Tuesday, June 1, 2010

It's been two tough months

April/May 2010 have been 2 tough months for me in my myeloma journey.
Myeloma returned back to me last year with a relapse. Treatment failed to put me into a plateau stage, my hopes lay in new treatment available in a clinical trial.
Qualifying for the trial became the easy part, getting through 2 setbacks to commence the trial was more of a challenge. My trial started with one day to spare.
May bought with it the passing on of 4 myeloma friends, 2 bloggers and 2 local myeloma friends. There may have been more bloggers while I was in hospital.
One myeloma friend in particular left me grieving deeply. A 6 year myeloma friendship is difficult to end.

All is not lost, it is now 9 years since my initial diagnose with prognosis at that time of 3 to 5 years. My positive attitude, pro-active stance, interest in gaining myeloma knowledge and being willing to fight for myself remain. I will never give up. The love and support from my wife Myra has been huge, could not have got to where I am with out it.
With myeloma being a series of treatment and plateau I have always tried to get back to “normal” after treatment as soon as possible, living a normal life with myeloma pushed into the background.
There are now new generation treatments not previously available to me, combinations of old and new treatments and stem cell transplants giving us longer plateau periods along with trials for more new treatments underway now.
New treatments not available to me in 2001 include Thalidomide (Thalomid), Bortezomib (Valcade) and Lenalidomide (Revlimid).
Unfortunately Bortezomib and Lenalidomide are still not available in New Zealand through our public health funding service Pharmac.
Support for frontline treatment, relapsed disease, clinical trials and supportive care is far more advanced now.
The future looks promising, the search for a cure continues.

Since beginning blogging 18 months ago I have found a new source of help and inspiration, an international family of myeloma support on the internet. To all you folks who read blogs, comment or email to myself and other bloggers a very big thank you.

Revlite clinical trial
Coping with death of a myeloma friend
Treatment example


feresaknit said...

Thank you, Sid for showing us how trials can be overcome and 'normal' life continue.

Sandy said...

It is hard to lose the communication between friends; harder still when those connections are between those who share a deep commonality... I am sorry for your losses.
And I know you have been coming back from your own relapse, so I just wanted to pop in and say I am intending that June offers you a reprieve and some good days of healing and hope.

Nick said...

Once again, Sid, I am moved by your positivity, strength of spirit, and honesty in conveying the struggle of coping with this disease. Do not relent! Keep your spirits high. You have many kindred spirits thinking of you, praying for you, and taking strength from you.

You will continue to defeat this disease. Show it no quarter!

Your friend across an ocean,