Cancerversary Time

Today is my "cancerversary". It has been three years since my diagnosis. It's kind of ironic that CML awareness day is the same day I was diagnosed. I have to admit in this situation I'm in right now, it feels like the glass is half full. On the one hand I've survived three years. On the other hand, quality of life is not that great.

Original Art by Elizabeth Munroz
So here's an update. My fatigue was debilitating enough to make me beg my doctor to take me off my Sprycel. Since my diagnosis I began taking 100mg daily. I got PCR-U within 4 months (no sign of disease) and it has continued to remain in remission.

But, I have lost a quarter of my body weight due to ongoing nausea. My hair started to turn white (I now dye it). My skin is so dry it's a constant battle to keep the sores from getting infected. I wake up with headaches, and I have throbbing in my head and neck most of the time. I try to just ignore it, but sometimes it gets very distracting. Okay, I told myself, I gotta live with this. It's the only way. 

But 18 months ago, I began to have fatigue and it increased exponentially so that in the last month or so, I had to lie down every few minutes because I was so exhausted. You can't even imagine what it's been like to have to go somewhere in the car. Upon arriving anywhere, I would have to literally back up and lean against a wall, just to have it hold me up.

When I lost my cat, I didn't have the energy/strength to call it to come home, or to walk the neighborhood to search for it. That was very stressful. Thankfully, my cat came home nine days later. More stress because he needed vet care. It was very difficult for me to physically handle. My cats mean a great deal to me.

My oncologist was either inexperienced with Sprycel or just plain ignorant. When I told her about this side effect she emphatically said it wasn't related at all. But, I spoke to a pharmacist associated with Bristol Myers Squibb, the company that manufactures Sprycel. He told me that at least 25 percent of all patients taking Sprycel, have fatigue as a side effect. And that is considered significant, therefore a major side effect. I really lost my respect for my oncologist and immediately found another.

I'm aware there are patients who go without treatment after being in remission, so I discussed it with this new oncologist. After lowering my dosage to 80 mg. for a couple months, she agreed I can take a little vacation from Sprycel and see what happens to the fatigue. In the meantime, I will have regular testing close together.

I have been off a little over a week. Guess what, I drove myself 90 miles to visit family, attended a performance, stayed overnight, went out for breakfast and drove 90 miles back home the next day. Two days later, I drove 60 miles and spent the day at a hospital waiting for a loved one to come out of surgery. You know what that can be like.

Just a few weeks ago I wouldn't have been able to do that at all. I am aware that dying is a possibility if my CML cannot be controlled. But, living with a quality of life that feels like death while taking Sprycel... well... It's hard for me to accept that the rest of my life should have to drag out many years in that condition. Would it be worth it?

1 comment:

  1. Jan here: I'm so sorry you've had these awful side effects. I can't begin to imagine how hard it is. I guess the only way forward is balancing medication and quality of life. I hope you don't take too many risks though, as I want you around for many years to come. Sending you love and hugs.


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