Friday, May 10, 2024

Tolerability vs Intolerability


When someone lives with a chronic disease, the balance between controlling the disease, and ensuring the person's quality of life can be challenging.

I was diagnosed with CML in February 2011. From early on, I realized that CML is a journey, not a sprint. People are diagnosed with this blood cancer in many different ways; some are diagnosed during routine physicals, while others exhibit many signs of leukemia, and are really sick. 

I was quite sick at diagnosis.

In the beginning, my side effects from my medication, Sprycel at the time, and my symptoms from CML were often difficult to tell apart; Is it the Sprycel, or the CML causing me to feel poorly, or to be in pain?

As time went on and my CML became stable, I eventually reached MMR (major molecular response) and was better able to distinguish medication side effects from leukemia side effects.

Thus I began my CML journey.

During the first few years, my side effects seemed to fluctuate between tolerable, and troublesome. I suffered from bone, muscle, joint, and nerve pain, headaches, fatigue, hair loss, weight gain, and pleural effusions.

At times, these side effects caused me to spend numerous days on heating pads doing little more than going to the bathroom and eating. My mind was too occupied with pain to be able to read, watch TV, or engage in any sort of conversation.

I understood during those early days that this was to be expected; I was fighting cancer and my body was fighting hard to win the battle. As time marched on, I began to have good days in between the bad ones. I was able to start returning to a semblance of life, albeit different than the one I had known before my diagnosis.

I discussed my side effects with my CML Specialist and he had a variety of suggestions and medications that helped to control my pain and discomfort. Fortunately for me, he was extremely compassionate and understanding. At this point, I accepted my new normal and tried my best to live within these confines.

My CML was well controlled and for me, that was my primary goal. I deemed these side effects "tolerable". Meaning that the success with which my CML was responding vs the discomfort I was feeling was "worth it". My other medication options at that time were not acceptable to me. The reward outweighed the discomfort.

Fast forward five years and my pleural effusions became larger and more troublesome. I found myself needing a thoracentesis to have the fluid drained from my pleural sac at an ever-increasing frequency. We are talking two liters of fluid that would accumulate weekly!

Yet, I was still unwilling to switch from my "miracle drug"! I saw a pulmonologist and discussed a permanent drain and pleurodesis. Neither sounded fun! I continued down this path despite this "inconvenience".

Several years down the road, I needed to have rotator cuff surgery, which required a block, and anesthesia; both would be affected by my pleural effusion and my inability to breathe "normally". I had two thoracentesis the week of the surgery, one the day before.

This surgery is typically outpatient, but due to my CML, and my pleural effusions, I was going to be kept overnight to make sure all was well. That turned into a five-day stay in the hospital, as well as going home on oxygen, as my oxygen level continued to dip extremely low.

This side effect suddenly went from being tolerable, to intolerable. It was now seriously affecting my quality of life to a degree that could become dangerous.

What I realized at that point in my journey was that I was stubborn! I would much rather continue along my journey with the devil that I knew, versus starting a new journey with one I did not. I realized that while most of my side effects were life-altering, painful, and annoying, they were still tolerable, BUT there was one that finally had become intolerable.

Needless to say, I switched from Sprycel to Bosulif, learning my level of tolerability versus my level of intolerance, which is apparently high. I still have a lingering mild pleural effusion (tolerable) and far fewer side effects than I had on Sprycel. All of which are tolerable. Maybe next time I am facing a medication change, I won't be so stubborn!

I suppose that in my eyes, fighting cancer was not going to be easy. I expect good days, and bad days, aches and pains, and fatigue. I have accepted these side effects as part of my journey in my battle with CML, however, if there is an option that helps to alleviate or lessen said side effects, then by all means, these options should be explored.

Obviously, side effects that are damaging to your internal organs, that you have no control over, should be considered intolerable.

So my question to you is which side effects do you deem tolerable, versus intolerable? What is your risk versus reward scenario? What are your expectations?

Here's hoping your journey is full of happy moments and much joy. I am looking forward to hearing from you.

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  1. Thanks for sharing! It’s crazy reading this because I was on SPRYCEL for 10 yrs but had to switch because it quit being effective & I came out of remission.
    I had VERY little side effects.
    When my doc switched me me to BOSULIF, I experienced more symptoms that I’m still trying to work through.

    I guess each individual reacts differently to different meds!

  2. Thanks for what you write. I was on Gleevec for five years and have recently switched to Sprycel. For me it was a big improvement. In retrospect, I realize how incredibly bad Gleevec made me feel. Nausea, vomiting, extreme fatigue, bone pain, cramps and much more. My hematologist said it wasn't side effects, but I knew all along. Each side effect on its own may not have been that serious, but all together, every day for five years was unmanageable. I had no life left. I went to work because I had to, then straight home and laid down on the couch or bed. couldn't take it anymore. I recently switched to Sprycel after much nagging with my hematologist. I made the switch three months ago and still feel so much better, but I certainly understand that there will likely be new things to deal with going forward. This is really a marathon and my experience is that the dockors should listen more to their patients and try to create quality of life, don't just evaluate the results of the blood tests and say that everything is fine.



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