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 - 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)

Peripheral neuropathy reduction

I have been suffering from peripheral neuropathy caused by thalidomide maintenance for multiple myeloma. After stopping thalidomide the peripheral neuropathy reduced but was still present. The soles of my feet were numb (about 6/10), my feet were often cold and when cold painful, I wore my socks 24/7, I could not walk in bare feet.
To relieve the peripheral neuropathy symptoms I use a multi-vitamin B (including B1, B6, B12 and folic acid) and alpha-lipoic-acid (300mg one/day).
Recently I changed the brand and dosage of the alpha-lipoic-acid to 600mg per day, 300mg at breakfast and 300mg at dinner.
After 6 weeks I began to feel a gradual change in my feet. Now the numbness has reduced (about 2/10), my feet are rarely cold, can walk in bare feet and don’t have to wear my socks in bed.
I attribute this change to the increase in alpha-lipoic-acid.
I was prepared to increase the alpha-lipoic-acid to 1200mg/day but will stay at 600mg/day. If future treatment causes the peripheral neuropathy to return I will increase the alpha-lipoic-acid then and consider including L-carnitine and L-glutamine.

Links:
Myeloma legend Minnesota Don has made an excellent posting on his blog (myelomahope) summarising peripheral neuropathy treatment. The comment at the bottom by Habubrat on the use of alpha-lipoic-acid during chemotherapy is worth reading as well. Don has 7 other postings on peripheral neuropathy treatment found in his labels column.
David Emerson (Beating myeloma) has a good summary of alpha-lipoic-acid. It is worth searching for other peripheral neuropathy articles on his site as well.

Sunshine Coast

We have returned back to New Zealand from our two weeks at Caloundra on the Sunshine Coast Australia, a three hour flight across The Tasman.
Nice weather 28C, 84F, blue skies. Flying in from 16C, 61F, that was a blessing.
Only health problem was a cough which I believe was bought on by the rental car air conditioning.
A highlight was a visit to Australia Zoo the home of the crocodile man Steve Irwin. Very professional, very clean, well sign posted, lots of shade including shade cloth over rest areas. A shuttle service was available for those who struggle with walking or the tired people. The Crocoseum was awesome, crocodiles, elephants, snakes and birds.
Having ornithology as a hobby I spent a lot of time in the rain forest aviary, a walk through enclosure. Wow, to get so close up to all those Australian birds was a memorable experience.
If you are in Australia we recommend the Sunshine Coast and Australia Zoo.
Now back in New Zealand, back to work, back to blogging and only six weeks to Christmas!!
On Tuesday I visit the hospital for a consultation, more on that next week.