Onwards and Upwards No. 1
Hello my healing team,
I hope this update finds you well!
Over the past week or two I have been undergoing my second round of testing to confirm my status as being in Complete Remission (CR). This testing has been completed under the care of Prof. Andrew Spencer (the Nutty Professor), using equipment and methods that can assess my Myeloma with more accuracy and to a greater level of detection.
As it works out, there is a better classification of remission than CR which is ‘stringent’ Complete Remission (sCR). Generally, CR implies that I have less than 5% cancer cells detected in my bone marrow, and no more lesions detected on my bones. sCR requires the cancer cells to be less than 0.1% using the new highly accurate testing methods. sCR is important for two reasons:
- people in sCR typically stay in remission longer and are likely to have an increased life expectancy.
- new research suggests that people in sCR don’t need to go onto a ‘maintenance’ chemotherapy program, whereas people in CR do need the maintenance. Maintenance chemotherapy is typically low dose, is given to most people who achieve remission and is used to keep the cancer under control so that remission is sustained for a longer duration. If I achieve sCR, I get a drug holiday and avoid having to ingest drugs on a weekly basis that indiscriminately kill my healthy cells and the cancer cells.
When I was first diagnosed in March, I was found to have 25% Myeloma cells in my bone marrow. With the recent testing, results suggest I have 0.18%. Not quite sCR but as good as!! With this, The Nutty Professor and I have decided to skip the maintenance chemo and see how it all goes. It really is quite hard to know what is the best way forward as there is no crystal ball and you never know how my body, or rather my temple, will respond. Fingers crossed……again.
As a person with cancer, when I start feeling better (or normal), it is easy to be lulled into a space where I forget that I have a terminal disease. Actually, I never forget, rather it is more that I am not constantly reminded that I have the disease. It’s a nice place, but fraught with disappointment. The disappointment comes when I get the latest test results and am bluntly reminded that the cancer prevails, albeit in low numbers. I like being in the place where I am feeling normal, but it is a fragile ledge that I sit on as I know that ledge can crumble quickly, with there being only one way to fall.
Last Wednesday, I was the extra special guest on 88.3 Southern FM (said in a smooth DJ voice). My Kinesiologist, Nan Abbott kindly hosted me on her weekly program. Going on the radio was a heap of fun and a great experience. We spent an hour talking on my favourite topic……me!! For those that are interested, or those who are so thoroughly bored that they are willing to waste an hour, I have a recording of the program and will post it on the internet soon.
Next week I have an MRI and X-ray on my shoulder to assess how it has repaired. It feels good. Let’s hope it is good.
Have a good weekend and I hope you win something on the Melbourne Cup.
Take care team.
Geoff
Photo showing our camping at Cape Patterson on the weekend. The wind came along and blew my hair in again.
