Sid's multiple myeloma journey: 2009

Saturday, December 26, 2009

Health update December 2009

Previous health update link September 2009

My fourth and final cycle of cyclophosphamide and dexamethasone was completed on 21st October.
IgG had reduced to 8.8g/l (880mg/dl) the lowest since diagnose June 2001. At commencement of the first cycle IgG was 22.2g/l (2220mg/l).
My two soft tissue plasmacytoma on my skull had disappeared after the second chemo cycle.
Unfortunately they began to reappear in mid November (IgG has stayed down) and by mid December had grown sufficiently for me to insist on action. I am now awaiting an oncology appointment then radiation. Again there is no pain or discomfort, just two lumps growing larger in size.
December 21st I started to get minor symptoms of shingles, tingling down the right side and back. No rash or blistering. My doctor said he could neither confirm nor deny it was shingles as there was no visible evidence. He gave me a prescription for Aciclovir and a soothing lotion just in case.
All else is normal.

Monday, December 21, 2009

Seasons greetings

I give a very merry Christmas and a healthy 2010 to all my myeloma friends, caregivers and supporters.
Residing in New Zealand in the southern hemisphere means we do not experience a cold or snow bound Christmas day. It’s summer, long range forecast for Christmas day in my home town is 22C (72F ) with clear blue skies.
My New Year wish is for a cure for myeloma.

Friday, December 18, 2009

Autologous stem cell transplant for myeloma

This concludes Sid’s multiple myeloma journey Part 2 “ASCT 1”, the second part of my multiple myeloma journey.
It covers my myeloma journey from the end of initial VAD treatment, transplant planning, stem cell harvesting and the autologous stem cell transplant (ASCT) for myeloma and the recovery into my first plateau stage.
There have been 22 transplant postings.
A link to a summary of the part 1 postings (the beginning) can be found here.
Click on the red title links to go to the posting highlighted.
All links come up in a new page.
If you would like to contact me via email my email address is in with my profile.
Feel free to add a comment to any posting.

Myeloma transplant – Preparation
Decision reasons to proceed with an ASCT.

Myeloma transplant – Pre transplant planning
Once the ASCT decision was made my planning began.

Myeloma transplant – Stem cell collection
My stem cell collection, the process, my reaction including severe pain and blurred vision resulting in a central vein occlusion.

Central vein occlusion
Tests for and results of my central vein occlusion.

Myeloma transplant – Planning
My planning of how to live in the BMTU, it was to be my home for 3 weeks. Delegation, support and help.

Myeloma transplant – Caregiver
Myra my wife and caregiver. Could not do without her. What she did.

Myeloma transplant – Visualisation
My visualisation scenario used as a survival tool during ASCT.

Myeloma transplant – Stem cell infusion
The day of my stem cell infusion, an important day but an anti-climax.

Myeloma transplant – Diarrhoea
Transplant diarrhoea is a bit like sex, you have to experience it to believe it.
Hints and help to get through it.

Myeloma transplant – Dry skin
Dry skin and lips from air conditioning and chemotherapy, what I did to overcome it.

Myeloma transplant – Emotions
My emotions caught me by surprise. Up and down, tears and anxiety. A truthful account of my experience.

Myeloma transplant – Hair loss
Hair loss did not worry me, the heat loss from my bald head did.

Myeloma transplant – Nausea
Nausea was a problem for me starting 6 hours after high dose melphalan and continuing for 6 weeks.

Myeloma transplant – Food
During ASCT eating is a challenge, I found hospital food unpalatable. Myra prepared most of mine. I lost 7.2 kg (15 lb)

Myeloma transplant – Mucositis
Paying attention to a mouth wash routine helped me, but mucositis was still there.

Myeloma transplant – Exercise
I had good intentions, kept exercise up but when fever and fatigue came I backed off.

Myeloma transplant – Mind games
Keeping on top of mind games was a challenge.

Myeloma transplant – Days -02 to 05
A summary of days -02 to 05 from my diary including my feelings, daily treatment/medication, bloods and weight.

Myeloma transplant – Days 06 to 11
A summary of days 06 to 11 from my diary including my feelings, daily treatment/medication, bloods and weight.

Myeloma transplant – Days 12 to 15
A summary of days 12 to 15 from my diary including my feelings, daily treatment/medication, bloods and weight.

Myeloma transplant – Days 16 to 22
A summary of days 16 to 22 from my diary including my feelings, daily treatment/medication, bloods and weight.

Myeloma transplant – Recovery
How I coped during the recovery period.

Tuesday, December 15, 2009

Myeloma transplant - Mind games

During the time of my illness and especially during my autologous stem cell transplant for myeloma I was intrigued by how much mind games came into play.
It was a battle at times to stay focussed on where I was, what was happening and not to let the mind wander into negativity when the setbacks came.
Being an optimist, preparing positive thoughts and sayings I thought my headspace would not be a problem.
The battle was in the evenings or when alone. Concentration was down so the mind wandered. What is that pain, am I progressing, what if this does not work, shouldn’t my white counts be rising now?
Big deal then, trivial now.

