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.

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

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

This is a daily diary of my autologous stem cell transplant (ASCT) for multiple myeloma compiled from my diary and my own recollections.
My ASCT daily diary is over 4 postings, this is posting 3 of 4; days 12 to 15.
Link to posting 1; Days -02 to 05
Link to posting 2; Days 06 to 11

Day 12: White bloods rise.
Bad night, took Temazepan, 2 hours good sleep then disturbed sleep. Woke with headache at midnight, took Panadol. Headache again at 5am again took Panadol. Didn’t sleep well overnight at all.
White blood count rose above 0 today, first rise since bottoming out on day 7.
Mouth feeling better reflected that, major breakthrough there. I am climbing out of the swamp.
Tried to sleep this afternoon, not too successful as woken up 3 times. Feeling better late afternoon.
Nausea setback at 5.45pm to 7.0pm, very strong. Given Maxalon through central line.
Trying to achieve 1.5L fluid intake today, previous average 900ml. IV fluids continue but at a lower rate.
Fluid intake today 1.25L first time over 1.0L, will do better when off the drip during the day.
Temperature up tonight 38.2C (100.8F) at 9.30pm.
Treatment/medication: Panadol x3, Clexane, Temazepan, Gentamian, [anti-nausea Maxalon x3, Zofran, Haloperidol]. [Antibiotics: Acyclovir x2, Cefpirone x2].
Red bloods 4.02; white bloods 0.52; platelets 60; weight 66.60kg (146.8 lbs)

Day 13:
Good sleep to 3.0am, woke with dry mouth. Nausea at 6.0am, had Maxalon. Lots of mucus, better after lots of burps. Temperature 37.8C.
Visit by physiotherapist. Continuing stretching, advised to keep using the Exercycle even if it is only 4 to 5 minutes a day.
Doctor took culture off rash. Nausea again from 1.0pm to 4.30pm controlled by Maxalon. Nausea restricted food and drink, I will do anything to avoid throwing up.
One hour sleep this afternoon. Fluid intake 1.6L today. Temperature 38.2C at 9.0pm.
Treatment/medication: Panadol, Clexane, Gentamian, [Anti-nausea: Maxalon x3, Haloperidol x2], [Antibiotics: Acyclovir x2, Cefpirone x2].
Weight 65.3kg (144 lbs)

Day 14: Fever starts.
Good sleep overnight, mouth and lips still dry. Nurse said dilute the mouth wash and increase the lip balm.
Another nurse hint: for a dry mouth try sucking pineapple. Back on the drip all day.
Feeling hot this morning, cold waves after lunch then feeling cold. After coldness my temperature rose and I got hot again.
Doctor checked me and said we will change my antibiotics. Stop Cefpirone, add Meropenen. If successful the rash will reduce in 2 days.
Felt better in the evening.
This was the start of 4 days of fever. It was a new experience for me to suffer high temperatures, cold chills, rash and debilitating fatigue. My feeling was leave me alone, just let me be sick. I learnt what it was like to be bed ridden. That left me with a better appreciation of what others have told me about their fatigue experiences, easy to listen to, hard to imagine.
Treatment/medication: Panadol x3, Clexane, Temazepan, Gentamian, [Anti-nausea: Maxalon x2, Haloperidol x2], [Antibiotics: Acyclovir x2, Cefpirone x2, Meropenen].
Weight 65.8kg (145 lbs)
Temp 0500---37.8C---100.0F
Temp 0900---38.1C---101.6F
Temp 1300---36.2C--- 97.2F (reduced by Panadol
Temp 1630---38.5C---101.3F
Temp 2020---38.1C---100.6F

Day 15: Incontinence.
Good sleep, up to the toilet for a pee every 2 hours over night.
Still on IV fluids
Tired, sleepy, rigors, fatigue coming on. Temperature up, spiked over the 38C.
Cold flushes after lunch, nausea continues, body rash still present first noted day 5. Antibiotic changed yesterday to see if that is the cause of the rash.
In the evening I did not feel like peeing until I stood up. On standing I could not make it to the toilet and wet my pants each time. The Doctor said ”ah, incontinence”. He tested my reflexes and wanted to get orthopaedics to investigate a link between my collapsed vertebrae and the incontinence.
Treatment/medication: Panadol, Clexane, Gentamian, [Anti-nausea: Maxalon x3, Haloperidol], [Antibiotics: Acyclovir x2, Meropenen].
Red bloods 3.78; white bloods 1.25; platelets 90; weight 66.3kg (146.2 lbs)
Temp 0500---38.1C---100.6F
Temp 0900---38.8C---101.8F
Temp 1230---38.2C---100.8F
Temp 1630---38.7C---101.7F
Temp 1900---38.0C---100.4F