry reaching, mucus, salvia, burping. Had Maxalon then tablets.
Breakfast took a while. Food and drink difficult today. Struggled to eat dinner, took over an hour. Nausea after dinner again so took Zofran.
Diarrhoea underway, rumble, rumble. Gargle tonight included a small throw up.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Dexamethasone, [Anti-nausea: Maxalon, Zofran].
Weight 68.70kg (151.5 lbs)
Link: <>Myeloma transplant - Nausea.
Link: <>Myeloma Transplant - Diarrhoea
Day 05: IV fluids commence.
Good sleep with pills again, woke with nausea.
Today a bad day, too much nausea, was off food. The pills reduced the nausea but it never went away, advised to take anti-nausea medication regularly, I agreed with this.
IV fluids commenced. Still doing exercises.
White counts now dropping, starting to go down into the valley.
Developing a rash, a rash sample was taken.
Felt fatigued.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, [Anti-nausea: Maxalon x3, Zofran x2].
Red bloods 3.80; white bloods 2.09; platelets 140; weight 67.15kg (148 lbs)
The transplant was at the bone marrow transplant unit (BMTU), Auckland Hospital, New Zealand, December 2001.
As I had transport difficulties it was decided I would stay in the BMTU for the duration of the transplant. Due to a 4 day fever and complications removing my central line this turned out to be 25 days.
I must stress that this is my experience of my ASCT. Others will differ in protocol, hospital procedures and what their health was at that time. After speaking to others about their ASCT there is a variation in how one coped, we are all different.
My ASCT daily diary is over 4 postings, this is posting 1 of 4; days -02 to 05.
A complete list of links to my previous ASCT postings are at the end of the 4th ASCT posting.
Treatment/medication.
Acyclovir --antiviral (herpes, chicken pox etc.)
Allopurinol: -------decreases uric acid concentrations
Ativan --------------decreases anxiety
Cefpirone ----------antibiotic
Clexane ------------low molecular weight heparin to reduce blood clotting activity.
Codeine ------------to control diarrhoea
Cyclizure-----------anti- nausea
Dexamethasone--------- synthetic corticosteroid (steroid)
Gentamian----------bacterial antibiotic
Haloperidol --------anti-nausea
Maxalon ------------anti nausea
Melphalan high dose melphalan --(chemotherapy)
Meropenen ---------antibiotic
Methylprednisolone -----anti-inflammatory steroid
Panadol ---------------paracetamol based pain relief
Vitamin C
Temazepan ----------sedative
Zofran ----------------anti-nausea
Day -02: First day.
Good sleep at home; woke early.
It is a significant day, the beginning of my ASCT hospitalisation.
Admission to hospital, check in and administration tasks chest x-ray.
Headache in evening given panadol, vomit at 10pm, probably stress and dehydration.
Treatment/medication: Panadol, Clexane, Temazepan, Maxalon.
Red bloods 4.21; white bloods 9.04; platelets 300; weight 70.45kg (155 lbs)
Day -01: Chemotherapy infusion.
Broken sleep overnight, minor headache when getting up.
Felt down this morning, new environment, perked up when Myra arrived, my wife and caregiver.
Chemo in at mid-day, high dose melphalan and dexamethasone.
Saline continual through to mid-day tomorrow. Pass urine into containers for measuring total volume.
Visit by physio, spent time on Exercycle plus talk on what exercises to do. We agreed on Exercycle, stretching, exercises, walk outside, walk in corridors, walk in BMTU. All may be limited by white counts or fatigue.
Nausea started after dinner.
Treatment/medication: Panadol, Clexane, Allopurinol, Zofran, Dexamethasone, High dose Melphalan, Frusemide?.
Link: Myeloma Transplant - Caregiver
Link: <>Myeloma Transplant - Exercise
Day 0: Peripheral blood stem cell infusion.
Last night long time to get to sleep (steroids?).
On saline overnight, nausea pills toned down nausea, don’t feel like eating.
After breakfast 10 minutes Exercycle, walked 30 minutes, stretching.
Stem cell infusion at mid-day, all went well.
Minor light headed for a short while. Myra could smell the preservative, like strong corn.
Having Myra present perks me up.
Stayed up until 11pm watching TV.
Treatment/medication: Clexane, Allopurinol, Dexamethasone, Methylprednisolone, Peripheral blood stem cells, [Anti-nausea: Maxalon, Zofran x2].
Weight 71.05kg (157 lbs)
Link: <>Myeloma Transplant - Stem cell infusion.
Day 01:
Slept reasonable, dozed through to 7.30am.
Started dull headache and sore jaw joint, took panadol but no effect.
Remaining active.
Felt good for 3 hours then down after lunch, felt weepy and emotional.
Nausea, tired, eating little except for soft foods.