Saturday, December 12, 2009

Myeloma transplant - Recovery

Leaving the BMTU after my autologous stem cell transplant for myeloma was a test; the hospital was a secure base. There I had been dependent on others, now I was returning to independence. It was like cutting the umbilical chord from Mother ship.
My plan on leaving the BMTU was to split my time through to 100 day post transplant into 3x3 week groups. This gave me a 3 week at a time focus not looking too far ahead and reassessing at the end of each. For the first 3 weeks I took life one day at a time, only looking back at the end of each week to assess progress.
Myra was at home to help my transition which made it less stressful for me.
Travel to outpatient appointments had to be arranged until I could drive again. Driving recommenced after 10 days at home giving me more freedom.
Nausea was present and treated with Cyclizine for four weeks after coming home from transplant. I began to regain my appetite after two weeks, gaining weight and starting to feel better.
Hair re-growth was noticed four weeks after coming home.
Exercise was slow and steady, limited at first by fatigue. Initially walking was to the third power pole from home and return, increasing one pole at a time. My goal was to walk every day with an increase in distance every second day. Three weeks after coming home I was walking 30 minutes non-stop daily.
We live in a two story house so I used the stairs for additional exercise. Initially one step at a time, then two steps and a rest, then advancing to resting only at the landing. We celebrated when I was able to walk the stairs non-stop.
Fatigue was present for the first two weeks then slowly decreased.
After coming home I noticed I was suffering minor memory loss during conversation, mainly recalling some names and words. This was considered a classic case of “chemo brain” taking about 12 months to revert back.
I was still suffering from back pain especially my compressed vertebrae T8. A 15 to 30 minute rest on the bed usually eased the discomfort. This got progressively better over six months.
During recovery we made Friday our fun day, a day to have some fun, go out for a coffee, a drive or visit someone.
At the post transplant 100 day consultation it was considered I had made a good recovery and was in the plateau stage. Mission accomplished, time to have fun, time to let loose: and so we did.

Links:
Myeloma Transplant Days -02 to 05
Myeloma Transplant Days 06 to 11
Myeloma Transplant Days 12 to 15
Myeloma Transplant Days 16 to 22

Glossary:
BMTU: Bone marrow transplant unit.

Wednesday, December 9, 2009

Sid's story in LBF magazine

About this time last year I was interviewed by a journalist doing research for an article to be placed in the Leukaemia and Blood Foundation of New Zealand (LBF) magazine winter edition. LBF wanted a multiple myeloma patient who had myeloma long term and was willing to tell their story.
Encouraging others during their myeloma journey and sharing my experience has always been one of my aspirations. That was the motivation for me to agree to the interview.
I found it a step back 8 years into my myeloma past reviving many memories of my myeloma journey. Myra was present during the interview prompting me when my memory failed and sharing in the story.
Going through that whole process was another reason that motivated me to commence my blog.

A link to the magazine article (edited and 1.3mb) is here. LBF magazine.

A link to the full version (recommended) is here. Sid's story.

Sunday, December 6, 2009

Myeloma transplant - Days 16 to 22

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).

Thursday, December 3, 2009

Myeloma transplant - Days 12 to 15

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)

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)

Tuesday, November 17, 2009

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.

Sunday, November 15, 2009

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.

Tuesday, October 20, 2009

Some good news

Some good news today and a disappointment.
My Haematologist was unavailable, had the registrar instead. Valcade application has been declined by Pharmac again, more about that when I return from my holiday.
Now the good news.
August 2008 I had my second autologous stem cell transplant, early 2009 my IgG level started to rise.
After 4 months of cyclophosphamide and dexamethasone my IgG level has lowered from 24 down to 8.8 (880 USA). The normal range is 7 to 16 (700 to 1600 USA). This is the lowest it has been since first diagnose, then it was 80!!!
My bone pain and restricted movement have disappeared. I can drive to a car parking building, reach out to get my ticket pain free. When reversing my car I can twist my body and see where I am going. Road and shopping mall speed humps are now travelled at a faster speed, to hell with the suspension let’s have catch up time.
I can now run after and chase my grandchildren.
All my myeloma friends will understand what I am saying. With myeloma, when the good times are there, take them.
I feeeeel goooood.

Sunday, October 11, 2009

Been too busy!

My last posting was back on September 19th. All is well, just been too busy, some of which is explained in this posting.
Chemotherapy and dexamethasone has reduced my IgG down to 10. It was decided one more cycle then reassess. What happens next? I will listen to my consultant on 20th October then present my list of my options and questions, an important day for me. There is still no decision on Valcade being funded by our health system.
Myra and I attended a Lymphoma awareness day here in Auckland put on by the Leukaemia and Blood Foundation (LBF). Survivorship was the theme, something close to my heart.
That got me motivated to ask our myeloma group co-ordinator if I could prepare and present a PowerPoint presentation for our myeloma support group on my survival from diagnose in 2001 through to the end of my initial VAD treatment. She was happy for me to do that so I chose 6 survival skills that I used which I will elaborate on in other postings. A previous posting Decision made to be a myeloma survivor was my starting point.
There were a surprising number of questions from the group on my bone pain which will be another presentation next year. Two previous postings Myeloma bone pain and Morphine for myeloma bone pain are popular search engine hits on my blog. Some one with myeloma bone knowledge like orthopaedics will talk first followed by my experience.
Work hours have increased since a mid-year downturn. I am a structural draughtsperson on a casual employment contract that suits me for health reasons. No more long hours or weekends. Work keeps me normal, my brain active and brings the dollars in. That along with more time on my religious studies has cut into blog time.
My “transplant series” has about 6 more postings to complete. That will be followed by the first plateau/remission stage, more about fun and life there.
At the end of the month we are having 2 weeks holiday (USA = vacation) so no postings then.
It’s spring here in New Zealand, warmer weather so time for vegetable garden preparation and growing. In particular money maker and sweet 100 tomatoes, spring onion, lettuce, radish, silver beet and leeks.
Have fun, be happy.

Saturday, September 19, 2009

You searched for that!

