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.