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.

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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.

Soft tissue plasmacytoma

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.

Myeloma plateau or remission

Now that I had reached my first myeloma plateau stage people were asking “what is a plateau stage”?
When I was diagnosed with myeloma in 2001 myeloma was considered a cancer that had no cure. It was explained I would have treatment, recover, then enter a plateau stage. This would be followed by a relapse, more treatment, then another plateau stage. This cycle of treatment/plateau/relapse was to be my future with the plateau stage getting progressively shorter. Treatment was chemotherapy; Thalidomide was on the horizon, that was it.
Plateau was described as a stable stage of my disease following a good response to anti cancer treatment. The word remission was not used.
It is only in recent times that the word remission has been introduced into the myeloma vocabulary. Now it is:
CR = complete remission.
VGPR = very good partial remission.
PR = partial remission.
NR = no remission.
The advent of the new generation treatments Thalidomide, Velcade, Revlimid and their alphabet combinations VTD, RTD, VPM etc, etc have changed outcomes. Improved treatment responses means people are now living longer with myeloma.
With total therapy treatment now available CR is the expected outcome. If I was a participant of total therapy treatment I would be totally focused on CR and would be telling everyone my entire goal is CR. Plateau would not be used.
My reference to plateau stage is now being challenged by myeloma treatment moving forward, it is time for me to reassess.