Rev-lite trial: cycle 2, day 18.

My cycle 2 of Rev-lite trial is at day 18 with some good achievements in the last 2 weeks.
There have been no problems with the trial treatment of lenalidomide and dexamethasone, less fatigue, sleeping well with the occasional extra nap when tired.
First achievement is with my fractured right femur where I have moved from using the big walker for support to using one crutch to using no crutch. I can now bear weight on the leg and only use the crutch in public to protect myself. A 30 minute walk each day is now a regular event.
Being able to walk means I can now drive the car which gives me more independence.
My main problem in showering has been fear of falling. This was overcome once I was able to bear more weight on the leg giving me confidence to shower and dry myself.
My pain relief has been reduced again, most myeloma bone pain has gone allowing me to spend time sleeping on my sides rather than only my back. To roll over from side to side in bed is bliss.
The big achievement is being able walk the stairs at home. Yesterday we moved from the single beds downstairs back to the master bedroom upstairs and into our Queen bed. The bed upstairs has a Woolrest woollen underlay between the mattress and bottom sheet. I missed the warmth it gives. Waking overnight to turn over I could feel warmer especially where my body was in contact with the underlay compared to no underlay. Best of all was sleeping with Myra next to me again.
Next achievement will be to maintain my Rev-lite trial progress, continue regaining strength and fitness and a return to work part time.
As I get better I am thinking less of myeloma, illness and myself. Now it is other things as well, signs of getting back to normal.

The Pine cone man

During myeloma relapse 1 recovery (2007) from myeloma treatment I had to devise ways to regain my fitness and strength.
About 3 blocks from home is a very large park with walkways, trees and seats. My initial goal was to walk to the park and return.
That was accomplished fairly quickly. Soon I was adding walking in the park extending the walk as fatigue reduced and I became fitter.
In the park are a large number of pine trees which shed pine cones good for home fire burning.
Ah ha I thought, there is another fitness idea.
My left humerus had just been rodded due to a plasmacytoma destroying the bone at mid shaft. The arm and shoulder needed strengthening. On my park walks I would now take an eco bag to fill with pine cones. I used the left arm to carry the bag flexing the arm along with other exercises as I walked along. Over time it all became stronger.
Then Myra dropped a bomb shell. She said, “We use electricity for heating. The pine cones will have to go.” After negotiations with her (I won) it was decided after drying out I would store the pine cones in rubbish sacks and place outside and cover with a rain proof cover ready to give to those who needed them over winter.
A bag full of dry pine cones on a cold, wet winter’s night is a welcome surprise.
I still continue collecting pine cones on my walks and have found some more parks with pine trees that I drive to. My two grandchildren have become expert pine tree finders.
Best time for collecting pine cones is after strong winds or a storm.

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.

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)

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]

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]

VAD for myeloma, end of second cycle

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