Some good news today and a disappointment.
My Haematologist was unavailable, had the registrar instead. Valcade application has been declined by Pharmac again, more about that when I return from my holiday.
Now the good news.
August 2008 I had my second autologous stem cell transplant, early 2009 my IgG level started to rise.
After 4 months of cyclophosphamide and dexamethasone my IgG level has lowered from 24 down to 8.8 (880 USA). The normal range is 7 to 16 (700 to 1600 USA). This is the lowest it has been since first diagnose, then it was 80!!!
My bone pain and restricted movement have disappeared. I can drive to a car parking building, reach out to get my ticket pain free. When reversing my car I can twist my body and see where I am going. Road and shopping mall speed humps are now travelled at a faster speed, to hell with the suspension let’s have catch up time.
I can now run after and chase my grandchildren.
All my myeloma friends will understand what I am saying. With myeloma, when the good times are there, take them.
I feeeeel goooood.
Tuesday, October 20, 2009
Sunday, October 11, 2009
Been too busy!
My last posting was back on September 19th. All is well, just been too busy, some of which is explained in this posting.
Chemotherapy and dexamethasone has reduced my IgG down to 10. It was decided one more cycle then reassess. What happens next? I will listen to my consultant on 20th October then present my list of my options and questions, an important day for me. There is still no decision on Valcade being funded by our health system.
Myra and I attended a Lymphoma awareness day here in Auckland put on by the Leukaemia and Blood Foundation (LBF). Survivorship was the theme, something close to my heart.
That got me motivated to ask our myeloma group co-ordinator if I could prepare and present a PowerPoint presentation for our myeloma support group on my survival from diagnose in 2001 through to the end of my initial VAD treatment. She was happy for me to do that so I chose 6 survival skills that I used which I will elaborate on in other postings. A previous posting Decision made to be a myeloma survivor was my starting point.
There were a surprising number of questions from the group on my bone pain which will be another presentation next year. Two previous postings Myeloma bone pain and Morphine for myeloma bone pain are popular search engine hits on my blog. Some one with myeloma bone knowledge like orthopaedics will talk first followed by my experience.
Work hours have increased since a mid-year downturn. I am a structural draughtsperson on a casual employment contract that suits me for health reasons. No more long hours or weekends. Work keeps me normal, my brain active and brings the dollars in. That along with more time on my religious studies has cut into blog time.
My “transplant series” has about 6 more postings to complete. That will be followed by the first plateau/remission stage, more about fun and life there.
At the end of the month we are having 2 weeks holiday (USA = vacation) so no postings then.
It’s spring here in New Zealand, warmer weather so time for vegetable garden preparation and growing. In particular money maker and sweet 100 tomatoes, spring onion, lettuce, radish, silver beet and leeks.
Have fun, be happy.
Chemotherapy and dexamethasone has reduced my IgG down to 10. It was decided one more cycle then reassess. What happens next? I will listen to my consultant on 20th October then present my list of my options and questions, an important day for me. There is still no decision on Valcade being funded by our health system.
Myra and I attended a Lymphoma awareness day here in Auckland put on by the Leukaemia and Blood Foundation (LBF). Survivorship was the theme, something close to my heart.
That got me motivated to ask our myeloma group co-ordinator if I could prepare and present a PowerPoint presentation for our myeloma support group on my survival from diagnose in 2001 through to the end of my initial VAD treatment. She was happy for me to do that so I chose 6 survival skills that I used which I will elaborate on in other postings. A previous posting Decision made to be a myeloma survivor was my starting point.
There were a surprising number of questions from the group on my bone pain which will be another presentation next year. Two previous postings Myeloma bone pain and Morphine for myeloma bone pain are popular search engine hits on my blog. Some one with myeloma bone knowledge like orthopaedics will talk first followed by my experience.
Work hours have increased since a mid-year downturn. I am a structural draughtsperson on a casual employment contract that suits me for health reasons. No more long hours or weekends. Work keeps me normal, my brain active and brings the dollars in. That along with more time on my religious studies has cut into blog time.
My “transplant series” has about 6 more postings to complete. That will be followed by the first plateau/remission stage, more about fun and life there.
At the end of the month we are having 2 weeks holiday (USA = vacation) so no postings then.
It’s spring here in New Zealand, warmer weather so time for vegetable garden preparation and growing. In particular money maker and sweet 100 tomatoes, spring onion, lettuce, radish, silver beet and leeks.
Have fun, be happy.
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