Why did this happen to me?

I was due to start my rescheduled myeloma Revlite clinical trial on 15th April 2010. Unfortunately the evening before the trial I developed huge pain in my right femur the one that had been rodded and pinned 2 weeks prior. I could not apply any weight to my right leg. Next morning I could not get out of bed so phoned the hospital who cancelled my trial and ordered an ambulance to take me to hospital.
X-rays were taken that showed I had a small fracture at the lytic lesion.
The next 8 days were spent in hospital. Orthopaedics confirmed that the rod and pins were all in place with no problems there.
My pain killers were increased and physiotherapy commenced with leg exercises in bed. The rod and pins in my left humerus were giving me pain limiting the use of crutches. It was decided I needed a walker designed to take pressure off my arms. It has 2 handles for my hands like a triathletes handle bar and a flat padded base that I can lean on.
After 8 days I was released home in a wheel chair along with my walker.
Next haematologist appointment is Tuesday 27th April where we discuss what happens next.
This has been a huge disappointment to me with 2 attempts at the clinical trial being postponed at the last minute.
After reading of side effects of Lenalidomid and dexamethasone that others have experienced I wonder if it is worth having chemotherapy until the leg fracture is healed and I am mobile again. The side effect of cramp on a fractured leg worries me.

Lytic lesion right femur update

My right femur is making good progress 13 days after full length rod and pins to support a lytic lesion.
There was no bone fracture so that reduced the pain. I am getting about on crutches with good rotation of the ankle, knee and hip.
The wounds are clean with no seepage.
Next Monday I visit the orthopaedic out patients for x-ray, stitches removed and examination.
The following day I have an appointment with my haematologist to review my clinical trial that never got started. The day before my leg rodding I had an MRI scan which identified a few problems that require attention. When these are addressed will have to be discussed.
My right leg needs radiation. I can’t start the trial until 4 weeks after radiation.

Lytic lesion right femur

I have been offline for 12 days, here’s why.
Sunday 21st March 2010 I was out for an hours walk with Myra. After 5 minutes I started limping. 20 minutes later I had to stop for a rest then limped slowly back to the car. We drove home where the situation got better with pain relief and rest.
Next day while off to work in the bus I developed back spasms and more pain causing me to return home for pain relief and rest. Took the next day off. The following day no improvement so phoned daystay who said come in for an examination and x-rays.
The x-rays went to radiology and orthopaedics and later that day my good news/bad news came back.
Good news was we know what the problem is.
Bad news is we are transferring you to North Shore hospital immediately by ambulance.
My right thigh bone (femur) has a pathological lytic lesion in the bottom third about to fracture. Myeloma was eating it away from the inside out. There had been no prior warning, no pain at all. I was unaware of a lesion there, this was totally unexpected.
So I was hospitalised for an intramedullary reconstruction of the right femur. Full length rod and pins.
After the anaesthetic block wore off the leg became very painful. I am home now; pain is getting less though I am still weak and tired. Movement is returning to the leg so I am starting to get around on crutches.

Myeloma relapse 1

My autologous stem cell transplant for myeloma in December 2001 took me into the plateau stage. I was free of bone pain, life had virtually returned to normal,
The plateau “golden years” continued until September 2006 when I suffered a pathological fracture of my left mid shaft humerus. It sneaked up on me, came from nowhere. At that time my test results showed no indication of myeloma, all was normal, I was feeling good.
In January 2007 I commenced maintenance treatment of Thalidomide, 50mg/day.
All remained normal until December 2007 when my IgG and paraprotein started to increase. Until then because of the normal test results I could not accept that myeloma had returned. Perhaps I was in denial. I wanted the plateau dream to continue.
Faced with the facts of these increased results my denial was over. It was time to face the truth; plateau 1 had come to an end, relapse 1 had commenced.
I developed a lytic lesion in the surgical neck of the left humerus. That was treated with radiation.
Peripheral neuropathy from Thalidomide was becoming an increasing problem.
A lytic lesion developed in the mid shaft right humerus and shoulder. That also was treated with radiation.
Bone pain was increasing, IgG and paraprotein was increasing, myeloma had well and truly returned.
It was decision time, 3 options were considered.
1. Increase Thalidomide with a corresponding increase in peripheral neuropathy.
2. Add or change to cyclophosphomide and dexamethasone.
3. A second ASCT using the remaining stem cells collected in 2001.
In New Zealand we have a free public health system. Velcade and Revlimid are not available from Pharmac the treatment managing agency so were not considered.
In August 2008 I was given autologous stem cell transplant 2 which put me into plateau 2.

Plateau stage: A stable stage of my disease following a good response to anti cancer treatment.

I found my ears

One of the positives from having myeloma is I found my ears!
Before myeloma I was a typical male, didn’t listen, wouldn’t listen, too busy too listen.
As my daughter used to say, “Dad, your ears are painted on”. Though I wouldn’t admit it, she was right.
Being diagnosed with myeloma, learning about myeloma and going through initial treatment I had to gain knowledge by listening to and trusting others. This is when I had to stop, shut up and listen. Good things happened when I learnt to listen.
I realised that the 2 lugs on the side of my head had another purpose other than holding my glasses on, they are a listening device. When I stopped and listened people made sense.
Learning to listen has been one of my survival skills.