On my blog there is a site meter that shows the number of visits I receive. I can access my site meter and read where any referrals come from. Referrals from Google or other search engines make interesting reading.
Here is a short list of recent search results that were directed to my blog “Sid’s multiple myeloma journey”. (My reference posting is in brackets)

Diagnose
Multiple myeloma stage 0
How do you diagnose myeloma? (Pre diagnose)
Myeloma and hypercoagulable state.
Vision and myeloma. (Central vein occlusion)
Myeloma plasmacytoma. (History)

Pain
Bone pain myeloma; (Myeloma bone pain)
Myeloma pain relief; (Myeloma bone pain)
Could pelvis pain be multiple myeloma? (Myeloma bone pain)
Bone pain in humerus. (Myeloma bone pain)
How intense is myeloma bone pain. (Myeloma bone pain)

Treatment
Multiple myeloma VAD treatment. (My VAD treatment for myeloma)
Myeloma stage 3 treatment plan.
Tempazepan medication. (VAD treatment for myeloma)
Myeloma stage I, survivor’s natural treatment;
Sore bum while on chemotherapy. (Transplant dry skin)
Cold sores and myeloma. (Transplant dry skin)

Transplant
Stem cell transplant multiple myeloma. (Transplant stem cell collection)
Harvest stem cells in myeloma. (Transplant stem cell collection)
Myeloma stem cell mobilisation. (Transplant stem cell collection)
Baldness after myeloma transplant; (Transplant hair loss)
Relapsed multiple myeloma transplant will it help and work
Autologous stem cell transplant diarrhoea. (Transplant diarrhoea)
Multiple myeloma dry skin on legs; (Transplant dry skin)

Final stage
Final stage of myeloma. (Confronting death)
End stage multiple myeloma. (Confronting death)
Death from myeloma. (Confronting death)

General
Myeloma aggression or swearing or moods. (Dexamethasone)
Myeloma blog; (Sid’s multiple myeloma journey)
Positive affirmation forums: (Myeloma bone pain)
Affirmation survivor. (Myeloma bone pain)
Eating with myeloma. (Transplant food)
Foods for myeloma. (Transplant food)
Lemon juice for myeloma. (Transplant food)

Thursday, September 10, 2009

Health update September 2009

Previous update summary July 2009:
After having my second stem cell transplant in August 2008 all was going well, the 100 day tests were positive, IgG was down to normal, I was feeling good.
Then my 3 monthly tests in May 2009 showed my IgG had increased from 10 to 18, measured g/l in NZ (7 to 16 is the normal range). A month later it had risen to 22, the trend was heading up. Except for the proteins all other tests were OK.

This update September 10 2009.

IgG results: g/l (USA mg/dl)
24 Feb 2009 = 10.1 (1010)
18 May 2009 = 18.4 (1840)
16 June 2009 = 22.2 (2220)
21 July 2009 = 21.8 (2180)
18 Aug 2009 = 12.7 (1270)
Treatment:
It was decided to try to reduce the IgG early with chemotherapy before it got too high.
Valcade and Revlimide are not funded by Pharmac in New Zealand; we will try them on a trial or at a later date. A link to Valcade, Revlimide and Pharmac NZ summary is here.
Chemotherapy; cyclophosphamide (Chemo) and dexamethasone (steroid):
First 28 day cycle commenced Wednesday 1st July 2009.
Second 28 day cycle commenced Wednesday 29th July 2009.
Third 28 day cycle commenced Wednesday 26th August 2009.
Cyclophosphamide: 500mg day 1, 8, 15, 22.
Dexamethasone: 20mg day 1, 2, 3, 4 and 15, 16 17, 18.
Allopurinol: 300mg, 1 tablet per day.
Bactrim: 480mg, 2 tablets Mon/Wed/Fri.
As you can see by the 18th Aug result there has been a dramatic drop in IgG.
When taking the dexamethasone I have sleep problems for about 6 days but no other side effects. I get fatigue the day after I take the cyclophosphamide, no nausea and no other side effects. Bowels have been normal. I still have Aredia monthly.
Soft tissue plasmacytoma:
Two soft tissue Plasmacytoma developed on my skull as the IgG increased, a fine needle biopsy confirmed what they were. They were a pronounced lump, no pain or discomfort, getting larger as the IgG increased. Seven days after the chemo commenced they had reduced by 50%, at the end of the first cycle they had reduced by 80%. By the end of the second cycle they had disappeared altogether.
I have had 2 plasmacytoma in bones before when in relapse; June 2007 left humerus, October 2008 right humerus. Both required surgery for titanium rod prosthesis..
Bones:
My inflamed sternum from continual coughing in June slowly reduced, disappearing mid July. That was painful, like a knife in my chest. X-rays showed no fractures.
At the end of July I had an uncontrollable sneezing bout which fractured a rib, right side, at the back mid height. Pain relief went from Panadol to Codeine to Paradex. I had to sleep on my back for 2 weeks and movement was restricted. It took 3 weeks to start to feel comfortable again and reduce the pain relief.
The rib fracture was a reminder that there is still residual bone damage from my initial state at diagnose in 2001 and relapse in 2007/2008 and I need to be careful. The bone damage can be seen on x-rays.
Peripheral neuropathy:
Peripheral neuropathy from 14 months on Thalidomide in 2007/2008 has stayed in my feet though has reduced. Only mild, doesn’t restrict me other than having to wear socks 24/7 as my feet can get cold. To help myself I massage my feet and take vitamin B+ and Alpha-lipoic-acid.
Chemo brain:
Chemo brain from my stem cell transplant in Aug 2008 has subsided, memory is better but I still have a problem remembering names. I still write lists of things to do, work procedures and technical terms. People’s names with a word prompt are kept in a notebook. E.g. Mary Smith, lady with a limp.
General health:
General health is fine. I am working 5 days a week 9.00 to 4.30. Drinking 2 L of liquid per day, mostly water. Myra and I follow the principles of a low GI diet; beans, pulses, protein, lots of fruit and vegetables. Walk for an hour both days in the weekends and 30 minutes at least twice during the week. Currently no bone pain or pain relief or restricted movement.
Vitamins:
The vitamins I take are:
A man’s multivitamin: Mon/Wed/Fri.
Vitamin C: 250mg/day.
Cartia: 1/day to thin my blood.
Vitamin B+ complex: For peripheral neuropathy, 1 per day.
Alpha-lipoic-acid: For peripheral neuropathy, 300mg morning and evening.

