Hi all
Its been a while since logging in. It's now a year 2mths since cml diagnosis. All is going well and I'm responding very well to treatment. However I feel sad at time I don't know why. In addition I feel that I'm turning into an angry person. Again this is not me neither was it my personality prior to diagnosis. Is anyone experiencing this or has has experienced this before. I'm on Nilotonib and would be grateful if I hear from others and how they dealt with this if relevant.
On fire
Frankly, I don't think it's the medication and I think it would be wrong to try to look purely at that as an explanation.
Cancer diagnosis is a BIG thing to deal with and you are you're likely to run a gambit of emotions. Anger being one of them.
Depending on the sort of person you are and the experiences you've had and the people who support you then you are going to be inclined to one or another. The important thing though is how you deal with it and how you manage it. I once had a nurse say to me that maybe I was a bit angry and depressed and would I like to see someone. I retored with "Why? has he got a cure for cancer!" Appreciate that this was way back before the days of tki's and I'd had a bone marrow transplant and had just done a 4 hour trip to hospital to discover they'd "forgotten" to order immunoglobulin for me AND that I'd also got a sight threatening/life threatening complication! Frankly IF I wasn't just a bit angry and depressed then I wouldn't have been normal!
Seriously though I decided that I didn't want cancer to define me. I had a good life and I wanted that to continue thank you very much. So of course there were bad times and anger was just one of the emotions BUT it was a case of deal with it and manage it and put it properly in it's place. There was way too much going on and to NOT be angry about and for me it was about just determining not to let negative rubbish get in the way.
I train people to ride and drive horses in high risk andrenalin junky sports. So I called on coaching techniques I already have and use there to help myself and to turn negative to positive and to stay in the here and now. I know though in that context I often say to people "turn your fear to anger". I know darned well that's what I was doing. It was when I felt out of control that I'd get angry. For me out of control was something I really felt uncomfortable about. Afraid of!
To be fair I was also supported by a good network of relatives and friends who in the main are positive people. I'm a huge believer that "attitude is infectious". I also think you can think yourself well or ill. Those are the reasons I don't even like to read what side effects I'm "supposed" or likely to have. Got to say I did cut out negative moaning minnies from my life and I determined not to put up with crap!
I'm an older northern man and was never likely to do such as "therapy" but I'd not hesitate to say that IF after a period of time you're struggling to find coping mechanisms that help you to go back to your preferred behaviour and previous way of being then it might be a good thing to speak to your consultant and ask for a referral.
In the meantime you can have an angry rant here and I'll give you a verbal slap and tell you to get over yourself ;)
Hi
I would personally be inclined not to rule out your TKI causing or at least contributing to your symptoms. I believe if you Google low mood or depression and Nilotinib (Tasigna) in the side effect profile this is indeed listed.
My response is from a personal point of view, and maybe from someone who is in the unique group of being on all four TKIs over the past 2 years - with problems. I can say that my mood on Dasatinib was so noticeably low that my wife even noticed a massive change in me, on switching to Bosutinib, my pain and other issues remained but my mood is completely different and back to how I have always been. Nilotinib didn't change my mood at all, but that is me, and I am different to you, as you are different to others on here.
I again, from a personal point of view think it would be foolish to automatically assume it is just the TKI, but it would be equally foolish to rule it out. If caffeine can affect some, but not others, some kinds of alcohol, drugs and even food groups, it would be silly to believe a certain TKI would be immune to chemical changes affecting your mood. These drugs are potent, they have to be, if they can give some bone pain, some gastro issues, some dermatological changes, why not issues causing your mood to suffer?
I would at least chat to your consultant and nurse to see if they have experienced this.
As it has been said, Cancer is still a big diagnosis and it will impact on you at certain spells, it has to. Remember this forum is here for you to speak to fellow CML'ers.
Take care and be kind to yourself.
John
