I've seen a number of people mention depression on various conversations, sometimes attributed to the TKI. I thought I'd share my experience with depression and dasatinib.
I started my CML treatment with two months of nilotinib, which was stopped because of a TIA. I felt like the nilotinib was trying to kill me the entire time anyway (heart pounding with mild exertion, blood rushing in my ears) so was relieved to transition to another med. I was changed to 100mg dasatinib. The 100mg rendered me lightheaded and miserable to the point of maudlin. After two months on 100mg dasatinib I was reduced to 50mg. I was still pretty depressed, which I attributed to the fact I'd not yet been able to get to a reasonable place physically, still issues with lightheaded, difficulty speaking, chest pain, etc. Also I was found to need another increase in thyroid meds and low thyroid can make you depressed. So I saw a therapist, and got an increase in my thyroid meds. I had a lot more chest pain with the thyroid med increase, so let my doctor know and went off the dasatinib for a few days until that calmed down. The morning after my first skipped dasatinib dose my depression was gone, like a switch had been flipped. I was giddy. Everyone at work noticed my mood. A few days later I was back on the dasatinib and back to depressed, again immediate. I went off the dasatinib again a month later for three days. My speech had improved pretty dramatically the first time off the dasatinib and I wanted to be fully functional for my next appt. with the onc. Also my birthday was the following day and I was hoping for a repeat of the happiness for my birthday. It worked, again like someone flipped a switch. The first morning after the skipped dose I was happy, and stayed that way for the days off. I was also warned by my doctor not to do it again, and have been on good behavior since.
Although by this point I was pretty sure the dasatinib was a big factor in my depression, I was expecting the increased thyroid med would bring some relief as hypothyroid also causes depression. It did not go that way. The increased thyroid med certainly gave me more energy, I'd been dragging along for some time. The energy went to frustration and rage, not happiness. I drove home from work contemplating if my little car could hold enough momentum on the rough grass to obliterate itself, and me, if I veered off the road to the bridge abutment. I was angry at the world, myself, and suicidal. My brain was like hot oil. I'd get home from work and just sit in the car, not wanting to deal with going in the house. This was every single day. I was sure this was just a phase, and thoughts, and I could control it, until something trivial set me off at home and I started hurling things across the room and shattering them against the fireplace, one by one. I realized I did not have control. I called my doctor the next day and said I could not stay on dasatinib at 50. I needed a new drug or lower dose.
I went to 20mg dasatinib. I was so worried the reduction would not be sufficient to stop the depression, but it was, and is. And the effect was immediate. Like a light switch. Not as good as no drug, but generally I am fine. I still have the angry "Sprycel brain" as I call it at night starting an hour or two after taking it. Fine if I'm active or sleeping, but if I wake up and start thinking I go down the rabbit hole. If I can stay asleep until 2 or 3 AM then I'm okay. I've been on the 20mg for 10 months now.
I've always been solid that the TKIs will keep my CML in remission. The doctors told me this was simple, just take a pill and the disease will be controlled. The results never gave me reason to question this, WBC from 160K+ to almost normal in 3 weeks, BCR/ABL dropped quickly and now mostly inching its way down further. I have a strong faith in the science, and am generally an optimist. I have had serious concerns about my health since starting the TKIs, and go through periods where my chest pain ratchets up, difficulty speaking, swaying when I walk. This creates stress for me because of the symptoms themselves, and also because the oncs think this has nothing to do with the TKI though it all started with the TKI, and regular doctor has no other ideas. So I'm left in the middle with the problems, but they come and go so not always bad. I still talk to the therapist as needed. But none of this compares to that wave of depression, boiling over in my brain, that I get at higher doses of dasatinib.
I'm putting this out there as I've seen people wondering if the TKI is contributing to the depression. The dasatinib causes depression for me at higher doses, a massive wave of depression. At 20mg the dasatinib still works to keep me in remission without that overwhelming depression.