Glossary:
Cyclophosphamide: Cyclophosphamide is a chemotherapy drug that is given as a treatment for many types of cancer.
Dexamethasone: Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. My seek and destroy missile.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications. High levels of uric acid may cause gout attacks, kidney stones or renal failure.
Bactrim: Used as an antibiotic during chemotherapy.Aredia: In myeloma Aredia (a bisphosphonate) can delay and reduce the number of skeletal events and reduce bone pain.

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]

Monday, September 7, 2009

Myeloma transplant - Exercise

How to approach exercise during my stem cell transplant for myeloma had me baffled. What exercises to do, when, how long, why, could I do it, will it have any good or bad effects.
My medical advisers said that being isolated and immobile during transplant would cause muscle wasting and may cause decreased circulation, DVT, pneumonia or respiratory complications.
My attitude was if I was to achieve a successful outcome I want to stack all the odds in my favour so if maintaining exercise during transplant was going to help my success then I would do it.

Pre transplant I had recovered from initial treatment, gaining strength and walking an hour a day.
Until my white counts dropped too low I continued walking at the hospital for 30 minutes at a time when I could, initially outside then the hospital corridors. My pace slowly reduced as my white counts lowered and fatigue started.
When my neutrophils were low and I was unable to go outside the ward I used an Exercycle in the ward and walked around the room.
The hospital physiotherapist gave me a range of exercises to do during transplant. Stretching, chest expansion, deep breathing, ankle strengthening, arm lifting and rotation, leg lifting all on the bed or standing up and generally tried to keep moving to maintain circulation and limit muscle wasting.
There were times when I could not exercise due to fatigue or tiredness.
Did it help? A little, if I did nothing my condition would have deteriorated. When leaving the BMTU I was fatigued, could walk slowly non stop for 15 minutes and had to rest.
I believe exercise kept me healthier during transplant and helped me recover more quickly.
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, September 3, 2009

Myeloma transplant - Mucositis

From other myeloma transplant patients who had a myeloma stem cell transplant a common comment was about mucositis, mouth and throat issues.
From transplant day one I maintained a rigid commitment to following the recommended teeth and mouth wash process even when I didn’t feel like it. My attitude was not negotiable; it was in my interest to maintain a healthy mouth during transplant. The mouth wash was supplied by the hospital.
During the first transplant I had no mouth or throat issues. Unfortunately during the second transplant for two days I had difficulty with mucositis, saliva became thicker and being unable to swallow. To overcome this, my medication was given intravenously and pain relief increased. Once my white counts started to rise the mucositis disappeared.
Day 3 was when I first started to feel a change in my mouth. When my white counts started to rise as my stem cells engrafted it was on day 13 that my mouth began to return to normal.
Food and fluid intake became a hassle while mucositis was present.
[Food link] and [Nausea]
Preparation before transplant is important. My dentist was briefed about my transplant, a dental check was completed with no action required. Healthy gums and teeth help in the prevention of any mouth hygiene issues during transplant. My dentist gave good advice on hygiene, teeth and gum cleaning which was similar to the transplant team advice.
Mucositis and painful mouth and throat issues can be controlled by pain relief administered by the transplant team. It is short term, once the white cells start increasing the problem subsides.

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]

Glossary:
Mucositis: Inflammation of the mouth and throat lining which often occurs after high dose chemotherapy.

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]

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]

Sunday, August 23, 2009

Myeloma transplant - Hair loss

Hair loss during myeloma stem cell transplant is inevitable as it is a side effect of the conditioning therapy.
Anticipating this and to keep hygienic, the day before entering the BMTU I had my head hair trimmed back to a number 2 and gave my beard a close trim.
Hair loss became noticeable about day 10 especially after showering. Eventually I lost 90% of my hair with only some minor body hair remaining. Be prepared for loss of hair from head, facial, eyebrows, nasal hair and public areas.
What surprised me was the loss of anal hair. I did not realise its presence until I wiped my anus and felt a different sensation.
Another surprise was the amount of heat loss from a shaven or bald head. To overcome this I always wore a cap or beanie. At night when it was cold I kept my beanie on. Myra knitted me a beanie in my Waikato rugby team colours. She knits loose letting a bit more air in so I wore that one when it became too hot for the others.
Having no hair and dry skin I maintained my moisturising all over including the scalp.
After transplant I always covered up or used sun block when outside. I have a fair complexion and can sun burn easily.
Hair re growth was first noticed 7 weeks after transplant day 1. My head hair grew back soft, golden and wavy. Pre transplant it was straight and grey/blonde. My beard grew back patchy so I shaved. It took a further 6 weeks before it grew back with normal coverage.
I was reluctant to look at myself in the mirror with a bald head; it wasn’t the me I was used to.
Two of my female myeloma friends were blessed with a stunning “chemo perm” after their ASCT, tight and curly. Both said it was a darker colour.
One amusing thing happened. Myra was helping me shower in the BMTU; I was having a difficult day feeling fatigued.
She said, “Look down there.”
“Where?” I replied
She said “Down there, the family jewels.”
So I looked, not a pretty sight at the best of times. It was disgusting, Looked like a plucked chicken, size 1. I made a mental note not to look again for a very long time.
There was an interesting reaction from our 2 grand children aged 8 and 5 after returning home from my second transplant in 2008. I had my cap on and asked if they would like to see my bald head. They said “Yes”. After taking my cap off there was a gasp and a step backwards, they did not like to see Grandad with no hair so the cap went back on.

