Following the diagnosis of chronic myeloid leukaemia, my head did eventually stop spinning. As the days passed, The Thinker and I began to get used to the idea in a way. Most importantly though, we began to learn about the disease. Despite how scared we were, we found out that knowledge is power. We became armed with information that would give us the strength to move forward.The best advice that I could give anyone that finds themselves in a similar situation is to keep asking questions and searching for answers until you understand what’s going on. There will be information that makes you scared for your future but there will also be information that will give you hope. You need to know just what it is you’re dealing with. I was fortunate to stumble across some very supportive internet groups with caring and knowledgeable members. Together with my doctors, family and friends they formed my support network.
Over the last couple of years I have learnt more about CML than I ever thought possible for a disease that I didn’t even know existed. Of course I knew about leukaemia, but I didn’t know there were different types, each with their own characteristics, prognosis and treatment. Here’s a little background of the disease.
What is CML
Chronic myeloid leukaemia is the least common of the four types of leukaemia. In Australia around 250 people each year are diagnosed (how did I win that jackpot?). Most often it affects men over the age of 50, but obviously younger people can get it to.
CML is characterised by too many white cells in the blood. These cells are immature so they don’t work properly and they crowd out the other cells, eventually causing a susceptability to infection, bleeding and bruising. As the name suggests, it usually develops slowly. However in some cases it can progress quite quickly to more serious stages.
Usually a blood examination will indicate CML. However for a definate diagnosis a bone marrow biopsy is performed (what joy). The disease is characterised by a chromosomal translocation. In this case the “tails” of chromosome 9 and 22 swap places creating a new gene.
The only cure for CML is a stem cell transplant. This used to be the only option for sufferers who failed the not overly successful drug treatments. However, and this is the exciting part, CML treatment has undergone, and continues to undergo, a rapid transformation in the last six years or so. Ground breaking targeted drug therapy, initially in the form of Glivec and now newer drugs, has meant that the disease is now becoming for many people a truly chronic illness rather than a terminal one. These drugs are pretty amazing in that they block messages from the leukaemia cells at a molecular level.
If you’re interested to know more visit the Leukaemia Foundation or The Leukemia & Lymphoma Society. While you’re there, please consider a donation to these very worthwhile causes.
Where am I now?
I am so fortunate to have these drugs available for my treatment. I take some pills each day, suffer reasonably mild side effects, undergo the occasional bone marrow biopsy and regular blood tests. My disease is being controlled. I get to lead a normal life, looking after my kids and husband for which I will be forever grateful. This is somewhere I wasn’t sure I’d be two years ago.
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Hi Journeyer,
Sounds like you have got the CML in a good perspective in your life. My love and life partner Eric the Soapmaker Extraordinaire is also battling a rare cancer called Carcinoid Cancer ( his blog is at http://moonhaven.com.au/ericsstory/). we can both identify with your journey …not only the “in a spin stage” and then the “gathering information chapter” and then on to “living with cancer” which is ongoing.
I suppose our mantra for life now is “life is for living …you may as well live it!”
Enjoy and do drop by some time.
Leonie
Leonie of Moon Havens last blog post..The Art of the Turkish Bath (Hamam)
I will read it later to learn more about CML. I am in awe of your courage to share this.How very fortunate you are to have CML in control.I hope that there will be a cure soon.
Trishs last blog post..Aerobix and other heavy stuff
Eric sounds like an amazing man, Leonie. You are indeed living by your mantra. After reading your blogs it seems like the two of you hardly have time to catch breath!Trish, I can’t imagine any other way of dealing with this illness. I don’t think I’m being particularly courageous. The only thing I can do is live my life as I know how. There is some amazing research being done and we are closer to a cure every day.
Congratulations on your being able to control CML – as a Non-Hodgkin’s lymphoma survivor myself, I know it’s a tough road. Will say a prayer for continued recovery!
Tip Divas last blog post..Top Ten Tips – Having An Ice-Cream Sundae Party
Congratulations on beating Non-Hodgkin’s lymphoma Tip Diva and thank you for your prayer.
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