Is Taking a Break From Treatment Worth the Risks? Here's My Experience

I was diagnosed with chronic myelogenous leukemia in 2011. A few years after treatment began, my oncologist congratulated me, saying that the leukemia was no longer detectable in routine blood work or specialized bloodwork. I was on cloud nine, and I thought I was in remission.

However, my oncologist refused to use the word "remission." They instead called it a “full metabolic response” to treatment. I was greedy for a treatment break, and he gave me a few months off. I received what he called a “chemo break” with follow-up bloodwork.

The brief joy of taking a break from treatment

It felt so good to take a break with treatment. I had so much energy! It’s like a new lease on life where everything looks, feels, and tastes better. The gratitude is immense.

I was in the bakery aisle of the grocery store later when my oncologist called me. On the phone! Can you believe it? I couldn’t! I thought maybe it was more good news, as I had done my due diligence with follow-up bloodwork, but BAM! The results showed how leukemia blast cells were overtaking healthy cells at an alarming rate. My oncologist told me I had suffered an “aggressive relapse.”

Facing an aggressive relapse

I was floored. Three months after my “full metabolic response,” the leukemia resurfaced. Some kind of weird foresight had told me to keep my leftover treatment pills, so I left the grocery store and ran home, rummaging through a dark corner of my medicine cabinet. Without hesitation, I started treatment again.

Every time I’ve received a treatment break, I’ve been so happy to return to my old self. I get my energy back, my skin feels better, I sleep better, and my appetite is awesome. Food tastes better and there's no nausea. The neuropathy settles down, and I am able to get more exercise.

When does the disease start to surface again?

Since 2011, I have grabbed every opportunity to take a treatment break. Then comes the inevitable, I guess. Bruising starts again, my body aches, and an infection or two interrupts everything. The disease bubbles to the surface. I should know by now.

Blood cancer is different for everyone. Some people watch and wait, some people experience remission with regular follow-up, and some people are crossing their fingers for better treatment responses. Then there are those of us who are given a choice for a treatment break. For me, a treatment break means feeling better for a while.

Is taking a break from treatment worth the risk?

Is feeling better the best choice? As I look back, making that choice to take a treatment break led to complications each and every time for me. Then again, ongoing treatment led to complications, too. While in treatment, I experience heavy fatigue, neuropathy, spleen pain, and brain fog. It’s six of one or half a dozen of the other.

I don’t want to blame myself for the aggressive relapse, yet I beat myself up for making that choice anyway. Getting back on treatment takes time to see results, and that time can give leukemia the upper hand. I don’t want to give blood cancer any chance of success, and I feel like I did exactly that.

I just wanted to feel better for a while. So, what decision would you make, my fellow blood cancer patients? Are you comfortable with "watch and wait," do you feel more confident while in treatment, or would you take a chemo break when it is offered? I’d love to hear about it below. Thanks so much for reading.