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]

Glossary:
ASCT: Autologous stem cell transplant.
BMTU: Bone marrow transplant unit.

Thursday, August 20, 2009

Myeloma transplant - Emotions

My emotions during my stem cell transplant for myeloma caught me by surprise. Others had told me to expect emotions, tears, feeling up and down, mainly because of medication, treatment and what I was going through. What I didn’t expect was how strong and unpredictable those emotions were. Perhaps it was a male thing, testosterone breakdown?
I chose to let the emotions flow, it was not necessary to be strong.
There were changes to myself and my normal routines during transplant that may have prompted emotions.

Loss of independence, having to rely on others.
Leaving my modesty at the door.
Isolation, being “locked away” for 3 weeks.
Getting used to hospital routine.
Physical changes to my body.
Treatment and steroids/chemotherapy side effects.
My focus on what I was there for.
Having to constantly practice good hygiene to stay clean.

Some mornings when Myra came in I was so overwhelmed to see her I burst into tears.
During my first transplant George Harrison of the Beatles fame died. Watching it on TV news that night I felt huge grief resulting in a spontaneous outburst of tears.
What I missed was the intimacy emotions, holding hands, and a cuddle. For hygiene reasons I had to stay “clean”. So we washed our hands to hold hands and had a quick embrace at greeting and leaving.
Myra was great, she reads me well and guided me through my emotion and was aware of her emotional needs as well.
By choosing to limit visitors my evenings became lonely, that was a mistake. The evening was a time that I did need company, the mind wandered as I became bored.
Idle time, head space time, not good.
Be prepared for mind games, it’s a way of coping. The challenge is to stay on top, don’t let the evils or negative thoughts take over. Plan to be positive, have some sayings written down to repeat in you mind.
Be prepared to change plans to cope better. Have support organized pre-transplant to help with that.
If you have faith, call on your faith, have some favourite scriptures on hand.
“The Lord nurses them when they are sick and restores them to health.” Psalm 41:1

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]

Monday, August 17, 2009

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]

Friday, August 14, 2009

Myeloma transplant - Diarrhoea

Anyone I spoke to who has had a myeloma stem cell transplant had a story and warning about diarrhoea and they were right. Transplant diarrhoea is a bit like sex, you have to experience it to believe it.
High dose treatment including melphalan can cause damage to the lining of your bowel wall. Symptoms include cramping, bloating, wind and diarrhoea.
My diarrhoea started on day 4 and it wasn’t until day 18 that I noticed I was getting back to normal. There were still loose motions, the bowels were not so rumbling and there was more time between motions. In between transplant days 4 and 18 I experienced a rumbling tummy, lots of wind and continual diarrhoea. There was no control over the diarrhoea, once it started it was anytime anywhere, even a cough or a laugh was enough for a movement.
Pay particular attention to hygiene down there where the sun does not shine, the bum can become sore. I found baby wipes were less abrasive than conventional toilet paper. Your hospital may have an approved wipe, ask, it’s your bum not there’s.
My transplant unit had bidets which gave another option for good hygiene.
When my bum did get tender I asked the nurses to have a look for rash or broken skin and to apply a barrier cream.
During my second transplant I had an arm in a sling and that combined with myeloma pain made it difficult to get out of bed in a hurry so I was given incontinence pads, a marvellous invention. Again I paid particular attention to hygiene and changed the pads regularly. The nurses helped all that. At first I found that difficult, a loss of independence. One of the nurses gave me a good nurse to patient talk about what their role was, accept that there were things I could not do and to let others do it for me, that was their job. Another lesson on life learnt that day.

Final comment, transplant diarrhoea: It will happen, pay particular attention to hygiene, think positive, and think of it as the cancer leaving your body.

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.]

Tuesday, August 11, 2009

Myeloma transplant - Stem cell infusion

The stem cell infusion for my myeloma stem cell transplant was an anti climax, apparently a common reaction.
The day before stem cell infusion I was given the conditioning therapy of high dose melphalan and dexamethasone.
At mid-day on stem cell infusion day I welcomed my stem cells as they were bought into my room, all details and administration checked and closed off. The bag of stem cells were connected up to my central line letting the process begin.
It was up to me to acknowledge the significance of the occasion, a second chance.
This I did by welcoming my stem cells back into my body telling them they were my heroes as they came in through the central line.
Other transplant patients have told me they recited poetry that had meaning to them or read some relevant scriptures. My NZ Army veteran friend said he played military music relating to an army marching into battle.
Other than a bit of light headiness there was no fuss, no drama.
My temperature, pulse and blood pressure were monitored, nothing outside normal.
We were told the preservatives in the stem cells would leave a smell in the room for several days. I smelt nothing. Myra could smell a corn like odour for 2 days.

