It’s been about a month since I last checked in and what a wild but wonderful time! I was extremely grateful and had so much fun playing MainStage at Trackside, Country Fest on the Grand, & Kinstock with my Best Friends and We shot the music video for our Current single ‘Hard To Get’ as well, which comes out next week ????
Last time I checked in my blood counts were up a bit and looking like maybe we had found the right dose and were heading towards some stability- Unfortunately at my checkup on July 2nd they had declined again significantly and my PCR showed considerable progression of the CML since February.
We discussed the reality that I’ve been unable to tolerate Sprycel treatments from the beginning and may have to look at other options. We decided to give my body one more month to see if it can get itself together! If my counts don’t recover by my next check in on July 31st, I will be referred to Dr. Lipton, Who is one of the leading Specialists for CML treatment in Canada. I had the pleasure of meeting him at the CML conference I attended in May and he was an incredible Speaker and Person. While my doctor is wonderful and amazing, she believes that he will have a better chance of finding the right ‘next step’ for me.
While many people struggle to tolerate TKI drugs due to the side effects (Nausea, Rash, Mouth Sores, Insomnia, Bone Pain etc) there are several options and most are able to switch to another drug and find one that has less physical side effects for them.
In my case, my physical drug side effects have been minimal compared to most which I’m SO grateful for! Rather, the targeted TKI treatment which ‘tells’ the PH+ Chromosome in my Bone Marrow to stop expressing itself is doing it’s job SO WELL, it’s also telling my healthy non PH+ cells in my bone marrow to stop doing their jobs too. This can be common in the early weeks of treatment, but generally corrects itself early on. In my case it has not corrected and has resulted in four months of Pancytopenia (Very low counts of all three types of blood cells). Since the only way to battle the Chronic Myeloid Leukaemia is with lifetime TKI treatment, this continued response to TKI’s becomes a real issue as perpetual low counts can have many adverse side effects of their own, aside from the CML.
There are a couple other drugs options that we are considering next, however they all work in very similar ways and since my intolerance is not drug side-effect related and is rather related to the way all of the TKI Treatments are processed by and work in your body I’ve been told that there is a high likelihood I will experience the same intolerance with these other options as well.
Nevertheless I remain positive at every check in and hope for the best! My Doctor truly is Wonderful and so is Dr. Lipton so I am confident between the two of them that we can turn things around:)
THANK YOU to everyone who has shown me such a phenomenal amount of love, understanding and support over the last few months. You make the Ups and Downs fade away and continually remind me to turn my focus towards my heart and happiness. Thank you from the bottom of my heart. <3 <3 <3 <3
*Originally Posted to Facebook