Treatment/medication: Clexane, Temazepan, Dexamethasone, Allopurinol, Acyclovir, Dexamethasone, Methylprednisolone, [Anti-nausea: Maxalon Zofran x2].
Red bloods 3.67; white bloods 10.80; platelets 229; weight 69.65kg (153.5 lbs)
Day 02: Food tasting bland.
Bad night, had sleeping pill with little effect, not much sleep at all. First 3 hours no sleep then broken sleep. Became apprehensive again.
Feeling better during day, went for a walk with Myra.
Food tasting bland, smell of some food is offensive.
Steroids keep me awake, last dose tomorrow.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Methylprednisolone, [Anti-nausea: Zofran].
Weight 69.60kg (153.4 lbs)
Link: <>Myeloma Transplant - Food
Day 03:
Good solid sleep 10pm to 7.30am assisted by sleeping pills and sedative.
Felt better all day though susceptible to the occasional drop.
Walked through the corridors to the children’s Starship hospital with Myra to maintain exercise.
Mouth and tongue starting to go off, strange taste.
Still feel weepy at times. A few burps and hiccups today.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Methylprednisolone.
Red bloods 3.46; white bloods 7.76; platelets 187; weight 70.40kg (155 lbs)
Day 04: Diarrhoea underway.
Good sleep with pills again. Woke at 4am with mouth/throat/gut problems. Nausea, dry reaching, mucus, salvia, burping. Had Maxalon then tablets.
Breakfast took a while. Food and drink difficult today. Struggled to eat dinner, took over an hour. Nausea after dinner again so took Zofran.
Diarrhoea underway, rumble, rumble. Gargle tonight included a small throw up.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Dexamethasone, [Anti-nausea: Maxalon, Zofran].
Weight 68.70kg (151.5 lbs)
Link: <>Myeloma transplant - Nausea.
Link: <>Myeloma Transplant - Diarrhoea
Day 05: IV fluids commence.
Good sleep with pills again, woke with nausea.
Today a bad day, too much nausea, was off food. The pills reduced the nausea but it never went away, advised to take anti-nausea medication regularly, I agreed with this.
IV fluids commenced. Still doing exercises.
White counts now dropping, starting to go down into the valley.
Developing a rash, a rash sample was taken.
Felt fatigued.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, [Anti-nausea: Maxalon x3, Zofran x2].
Red bloods 3.80; white bloods 2.09; platelets 140; weight 67.15kg (148 lbs)
Monday, August 31, 2009
Myeloma transplant - Food
Food and fluids were a major issue for me during both myeloma stem cell transplants leaving me with weight losses of 8kg and 4 kg respectively.
After about 6 days my white counts were coming down, my appetite decreased, nausea increased, mouth and throat became sore and tender, taste buds changed and it became difficult to swallow. [Nausea link] Eating food and drinking became a hassle.
Myra prepared some food recommended by the hospital dietician, food which was easier to eat compared to the hospital food. All my food was approved by the medical team and dietician.
What I could tolerate was moist soft food in small portions, spaghetti, creamed rice, pasta, macaroni, soup, tinned baby food, mashed veggies, mashed potato, the hospital ice cream and yoghurt, jelly and mixed fruit. Breakfast was rice bubbles or wheetbix with ample milk. When the going got tough there were several days when I ate my rice bubbles two at a time. I was advised to add a little more sugar to sweet foods and salt to savoury foods. This had little effect on my taste buds though others have said it made a difference to theirs.
Water became tasteless so I added lemon juice or mixed it with fruit juice. Fruit juice by itself, ginger ale, ginger beer and ginger tea was a good option and I enjoyed a cup of normal tea or coffee.
There were lemonade ice blocks which were soothing. I should have negotiated with the BMTU to bring in my own flavoured ice block or ice cream on a stick.
The nurses made a divine milkshake, so soft and cool.
The problem with the hospital food was I had to order it the day before and often I got the chefs choice, not what I ordered. A lot of it was dry and hard. It had to be eaten when it came, portions were too big and some times the smell of it put me off. I wanted small moist portions when I needed them not big portions when it arrived.
Unlike some others I never vomited and that was probably because I ate small portions of food that I could tolerate.
Generally I tried to eat a little often, not always achievable especially when I was feeling nauseous. There were times when I just did not want to eat, so I didn’t. I always ate sitting up as I felt this would help my digestive system and I could focus on eating even if it was slow.
Keeping my fluids up was difficult as mentioned previously; water became tasteless, bland, difficult to swallow and nausea effects. To prevent dehydration my fluids were monitored and maintained by being fed intravenously through my central line.
Hygiene is important so I always washed my hands before eating or drinking.
After going home the nausea, lack of taste and lack of appetite continued for about 3 weeks before a gradual change for the better.
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]
After about 6 days my white counts were coming down, my appetite decreased, nausea increased, mouth and throat became sore and tender, taste buds changed and it became difficult to swallow. [Nausea link] Eating food and drinking became a hassle.
