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.

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.

The golden archway

During my first autologous stem cell transplant I used a visualisation scenario.
Link: Myeloma transplant – visualisation.
The final part of that visualisation scenario was to reach the Golden Archway which represented my post transplant 100 day test results. To pass through the Golden Archway into a future I needed to have successful results.
This I achieved, my IgG was 9.6 g/l (960 mg/dl). At diagnose my IgG was 80g/l (8000 mg/l), pre transplant it was 23.1 g/l (2310 mg/dl). Success, I walked through the Golden Archway.
My future was unknown, how long would I be in the plateau stage, everyone wants to know the answer to that. There is no answer until the plateau stage finishes, then you will know.
My intention was to enjoy every moment, take advantage of my second chance, live for the “now’.
I needed an income so returned to work, initially part time, progressively moving to full time negotiating no more long hours.
Myra and I had had wanted to travel after retirement. After my haematologist said “travel, do it sooner than later” those travel plans were bought forward though somewhat reduced by my health and immune restrictions and income.
Walking through the Golden Archway created a new beginning.

Part 3 Plateau stage commencement

My retrospective myeloma blog continues.
Part 1 “The beginning” covering initial diagnose and treatment was completed July 2009: Link to summary of part 1 the beginning.
Part 2 ASCT was completed December 2009: Link to summary of part 2 ASCT for myeloma.
I now start Part 3; the first plateau stage.
Results from my 100 day post ASCT were all good, IgG had reduced to 10.3g/l (1030mg/dl) from 80g/L (8000mg/dl) at diagnose and 31g/L 3100mg/dl) prior to ASCT.
My health was good, I had made an excellent recovery, my plateau stage had commenced.
This continued relatively uneventful until September 2006 when over a short period of time a plasmacytoma grew in my left humerus and shattered the bone.
IgG levels were still down and it wasn’t until the end of 2007 that they started to increase. My relapse had begun.
What happened after that will be in Part 4 “the relapse”.
The word remission is now frequently used in relation to successful myeloma treatments. When I was first diagnosed the term remission was not used as it was considered the myeloma will return. More about my views on that in a future posting.