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]

Saturday, August 8, 2009

Myeloma transplant - Visualisation

When talking to another myeloma transplant patient he mentioned that he had used a visualisation scenario during his myeloma transplant. Being a NZ Army veteran he used a battle theme complete with appropriate military music.
Having used visualisation before I decided yes, I can visualisation during my transplant.
I enjoy the outdoors, walking, the bush (USA trails); this was to be my theme.
My vision was standing on the edge of a cliff looking down at a pathway that descended into a valley. At the bottom of the valley there was a swamp with hidden obstacles. Across the swamp was another pathway, the way out, this pathway ascended to the other side. Beyond that in the distance was a huge golden archway, where the grass was green, birds were chirping and bone pain was forbidden. That golden archway was my goal.
What does all this mean?

Standing on the edge of a cliff.
This was the beginning of my transplant. The planning was complete; let the myeloma transplant journey begin.
Walking down into the valley.
As my white counts dropped I would descend down to the bottom of the valley. The pathway was meandering and undulating being the variables of treatment.
In the swamp with hidden obstacles.
That was the low point, white counts at their lowest and mucositis was active. I was vulnerable, wading through the swamp the hidden obstacles being the unknown.
The pathway up.
White counts were rising, I could start the ascent. Similar to the descent, the pathway was meandering and undulating being the variables of treatment.
At the top on the other side.
Discharge day, I was at the end of my transplant. Back home recovering, setting my sights on the golden archway.
The golden archway.
The golden archway represented my post transplant 100 day test results. I visualised successful test results allowing me to walk through the golden archway into the plateau stage. Back to good health, the start of the golden years.

All this was written down to be read and visualised during transplant. Myra was up to speed and shared the visualisation helping me through the difficult stages.
Did it help me?
Well, I believe it did. It gave me another coping tool, another focus for my mind, a journey through transplant. My goal was the golden archway, the end result, success.

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]

Wednesday, August 5, 2009

Myeloma transplant - Caregiver

During transplant I needed a minder, an organizer, a caregiver, someone to look after all non medical matters that arose or needed attention during treatment. Of course there was only one person capable of all that, my wife Myra, that’s her occupation. What a peace of mind it was when she said, “Yes, I’ll do that”, and I remain eternally grateful to her.
Her role was invaluable. Though it was my transplant it wasn’t to be all Sid, this was a team effort. We talked it over beforehand, her fears, pressures, the downside, where she would need support and help. How could she take time out and recharge her batteries. Myra had to rearrange her life for 4 weeks, organize time off work. We organized a back up plan if she was sick and had other family members available to help when required.
Myra had to do what I could not do. In the BMTU I lost my independence, needed help and as it turned out was completely wasted for several days incapable of doing anything.
What were my needs, how did I want Myra to help?
Food: Covered in detail in a later posting. That was a big task. We were forewarned that hospital food was inadequate. During transplant Myra prepared and organized palatable food and liquids all approved by the hospital. Where it was stored and how I could access the food when she was not there.
Laundry: Myra did my laundry keeping 3 days ahead. I wanted to use my own pyjamas and underwear as much as possible (a feel good factor) though resorted to hospital issue during bad diarrhea times.
Exercise: I had an exercise programme by the hospital physiotherapist to follow, the aim being not to loose too much condition. Myra encouraged me when the fatigue set in. She kicked my butt for my own good.
Emotions: I needed emotional support, encouragement and monitoring. Making sure I expressed my emotions and did not ignore them. She kept me talking.
Observation: One of Myra’s strengths, observe my attitude, emotions, reactions, moods, health. Keep in touch with the nurses about her observations. She was first to pick up on several treatment reactions.
Diary: I keep a daily medical diary. On the days I couldn’t she would keep the diary up to date.
Communication: Keeping others up to date on my progress. This she delegated out. Several key people were kept up to date and they passed on information to others by phone, text and email.
Networking: Ward matters, talking to the nurses, other patients and caregivers, sharing knowledge and what’s happening in the ward. Creating a friendly environment. As Myra said, “It’s not all treatment, we still have to live.”
Home: Attend to mail, email, keep the home running, and pay the bills.
Clothing: Bring in additional clothing when needed.
Coordination: Coordinating my release, transport home, first week at home and transport to daystay until I could drive myself. (Myra does not drive).
Having Myra as a caregiver during my transplant was a success.

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]

Sunday, August 2, 2009

Myeloma transplant - Planning

My myeloma stem cell transplants have been very demanding, physically and emotionally.
As explained in my pre-transplant planning posting I spoke to other transplant patients, read about transplants extensively and obtained the transplant protocol and procedures from the BMTU team. No surprises, I wanted to stack all the odds in my favour so I could enter the BMTU full of confidence and knowledge.
It was anticipated that I would spend up to 3 weeks in the BMTU, I was in for 25 days. A 4 day fever and problems with the catheter removal delayed discharge.
Myra does not drive so I requested that I stay at the hospital and not go home during the early stages.
When I moved into the BMTU it was to be home for the next 3 weeks or thereabouts so I quickly became familiar with the unit, room and facilities before the “wipe out” days commence, then it would be too late. This includes the bathroom and the communal kitchen. It’s different to home. I set up the TV, DVD, CD, and radio for my own use, TV and radio was to be my contact with the outside world. How did they work, tried them all out, how does the remote control function. There was an internet connection but I did not have a laptop so passed on that.
What’s in the kitchen? Is there a toaster, microwave or fridge? How can I make a cup of coffee or tea? What food is free? Where do I store my food? How do I label it?
I was told as my white counts dropped I would became fatigued and sleep more than usual. Sudoku is a favourite pastime of mine but a few days after the fatigue started the Sudoku stopped so it was mental fatigue as well as physical. There was an improvement about day 18 when Sudoku recommenced but it wasn’t until I had been home for two weeks that I could notice a good improvement. A few books and magazines came with me but suffered the same fate as Sudoku.
As I did not know what my condition would be during transplant I chose not to have visitors or incoming phone calls except family and a few invited friends. I wasn’t there to get my toenails cut, I wasn’t there to entertain people, it’s my illness, my treatment, and I wanted to focus on me. It was a time to be selfish.
I was advised to take one day at a time during transplant, good advice that I recommend. I often split my time into morning, afternoon, evening. When the going got tough that became one hour at a time.
Myra happily took on the task of contact person phoning and emailing others of my progress. A small network passed this on from her information. Family, friends and neighbours were told what was happening prior to my admission and who to contact for information. It worked well for me though a people person or an extrovert may choose to do it differently. The only downside was I found the evenings a bit lonely.
Physically I had maintained my exercise routine and continued walking up to admission day. The hospital physio had prepared a programme to use during my stay to limit the loss of condition.
Myra had prepared food, laundry, communications and home matters.
The dietician had briefed us on suitable food and drinks.
My personal items: soap, shampoo, moisturiser, lip balm had been purchased new, mild and non-perfumed as requested by the BMTU nurse.

