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Sprycel and depression

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I've recently switched to Scemblix after three years of Sprycel.  I've not been very tolerant of the meds.  I started with Tasigna.  For two months I was very weak, tired, heart pounding so hard I almost expected it to break out of my chest even for mild activity.  Moved to 100 mg of Sprycel for two months and could barely function.  I was so light headed I had to have someone drive me to my next appointment.  My dose was reduced to 50 mg. I was dealing with a raging depression, brain like hot oil, angry and suicidal but thinking I had my actions under better control than my thoughts.  I had physical side effects as well, balance and speech problems.  During this time I had a couple short breaks from the Sprycel.  Both times I was immediately relieved of the depression the first morning after a skipped dose.  I woke up happy.  The depression went on for a few months and finally I lost control, started throwing things in the house, in a rage, shattering them against the walls.  What stopped me was the terrified look of my poor dog.  I called my doc the next morning and went to 20 mg of Sprycel.  This was MUCH better than 50 mg.  I still had some physical symptoms.  My mind was pretty much a snake pit at night so I tried to time the dose and get to sleep and hope I did not wake up.  While the disease was not rebounding on 20mg, neither was my BCR/ABL continuing to go down.  I bounced around the 0.02+ range for the next couple years.  

In August I switched to Scemblix.  I was nervous starting a new med at full dose given my history but nothing ventured nothing gained.  I do have some physical side effects, mostly gut problems I'm learning to manage and live with.  The primary difference is I'M HAPPY!  I was unsure how much of my remaining milder depression was from the Sprycel once I was down to 20mg.  Apparently pretty much all of it.  I dropped the Sprycel and I am just freaking happy.  To top it off my BCR/ABL went down to 0.004 after 3 months on Scemblix. 

CML has become a trivial aspect of my life.  Even without the drop in the BCR/ABL (I'm hoping for TFR) I can be happy living on Scemblix.  I have to go to the Dr. 3 times a year and take a pill twice a day.  I'm happy. I'm finally good to go.

Maria

Maria, this is excellent news! Thanks for the report. heart

Just curious, what is your current dosage?  Do you have a fasting window around the time you take it?

 

Kirk

40 mg twice a day.  Yes, there is a fasting window, 2 hours before, 1 hour after.  

I read where it is also prescribed as 80mg once a day.  This would make it somewhat easier.

Of course at the rate you are responding you may be able to reduce your dosage in the not too distant future.

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I never found a way to lift the depression while on the Sprycel. It would lift immediately when I stopped taking the med. It was better at 50 than 100 and better at 20 than 50 but the depression stuck till I went on Scemblix. Now that i'm happy again I won't go back on Sprycel ever. Not worth it for me. Clearly not everyone has this side effect. I hope you can find a way past it or onto another med.

Hi. Since the beginning of my treatment I’ve been struggling with anxiety, but for about the last six months I haven’t been coping anymore and depressive episodes have appeared. I’m under the care of a psychologist, but I’m considering antidepressant medication. Has anyone taken them and had positive experiences?

I’ve been on treatment for 6 years — until 07/25 I was on 800, now 600, and there’s a plan for another reduction of 200 in 07/26. My latest result is 0.002.

Hello,
I have been on an antidepressant for many years. It has probably saved my life as much as the TKI has (I'm on sprycel, but the depression long preceded my cml).
That said, all meds have side effects and risks and before you go that route I urge you to 1) get your vitamin D checked/ start taking D if you aren't already, 2) if you are able, do moderate exercise 150 mins weekly, and 3) limit intake of sugar/ simple carbohydrates.
If you are in a part of the world with less daylight, that plays a role as well. Light therapy with a light box every AM helps me.
Take care and remember you're not alone.
Winnie

Thanks, I was actually coping quite well as long as I was physically fit — I went to dance classes and walked a lot. But then muscle pain started, getting stronger and stronger, and now even standing in church for one hour causes pain in my lower back and legs the next day. And when I stopped being active, increased anxiety and depressive states appeared.

I'm sorry to hear you are struggling. If your side effects are that debilitating I would definitely talk to your oncologist about lowering your dose more quickly or trying a different TKI. The good thing is that your level is nice and low.