So last Friday we ended up stopping Sprycel TKI treatment again because my counts were too low to continue. My doctor referred me to a specialist at Princess Margaret to give some guidance on my case, who I was able to see yesterday. His name was Dr. Lipton and he is a well known expert and researcher of Chronic Myeloid Leukaemia.
TKI drug treatments are modern medical miracle that let so many people with CML live long and mostly normal lives. Unfortunately my body can’t tolerate a full dose or even a low dose of the TKI long enough for it to make a difference, so my CML instead of getting better is progressing.
At the moment my blood counts are too low right now to do anything, so I have to wait three weeks before we can start again (Three week drug vacation in the middle of summer is like music to my ears!!) When I start again we will be trying the same drug one more time but in a variating dose schedule at an extremely slow pace to see if I can build up a tolerance.
Should this not work there is a secondary drug option We can try but he was fairly confident my response to all of the TKI drugs would be the same as they behave VERY similarly.
At this point there is concern that I will not be able to tolerate the treatment long term enough for it to work, or alternatively that I’ve developed a secondary mutation that makes the cancer drug resistant. We did have a talk about the possibility that I may need a transplant if we aren’t able to resolve this in a timely fashion and it continues to progress.
I feel like things got a little bit more real than they were before, which is definitely not the friendliest feeling sometimes. I’m certainly frustrated that my experience doesn’t seem to mirror other people I’ve met with CML who are able to take TKI’s without these issues. I’m also disappointed that five months of treatment has really kind of only led back to square one, and admittedly sometimes I’m a bit afraid and anxious about the uncertainty of it all.
That being said, Dr. Lipton was kind enough to take over my case for now and I’m extremely hopeful that if anyone can guide me through this crazy journey safely and successfully it’s him! I’m going to keep doing what I’m doing and soak up all the sun and fun I can in the next three weeks during this little lovely break!!
I hope everyone enjoys the beautiful weather the long weekend is bringing our way and has lots of fun with family and friends. Lots of love and Hugs! ❤ ❤ ❤ <3
*Originally Posted to Facebook