The planning worked well, only two surprises.
First was a four day fever with one day being a wipe out when I was fatigued to the max barely able to support myself.
Second was my catheter removal, that was a drama. Normally the nurse would remove it by pulling it out by hand. Unfortunately my skin had adhered to the plastic tube requiring a surgeon to surgically remove it delaying my discharge for two days.
Diarrhoea was worse and continued longer than anticipated.
My mouth and throat were better than anticipated mainly due to my strict mouth wash routine.

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]

Glossary:
BMTU: Bone marrow transplant unit.

Thursday, July 30, 2009

Central vein occlusion

A month after finishing my final VAD cycle for myeloma and 2 days after my stem cell harvest I developed blurred vision in my left eye. Harvest link
An appointment was made to see the eye clinic at the hospital where the eye was inspected and tests were carried out.
Results indicated the left eye showed a mild central vein occlusion. No treatment was required and I was advised that over the next 3 months my vision would either improve or deteriorate. My left eye improved and returned to normal.
Central vein occlusion is associated with abnormalities of blood flow and can be caused by systemic disease processes including multiple myeloma, protein C and S deficiency. [Source: causes link] I have read elsewhere but can’t find the source that the use of warfarin may contribute as well.
At diagnose (June 2001) I suffered a DVT in my right calf and was given warfarin therapy. DVT link
It was noted in my medical notes that the left eye central vein occlusion was felt to be secondary to my hypercoagulable state as a consequence of myeloma.

My sequence of events at time of blurred vision was:
Saturday 28th Oct: Warfarin therapy stopped. Low weight heparin commenced.
Wednesday 31st Oct: Apheresis line inserted.
Thursday 1st Nov: Stem cell harvest day 1 of 2.
Friday 2nd Nov: Stem cell harvest day 2 of 2.
Sunday 4th Nov: Blurred vision left eye first noticed.
Monday 5th Nov: Warfarin therapy recommenced.
Wednesday 7th Nov: Heparin stopped.

Sid’s theory on reasons why:
Two days of stem cell harvest moved my blood around like in a washing machine, disturbed the blood cells causing some coagulation to move into the fine blood vessels of the left eye.

Three and a half years later (April 2005) I developed blurred vision in my right eye.
An appointment was made to see the eye clinic at the hospital where the eye was inspected and tests were carried out.
Results indicated the right eye showed a mild central vein occlusion. No treatment was required and I was advised that over the next 3 months my vision would either improve or deteriorate. My right eye improved and returned to normal.
Can’t blame the stem cell harvest this time.

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.]

Glossary:
Hypercoagulable state: A hypercoagulable state is the medical term for a condition in which there is an abnormally increased tendency toward blood clotting (coagulation).
DVT: Deep vein thrombosis.

Monday, July 27, 2009

Myeloma transplant - Stem cell collection

Before my transplant could commence I had to have my own stem cell collected/harvested.
Stem cells normally live in the bone marrow. They can be encouraged to move out of the bone marrow and into the blood stream from where they can be collected. This process is called “stem cell mobilization” and usually involves the use of stem cell growth factors (e.g. G-CFS) in combination with chemotherapy.
[Source NZ Leukaemia and Blood foundation]
To commence the process I was given chemotherapy (cyclophosphamide) which gave me the normal nausea for a few days.
This was followed 5 days later by G-CSF daily injections by Myra to stimulate the stem cells to multiply eventually moving out of the bone marrow into the blood stream for collection. [Peripheral blood stem cell mobilization and collection]. Daily blood tests were now required to find the optimum time for stem cell collection.
An apheresis line [Central vein catheter in chest wall] was inserted into my chest for stem cell collection and also used during my ASCT. My catheter was inserted into a large vein in my chest then travelled down the vein into the top of my heart. It had 2 lumens (thin plastic tubes) an inlet and outlet. The nurses flushed my lumens and changed the dressings regularly to prevent infection. It was used during ASCT for fluids, chemotherapy, antibiotics and other drugs, blood and platelet transfusions, stem cell infusion. My veins are thin and hard to find so it was a relief to know all was being done down the central line eliminating the need for constant needles.
During the night before my stem cell harvest I experienced the most intense pain I have ever felt. Commencing about 1.00 am the pain was in my pelvis, top of legs and lower back. So intense I could not lie in bed or sit, only stand rigid unable to move. It bought me to a standstill for 30 minutes eventually disappearing after an hour. Myra phoned the hospital who advised panadol or morphine. This had no effect.
I have since read that Neupogen used to mobilize the stem cells usually causes mild to severe bone pain as the marrow goes into overdrive producing more blood and stem cells. This would have been the intense pain I experienced.
If you are reading this and about to have a peripheral blood stem cell mobilization and collection, please discuss the possibility of mobilisation pain and how to control it with your medical team. It slipped under my radar causing me great distress.
The following day after daily blood tests the hospital phoned and said the time was right for my day one of two stem cell harvests. All went well, no dramas. It took four hours, left me feeling tired, I was in bed asleep at 8.00 pm. Overnight I experienced more intense pain but not as intense as the first night. Next day was day two of stem cell harvest, again no dramas. Over the two days there were enough stem cells collected for two transplants. These were taken away for tests and to put in frozen storage.
Two days after the second stem cell collection I suffered blurred vision in my right eye resulting in a retina vein inclusion explained in the next posting.

