The Roller Coaster Ride

Ahhh, the roller coaster ride of living with CML. Just the other day, aka yesterday, I posted about how "in 2014 I learned to better manage the side effects of my leukemia and how I feel better than I have since being diagnosed with CML."

Just one day, wait not even a full day, a half a day later all of that was about to change.

Today I went in for my quarterly checkup with my oncologist. Well let me back up a little... the previous checkup in October wasn't so great. In short and simple, the goal of my treatment is to kill all leukemic cells in my blood. They measure this by a %. The goal is to be at 0% or undetectable, meaning that the meds are doing their job and killing all the 'bad cells' or leukemic cells. So every 3 months I go in for testing to see where we are and cross fingers that I'm at 0%.  I have basically been at 0% since I started treatment. When I was diagnosed, I was only at around 13% meaning 13% of my blood cells were leukemic. Because of that we realized we caught it very early as most people when diagnosed are at a much higher percent. So anyways, 0% is where I've been, which is great. The best part is almost a year ago, we lowered my dosage enough to where it was still being effective and minimizing the side effects, which was great. When I started treatment, I started off at 400mg of Gleevec, it worked great but the side effects were debilitating. The energy was literally sucked right out of me, I was nauseous about every night and hugged the porcelain thrown more than I ever wanted to, had bad mornings, had horrible headaches, felt completely dehydrated, and also had a whole other slew of side effects. Every day was a struggle. It wasn't fun. It was to the point where I had a very serious conversation with my oncologist and told him quantity of life doesn't mean anything without quality. So with trial and error, we successfully reduced my dosage to 300mg and for the past almost year, it's still been just as effective (still at 0%) AND my side effects became better to manage and as mentioned "I felt better than I have since being diagnosed with CML." Reducing it by 100mg doesn't seem like a lot but it made a huge difference. 

Last October, my results came back detectable, a small % of my blood cells were leukemic, meaning the medicine wasn't being as effective and wasn't killing all of the leukemic cells. Today is the first time I've seen my oncologist since and he decided he wanted me to increase my dosage to at least 400mg starting today and maybe more pending the results of the blood work I did today (will take a couple of weeks before I get the results). As if that wasn't bad enough to hear, he even mentioned increasing the dosage to 600mg or moving to a different medication for treatment.

Luckily today was a busy day at the office so I didn't have much time to really think about what all of this means. On my way home, it finally hit me, and I cried out of frustration. I feel like these past couple of years I've finally made such good progress is learning how to live my new 'normal' life, that my body has finally adjusted to it,  and now it's getting ready to change again. 400mgs means back to nauseous nights, horrible mornings, not having any energy, having bad headaches, and always feeling dehydrated.  I don't even want to think about the side effects with doubling my dosage to 600mgs. And if I have to switch medications all together, that means my body is going to have to readjust to the new side effects it will bring, and if it is anything like the Gleevec, it will take a couple of years for that to happen.  And on top of that, until we can get this under control constantly, more children is out of the question. That is the worst part for me because more children is definitely something I want and it seems like every time I'm hopeful it will happen, here comes another setback. So frustrating.

Tonight I'm going to bed feeling anxious, feeling emotional, and just feeling frustrated. But tomorrow when I wake, it will be okay because I know I can't control it, I just have to embrace whatever comes. 

If you are new to CML, you can follow my entire journey here.