Myra prepared some food recommended by the hospital dietician, food which was easier to eat compared to the hospital food. All my food was approved by the medical team and dietician.
What I could tolerate was moist soft food in small portions, spaghetti, creamed rice, pasta, macaroni, soup, tinned baby food, mashed veggies, mashed potato, the hospital ice cream and yoghurt, jelly and mixed fruit. Breakfast was rice bubbles or wheetbix with ample milk. When the going got tough there were several days when I ate my rice bubbles two at a time. I was advised to add a little more sugar to sweet foods and salt to savoury foods. This had little effect on my taste buds though others have said it made a difference to theirs.
Water became tasteless so I added lemon juice or mixed it with fruit juice. Fruit juice by itself, ginger ale, ginger beer and ginger tea was a good option and I enjoyed a cup of normal tea or coffee.
There were lemonade ice blocks which were soothing. I should have negotiated with the BMTU to bring in my own flavoured ice block or ice cream on a stick.
The nurses made a divine milkshake, so soft and cool.
The problem with the hospital food was I had to order it the day before and often I got the chefs choice, not what I ordered. A lot of it was dry and hard. It had to be eaten when it came, portions were too big and some times the smell of it put me off. I wanted small moist portions when I needed them not big portions when it arrived.
Unlike some others I never vomited and that was probably because I ate small portions of food that I could tolerate.
Generally I tried to eat a little often, not always achievable especially when I was feeling nauseous. There were times when I just did not want to eat, so I didn’t. I always ate sitting up as I felt this would help my digestive system and I could focus on eating even if it was slow.
Keeping my fluids up was difficult as mentioned previously; water became tasteless, bland, difficult to swallow and nausea effects. To prevent dehydration my fluids were monitored and maintained by being fed intravenously through my central line.
Hygiene is important so I always washed my hands before eating or drinking.
After going home the nausea, lack of taste and lack of appetite continued for about 3 weeks before a gradual change for the better.
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]
Thursday, August 27, 2009
Myeloma transplant - Nausea
During both autologous stem cell transplants for myeloma I have suffered from nausea. Who didn’t?
Nausea is a common side effect of high dose treatment and can be effectively controlled by anti-sickness drugs. It is my policy not to put up with side effects that can be controlled so I use them. There are different types available; you need to tell the nurses you need them and to help find the right one for you.
When I suffered nausea I wouldn’t eat so it was in my interest to take the anti-sickness drugs. For me, the drugs did tone nausea down but did not always eliminate it completely.
Effective for me have been Metamide, Zofran, Maxalon and Cyclizine.
Nausea first came to me during transplant about 6 hours after melphalan and stayed constant for 2 weeks controlled by anti-sickness drugs. After that it reduced slowly and did not disappear until 8 weeks after melphalan. That is when I no longer needed the drugs regularly though there were occasional outbreaks over the next 4 weeks controlled by drugs when needed.
When the nausea disappeared after 8 weeks I started to eat more and gain weight.
To help myself I:
Told the nurses when I was suffering nausea.
Took anti-sickness drugs at onset of nausea.
Kept the nurses informed if the anti-sickness drugs were ineffective.
Ate slowly and in small quantities.
Ate sitting up for good digestion.
Stayed sitting up for at least 30 minutes after meals.
Wore loose fitting clothes especially around the tummy.
I did find that ginger products can assist nausea. That was ginger beer, ginger ale, ginger crystals and ginger biscuits.
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]
Nausea is a common side effect of high dose treatment and can be effectively controlled by anti-sickness drugs. It is my policy not to put up with side effects that can be controlled so I use them. There are different types available; you need to tell the nurses you need them and to help find the right one for you.
When I suffered nausea I wouldn’t eat so it was in my interest to take the anti-sickness drugs. For me, the drugs did tone nausea down but did not always eliminate it completely.
Effective for me have been Metamide, Zofran, Maxalon and Cyclizine.
Nausea first came to me during transplant about 6 hours after melphalan and stayed constant for 2 weeks controlled by anti-sickness drugs. After that it reduced slowly and did not disappear until 8 weeks after melphalan. That is when I no longer needed the drugs regularly though there were occasional outbreaks over the next 4 weeks controlled by drugs when needed.
When the nausea disappeared after 8 weeks I started to eat more and gain weight.
To help myself I:
Told the nurses when I was suffering nausea.
Took anti-sickness drugs at onset of nausea.
Kept the nurses informed if the anti-sickness drugs were ineffective.
Ate slowly and in small quantities.
Ate sitting up for good digestion.
Stayed sitting up for at least 30 minutes after meals.
Wore loose fitting clothes especially around the tummy.
I did find that ginger products can assist nausea. That was ginger beer, ginger ale, ginger crystals and ginger biscuits.
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]
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