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 [Here.]

Glossary:
ASCT: Autologous stem cell transplant.
G-CSF: granulocyte – colony stimulating factor.

Friday, July 24, 2009

Myeloma transplant - Pre-transplant planning

Once the transplant decision was made my planning began.
I spoke to other transplant patients, read about transplants extensively and obtained information from the transplant team, nurses and doctors as I wanted to know everything that could happen so if something did happen I new why, what it was and how to cope. No surprises, I wanted to stack all the odds in my favour. I couldn’t see the point in having major medical treatment, life saving treatment without knowing what, why, how, it’s part of controlling ones own destiny. All that information helped me prepare, plan and focus for what was coming up. I could visualise the whole process and this included pre transplant, the transplant and the recovery period at home. This helped in my mental preparation. I have used visualisation, mental preparation and positive affirmation before with success.
The most practical advice I received came from listening to and reading about other myeloma transplant patients, their story, and their experience. Their personal knowledge of what it felt like, how their body reacted, their emotions and feelings, what happened, what didn’t happen and what was unexpected.
I split my planning into three stages.
Pre transplant (this posting)
Transplant
Recovery

Your local hospital, transplant team and support team will give you handouts, booklets, DVD and access to excellent information of the whole transplant process. More information can be obtained from the internet, use your favourite myeloma web reference.

Pre transplant support
Meeting with my BMTU nurse introduced me to pre transplant information and my transplant support team.
I welcomed the new people into “Team Sid” and the Team Sid philosophy emphasising they were all on my side, in my team working together helping me.
My support team comprised:
Transplant coordinator
Transplant nurse
BMTU nurse
Registrar
Consultants.
Dietician
Pharmacist
Physiotherapist
Social worker
Cancer society; liaison nurse and counselling.
Leukaemia and blood support.
Caregiver, Myra.
GP General practitioner (my Doctor)

Pre transplant medical tests
Meeting with my BMTU nurse introduced me to pre transplant information on all the medical tests required.
Many tests and form filling, some continuing or repeated during transplant. My attitude was let’s do it. Tests are to confirm what is OK and to find if any thing is amiss, that’s all in my interest. Being inquisitive I learnt what the tests were for, followed the procedures with interest, enjoyed the moment meeting some interesting and very professional people along the way. I made it a positive experience. Part of my myeloma journey.
These tests included;
Dental check-up
24 hour urine test
Chest x-ray
Heart function electrocardiogram (ECG)
Lung function test
Bone marrow biopsy
Blood tests. Full blood count, kidney, liver, renal, thyroid
Clotting screen
Iron,
Blood glucose, virus screening

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 [Here.]

Tuesday, July 21, 2009

Myeloma transplant - Preparation

This is my story of my autologous stem cell transplant for myeloma at Auckland Hospital New Zealand bone marrow transplant unit December 2001. What my protocol was, how I planned it all, what my reaction was, how I coped, how I recovered and what help I can pass on to others. After a successful transplant I relapsed in 2007 and had a second transplant in 2008.
My story, my illness, my body, my medication, my transplant, others may have a different story.

At the time of my diagnose (2001) the conventional treatment in New Zealand for myeloma was chemotherapy, there weren’t the treatment options available like there are now (2009). Those considered healthy enough for a stem cell transplant had VAD followed by the transplant. Others had chemotherapy and its consequences.
My condition was serious, IgG kappa stage III with extensive bone involvement. [Test results at diagnose]. In spite of that I was considered reasonably healthy, a good candidate for a stem cell transplant, so after discussions on current and future treatment options with my medical team I chose VAD plus transplant. Natural remedies and alternate treatments were considered by me but I felt it was too late for those to be effective leaving me putting my trust in conventional treatment. Following my transplant I changed to a low GI diet, eliminated rubbish food, eliminated alcohol, increased fluids and juices, use selected vitamins, reduced stress and continued exercise to suit my condition. After a successful transplant I had six years myeloma free.

From my initial research into stem cell transplants for myeloma, I learnt that other patients had a varied reaction to their transplant experience. Some have had it easy, no major problems, able to spend a minimal time in hospital, more time at home with a short recovery period then back to work early. At the opposite end others have struggled with fatigue, nausea and vomiting, diarrhoea, mucositis, rash, fever, kidney problems, pneumonia and more. Fatigue often continuing during a long recovery period taking up to 6 months to recover. Most patients vary in between those two extremes.
Physical condition, type of myeloma, planning and preparation, personal attitude, mental toughness, and the ability to tolerate melphalan and other treatment medication all contribute.
Except for how I tolerated VAD there was nothing available to indicate to me how I would cope so my preparation was based on a worst case scenario though being an optimistic person hoped I for an easy ride.
The treatment protocol may vary in different countries and hospitals and according to a patient’s health status.

This is the first 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 [Here.]