My Dad has CML, he has been taking gleevec for years and is in a high level of remission. I have however noticed an enormous change in his personality since he became ill, I know getting CML has had a huge impact on his life, and this is certainly part of it but my dad is not the same person that bought me up, i hardly recognise him, literally hes like a different man, hes mean, angry and blames all of it on his family, he doesnt like me anymore, which i know sounds over the top but he doesnt. I suppose what im trying to understand is whether its the drugs that have ultered his mood and caused depression and anger, and if anyone else here has experienced a similar situation?
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Behavioural changes with gleevec?
sorry to hear that you feel as though your Dad doesn't like you any more, that must be awful for you. I think it's fair to say that being diagnosed with CML affects most people adversely in one way or another. Some people do become angry, some people suffer a loss of confidence and some people suffer from depression - albeit not knowingly. Again one side effect is tiredness and this can cause people to become irritable. Some people will suffer all of this. My GP was aware of the anger, tiredness and confidence elements, so they are fairly common reactions.
Now I read that your Dad has been diagnosed for quite some time, but that doesn't mean that he can't be affected by these problems - even now. Someone needs to sit down with your Dad, put these possibilities to him and see if he recognises them. Maybe he doesn't see what's happening, or maybe he does - but can't do anything about it. I suspect that your Dad does care, but because of his situation he can't get his real feelings past the anger. It is of course possible that the Glivec is responsible, but personally I doubt it.
There might be other people on here who differ with this viewpoint Kate, and if they do, hopefully they will contribute.
So sorry to hear how upsetting this is for you. When diagnosed & as a result on Glivec, I didn't suffer anger , but the exhaustion on Glivec was indescribable. Not only did other people not recognise me, but worse, I didn't recognise myself. I completely lost touch with myself. I'm absolutely fine now on Dasatinib, but I do remember bleating during the dark Glivec days, that I felt enormous guilt. That guilt was coming from having been given a life-saving drug, but a drug which I hated and loathed which then led me to decide to let nature take it's course. It was only then that the Oncologist declared me to be "intolerant" and changed to Dasatnib which is a much kinder drug for me.
So, your Dad's either responding to his diagnosis with anger, or, to how he finds life on Glivec. You don't say how old he is, but I have to say that I wouldn't have wanted anyone around me when on Glivec and although maybe could have done with a hug, or a cup of tea being made, I was very grateful for living on my own. and my children being grown up and moved away. Your Dad may too have feelings of guilt, as a Dad, he may feel that it's his job to protect and nurture you, not the other way round?
I must sound awful!!
Let us know how it goes & know that we do all really feel for you.
Thanks for the insight, its really helpful to hear your experiences and points of view.
My Dad was diagnosed at 43 and he is now 50, Its interesting you mentioned that you felt a huge amount of guilt being given a lifesaving drug, I think this is exactly how my dad must be feeling, i dont think he feels as if he has suffered enough and that maybe it was too easy, i dont know? I think the way i see it is, if you have diabetes would you stop taking your insulin? its a similar kind of situation. As his daughter im so happy these drugs exist, he has 4 children and my brother was only a baby when he got ill, so for us Gleevec is the best thing ever invented. I want more than anything for him to be happy again, and make the most of the life hes been given, but i know something has changed in him, probably for good.
My family didnt really know what to do when he became ill, i dont think we knew how to make him feel better, we tried in our own ways but maybe it wasnt what he needed. and like you said he has never got past the anger, he is a man who was very much in control before he became ill and i think having his power and some of his choices taken away has really messed him up, any ideas of how i can try to help him? ive tried talking and being there for him, but because im his daughter he feels he cant tell me things.
I was on Glivec for about 5 years and noticed that I was getting low moods and mood swings (which my wife kindly pointed out!) which got me to a point where I was looking for the nearest cliff-edge and no, I am not exaggerating. My consultand got my mental health assessed and the came to the conclusion that I was severly depressed. I was taken off of Glivec and within 4 days got 'me' back and had boundless energy and what I guess was a drug-free high. 3 weeks after this I was put onto Dasatinib and within 1 month the depression returned and I experienced probably the lowest and scariest 6 weeks of my life. Consequently I am now on low-level anti-depressants which have had a postive effect but, I think, need a bit more tweaking.
So, yes, I strongly believe that Glivec AND Dasatinib can bring on depression in certain people, though perhaps not everyone. Of course, I am not a physician but all of my experiences point to this conclusion and due to this extra treatment my life is slowly getting back to normal. Well, as normal as CML life can get!.
Perhaps you can get you dad to get himself checked out and tell him (or show him this message) that it isn't embarrassing, it is just the way life is for some people. Something like 15 % of cancer suffers apparently get some form of depression, about double the average for non-cancer sufferers.
I would hazard a guess that dad does like you but depression, if that is what it is, meant for me at least that I pushed away those closest to me not because I hated them but because I loved them and did not want to hurt them with my moods. Its scary and its not nice but, fortunately Wifey still loves me, although at the time I could not work out why!
My mom was diagnosed with CML seven years ago.,she is now 55 years old...she immediately started Gleevec treatment but after four years she had to stop coz of fluid in heart....she continued therapy with Tasigna for a year...but her system could not accept it...she felt too much pain...so shes back on Gleevec again.
She sees a therapist every now and then....and i must admit that my mom is a very tough woman who does not break or fear easily.....shes also on anti depressants just small doses through all theses years.....
The last few months....i have noticed very strange behaviour...she does not listen anymore,she yells as crazy about anything she even sees me as her enemy,i would like to add that i was the only person she felt 100% safe with....she blames everyone and i see some kind of obsession towards my dad...accusing him for things that don't exist...its really like shes not her anymore.
I really don't know how to act as she always understood and listened but now its impossible to cummunicate with her...its as if shes another world...can anyone help me>advice me what to do????anyone seen something similar...?
It might be that you mother is suffering extreme menopausal symptoms?