Bone marrow biopsy

This week in preparation for a clinical trial I had a bone marrow biopsy.
I have had 4 previous bone marrow biopsies during my myeloma journey.
Unlike a few unfortunate others I have had no problems except for a little soreness over the following 2 days.
The procedure at my hospital is to have a local anaesthetic and a mild sedative, I agree with that.
The sedative puts me to sleep; I feel nothing and wake up in the recovery room when it is all over.
Myra always comes along to watch and said that when they pull the sample out my toes wriggle!!
Now I wait for the results.

Soft tissue plasmacytoma update 1

A quick update.
Went to the oncologist last week for a 6 week post radiation follow up. All is well; the two soft tissue plasmacytoma on my skull have reduced as expected. I asked for my hair back and all I got was a smile.
Unfortunately 3 more lumps have appeared and my IgG and paraprotein are rising.
The problem now is not soft tissue plasmacytoma in isolation but my myeloma being systemic (throughout the body). We need to treat the cause, myeloma returning.
I have been in discussion with my haematologist. The last treatment cyclophosphomide and dexamethasone only gave me 3 months remission. Valcade and Lenalidomid are not available by Pharmac for free in NZ, my options are reducing. As a result we are exploring the option of a clinical trial, preferably Lenalidomide and dexamethasone.
Big appointment Wednesday 10th afternoon.
Will tell you more when I know for sure.

Link:
Soft tissue plasmacytoma
Pharmac

Survivorship – 1: Proactive stance

Survivorship presentation on myeloma survivorship, my first four months.
Part 1 of 6. Proactive stance

1. Survivorship Pro-active stance.
Before I could move forward and fight my disease I had to address issues that would hold back my progress. There was to be nothing holding me back.
Ownership: I had to take ownership of my illness, it was my disease no one else’s. It was then I created my saying “my body, my illness, my treatment.”
Denial: When my doctor told me I had cancer, multiple myeloma, I did not want to believe him. I told him he was wrong, it was some one else’s results. Denial was short, I faced the truth quickly.
Emotion: Tears flowed; at times I could barely talk. I learnt not to let the emotions build up too high; it was that “C” word. I learnt how to release the emotion early, I learnt how to cry.
Anger: I was angry, why me, I have too much to live for, too much to loose, too much work to do. Talking it through with others helped. Like emotions I learnt to deal with anger as it happened, don’t let it build up.
No abuse: There was potential for abuse from me: mental, physical, emotional. My life philosophy of no abuse was reaffirmed. No abuse, not negotiable.
Confront death: Myeloma is a cancer with no cure, a consequence of myeloma is death. I was young, only 53, thought I was bullet proof, never considered death, had no time for it, death was for other people. I had to confront death, bring it out into the open to move forward.
Be a pro-active patient: I wanted to know everything about myeloma, treatment, the hospital system. Being a passive patient was not for me, I wanted to be pro-active.

Links to previous relevant postings:

You have cancer.

Decision made to be a myeloma survivor.

Confronting death from myeloma.

Survivorship – The first 4 months

Late last year (2009) I gave a presentation to my myeloma group on myeloma survivorship, my first four months.
My presentation commenced with my condition at diagnose and I discussed if I wanted to be a survivor.
Some of my strengths are: Positive attitude, can see the big picture, don’t get bogged down with trivia, good planning and organisational skills, a willingness to learn, a self belief that I can do anything. How I used those strengths as part of my survivorship skills was explained in the six survivorship skills I identified.

Pro-active stance: Take ownership of my illness. Before I could move forward and fight my disease I had to address issues that would hold me back.
Myeloma support group: A support system with other myeloma patients.
Team Sid: A network of practical help and support.
Create a myeloma and medical knowledge base: To take ownership of my illness I had to learn about my illness.
Maintain a positive attitude: Continue what I always do, be positive.
Create positive affirmations: Compliments a positive attitude.

My next six postings will expand upon those six survivorship skills.

Two survivorship definitions:
Stages of survivorship: Debbie Moore LBF NZ.
Acute –Begins with diagnosis and spans the time of further diagnostic and treatment effects.
Livestrong - Lance Armstrong Foundation.
Survivorship begins at diagnosis, the moment your battle with cancer begins, and continues through your treatment and beyond.

Do it sooner rather than later

Six months after my first stem cell transplant for myeloma (2001) Myra and I discussed my progress and medical future with my haematologist. All was going well, my bloods, IgG etc were normal.
We said we had intended to travel as we got older. He said “do it sooner rather than later.” Rather ominous but that’s myeloma.
He said because of my compromised immune system try to avoid long haul flights and be selective where we travel. Avoid counties with limited hygiene, over crowding and be careful of what I ate.
I was 54, still had to work for an income. Our decision was easy.
We would plan a holiday (vacation) of 2 to 3 weeks once a year. Exploring New Zealand where we live and Australia a three hour flight across the Tasman Sea.
Our themes were keep it simple, let’s have fun, let’s create some memories, lets spend quality time together while I am well.
As we have a son and daughter-in-law in Sydney we factored a few visits there.
Our Australian holidays have been:
Cairns 2003
Sunshine Coast June 2004
Gold Coast 2005
Sydney May 2006
Sydney Christmas 2006
Gold Coast to Sydney Sunshine Coast (2007)
Sydney (NRL grand Final) September 2007
Melbourne May 2009
Sunshine Coast November 2009
Australia has a warmer climate than New Zealand. We travel in May (southern hemisphere autumn/fall) when the day time temperature is about 24C (75F).
Lots of good memories.